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sjmcphee
11-10-2015, 04:41 PM
Its been some time since I posted here.
Normally when I come here I rant and rave about scoliosis biomechanics and I'm gone just as quick as I came.
But this time I'm going to try it differently, this time I'm going to actually try to tell my story, from my point of view.
I want the long time members of this forum to understand why I came to push the issues I have.
I want them to understand why I've felt alienated and let down by the patient and research organizations.

Before I begin, I guess one of the main things I want the reader to take away from my story is that my scoliosis does not fit into any conventional category.
Keep this in mind as has a huge bearing on the actions I took after being diagnosed and the way I went about trying to deal with it.

I've told this story many times, but I'll run through it again.

I hadn't really had any problems with my back to speak of growing up, though as I look back there were some noticeable signs prior to when I was diagnosed that I probably should've paid more attention to.
My scoliosis was diagnosed in 1998 (age 25) with a curve magnitude of 11 degrees after a work injury that caused the normal working structure of my spinal column to become altered. (Altered Biomechanics)

It was there that all my problems really started.
I didn't demonstrate rapid progression during growth so I don't have AIS.
I don't have Degenerative Scoliosis, everything about my spine in that regard was normal, and my scoliosis isn't associated with any other condition.

https://www.srs.org/patients-and-families/conditions-and-treatments/adults/scoliosis

Now one thing that made my situation all the more complicated was that I was actually able to make sense of the altered state of biomechanics in my spinal column following the work injury, so you can understand that when I looked up scoliosis and found out that little was known about the biomechanics of scoliosis and that the cause was unknown whilst I was able to make sense of what was going on in my spine that I had reason to think that I had some important information about this area of the condition that wasn't well understood.

So as a patient, my personal experience with scoliosis did not corroborate what was written anywhere in the literature or on any prominent websites, (and this is part of the reason I always pushed for better scoliosis websites and information online).
And this not only alienated me in my life compared to other people that don't have scoliosis but it also alienated me within the people who do have scoliosis.

And given that all the information given in books, literature or websites stated that Adult Scoliosis was considered to be AIS that went undiagnosed until adulthood, it was reasonable for me to assume that whatever 'event' had occurred within my spinal column to alter the state of biomechanics, and set off a resulting 'vicious cycle of loading within the altered biomechanics that would continually cause the scoliosis to progress' likely also occurred in AIS.

And so I put forward my research ideas.

That the location of where the altered biomechanics originally occurs determines the curve pattern, and that precise accurate models of every curve pattern could be created based on what I knew from learning how it worked from my spinal column.

I felt like I had a responsibility to everyone with scoliosis to pursue this research until it was brought to a reasonable conclusion.

I wasn't convinced that my scoliosis was the same as AIS, but I didn't think that there was any way that my ideas could logically be incorrect, and so I thought that any attempt to prove me wrong would only end up proving me right.

But there was one thing I overlooked...

Around the last time I was here I was updating my scoliosisblogs website with some new blogs that people had requested I add, and I took the time to read some of the blogs and look at some of the pictures of the girls scoliosis, and what I was specifically looking for was evidence of altered biomechanics.

It seemed that even though some of the girls had quite big curves, they didn't really look like they had the 'altered biomechanics' component present.

So I emailed an orthopedic surgeon and I asked... as I do.
I've had no hesitation over the years emailing countless SRS Presidents, Administrative staff, Research Directors, Researchers, Surgeons, and anyone else I could annoy and terrorise in an effort to try to make them pay attention to me, with limited success and all in the name of doing what I thought was the right thing.

I asked quite a few questions in my email, but to simplify I asked:
"At what degree curvature does 'altered biomechanics' occur in AIS as opposed to Adult Scoliosis?"
And this was his response:

"I think you would be disappointed with the current literature for the very good and specific questions you are asking. The out of balance increasing the curve has much more application to the adult-type scoliosis than the adolescent type. I don’t start seeing evidence of that in the adolescents until well over 40 degrees. In the adults I start to see it at about 10 degrees."

He went on to reinforce that my questions were a decade ahead of the literature.

And so, if this information is correct, and if patients with AIS don't demonstrate 'altered biomechanics' until around 40 degrees then that effectively disproves my assumptions that "the location where 'altered biomechanics' occurs creates the curve pattern".
-Finally, someone proved me wrong, but I had to ask the right questions, and no longer would I have to feel that my research was so important that I'd need to pursue it further for the sake of others.

But it doesn't necessary mean I was wrong about my scoliosis or that I was lying when I said I was able to make sense of the altered biomechanics of my scoliosis; and part of me still thinks that the SRS maybe should've done more to learn what I was trying to show them, on that issue.
Its interesting that he said he sees it occur in adults at around 10 degrees.

So finally the obligation I'd felt to push my research to a reasonable conclusion had occurred.
Or so I thought.

There's still one thing I want.
Acceptance and Acknowledgement I guess.
Both from my scoliosis peers and from the medical establishment.
(But more so from the medical establishment)

It dawned on me a few weeks back that in some ways I'm a victim of medical discrimination.
Thinking about the diagnosis protocol, you go to the doctor and they look over your back and send you for x-rays.
The specialist (orthopedic surgeon) looks over and measures your x-rays and does a physical examination, (plumb line test, forward bending test, measures your legs and tests reactions), but I honestly don't know if they are specifically trained to identify and report on the existence of 'altered biomechanics' or not; it certainly doesn't happen in the context of x-rays or the radiologist report.
I doubt any studies exist showing the effects of 'altered biomechanics' in its own right, and I've never received any kind of report conveying how the altered biomechanics affects me in my daily life...

So on some level medically, I get hung out to dry.
In this regard all I want is an acceptable diagnosis that adequately reflects the true nature of the way my scoliosis affects me.

And on a peer level it should be accepted that even though I have a curvature of a lower magnitude than many AIS patients, my scoliosis includes an extra component that AIS patients don't usually have until around 40 degrees and that makes my scoliosis different.

This may mean that my scoliosis might be more debilitating with that of an AIS patient at an equal level of curve magnitude because of the extra biomechanical component but I must say that don't want to start a sexist debate on the issue with the girls, because I really do acknowledge that a patient with AIS faces a whole different set of issues than I've had to. (rapid progression during growth, bracing, surgery).

I haven't covered everything in this post.
Leg Length Discrepancies and where they fit into the literature and whether or not this was a causative factor in the development of my spinal curvature, as it progressed to the point where altered biomechanics was possible and occurred.

Also I probably have to again make some apologies for the way I acted over the years and also for misleading anyone into thinking there was hope for a non-surgical method to treat AIS based on my research ideas I tried to put forward.

I want you all to understand that there was a reason for everything I did.
That my personal experience with scoliosis did not corroborate what was written anywhere in the literature, and still doesn't.
Also that both my personal experience and what was written in the literature gave me reason to feel I had knowledge worthy of further investigation and that I felt inclined to investigate it to a reasonable conclusion - for the sake of everyone.
And finally that if the patient or research organizations had've taken steps to answer my questions and try to make it make sense 17years ago, it would of made things a whole lot easier and I would never have need be stuck in the position I was in for so long.

I won't deny that I went about many things the wrong way, but you have to expect that kind of behavior when a person is pushed into a corner and feels trapped, whether its right or wrong.

Finally, I'm going to have to discuss my scoliosis websites, and what to do with them.
But I'll leave all these things for another day.

susancook
11-10-2015, 07:11 PM
Your write up overwhelms me, so I do not know where to start.
Scoliosis bio-mechanics are not my strong suit, so I will not offer any sage/wise recommendations. I am fascinated with the topic and found a book on-line to order sometime in the future when I have time to read it. Perhaps I will have time in recovery from my impending surgery.

We are not a medical advice community, most people here are supportive and can tell individual stories, coping mechanisms, or ideas on pain management or hospital prep that worked to didn't work for them.

I hope that you find what you are looking for here. I would like to make a suggestion.....that you limit the length of your posts and pose specific questions. Perhaps it is just me, but being overwhelmed with your post and not knowing where to start, I just hope that you find the answers that you are seeking.

Susan

Pooka1
11-10-2015, 11:16 PM
Its been some time since I posted here.
Normally when I come here I rant and rave about scoliosis biomechanics and I'm gone just as quick as I came.
But this time I'm going to try it differently, this time I'm going to actually try to tell my story, from my point of view.
I want the long time members of this forum to understand why I came to push the issues I have.
I want them to understand why I've felt alienated and let down by the patient and research organizations.

Hi Scott. Good of you to check in. Glad you are still working the problem.


It seemed that even though some of the girls had quite big curves, they didn't really look like they had the 'altered biomechanics' component present.

What does "altered biomechanics" look like?


There's still one thing I want.
Acceptance and Acknowledgement I guess.
Both from my scoliosis peers and from the medical establishment.
(But more so from the medical establishment)

I would hope your peers would accept you.


I doubt any studies exist showing the effects of 'altered biomechanics' in its own right, and I've never received any kind of report conveying how the altered biomechanics affects me in my daily life...

Why do you think your biomechanics have been altered? If you never had that radiograph, would you have any way to know you had an 11* curve?

At 11*, maybe you can use PT to straighten it at least one degree and then you will no longer have scoliosis and can move on.


In this regard all I want is an acceptable diagnosis that adequately reflects the true nature of the way my scoliosis affects me.

How does it affect you physically?


I want you all to understand that there was a reason for everything I did.

I hope everyone understands you are just searching for answers and acceptance.


I won't deny that I went about many things the wrong way, but you have to expect that kind of behavior when a person is pushed into a corner and feels trapped, whether its right or wrong.

I hope you have some measure of peace now, yes?

Take care, Scott.

sjmcphee
11-11-2015, 08:34 PM
Hello Susan,

Thanks for your reply.
I was overwhelmed by the prospect of writing my write-up so much that I only put off writing it for about a year.
I wanted to tell my story in a way that connected the dots of how I got my scoliosis, how it doesn't fit into any scoliosis category and how a lack of information lead me to push for better scoliosis websites and also how it was because I able to make sense of the biomechanics of my own scoliosis that lead me to pursue the research I did.

I also wanted to come back and admit that I was wrong in some of the assumptions I had made about AIS and the research I'd previously put forward.
I always said that I would admit that I was wrong if and when it could be proven I was wrong, and I was just keeping my word.

I know this is a patient support group but I've always felt like the 'black sheep' because my scoliosis is essentially different to everyone else's. Its hard for me to understand or relate to some of the things other patients endure and therefore I'm limited in the level of support I think I can offer others. I also think its hard for others to relate to my scoliosis or offer me any support because it's different to what they are used to as well. Because of this I guess maybe just being able to come here and have my say sometimes and get things off my chest is a part of my own coping mechanism, and this might be a part of the reason why I don't usually hang around for too long when I visit as well.

Sorry my post was so long, I wanted to get the bulk of my story out in one go.
I'll try not to make my posts so long from here on in.

From your signature it sounds like your scoliosis has been quite a journey over the last few years.
I hope your upcoming surgery goes well, when do you go in for that?
Is it your broken lumbar rod that is being fixed?
It sounds painful.

susancook
11-12-2015, 03:21 AM
Hello Susan,

Thanks for your reply.
I was overwhelmed by the prospect of writing my write-up so much that I only put off writing it for about a year.
I wanted to tell my story in a way that connected the dots of how I got my scoliosis, how it doesn't fit into any scoliosis category and how a lack of information lead me to push for better scoliosis websites and also how it was because I able to make sense of the biomechanics of my own scoliosis that lead me to pursue the research I did.

I also wanted to come back and admit that I was wrong in some of the assumptions I had made about AIS and the research I'd previously put forward.
I always said that I would admit that I was wrong if and when it could be proven I was wrong, and I was just keeping my word.

I know this is a patient support group but I've always felt like the 'black sheep' because my scoliosis is essentially different to everyone else's. Its hard for me to understand or relate to some of the things other patients endure and therefore I'm limited in the level of support I think I can offer others. I also think its hard for others to relate to my scoliosis or offer me any support because it's different to what they are used to as well. Because of this I guess maybe just being able to come here and have my say sometimes and get things off my chest is a part of my own coping mechanism, and this might be a part of the reason why I don't usually hang around for too long when I visit as well.

Sorry my post was so long, I wanted to get the bulk of my story out in one go.
I'll try not to make my posts so long from here on in.

From your signature it sounds like your scoliosis has been quite a journey over the last few years.
I hope your upcoming surgery goes well, when do you go in for that?
Is it your broken lumbar rod that is being fixed?
It sounds painful.

Hi, Scott Yes, both of my broken rods and a few non-fusions will be fixed. The date is not established yet, but I hope to know soon. Painful? Yes.

You said that your scoliosis is different. I think that you probably have more in common with all of us than different. We are all unique in so many ways as is our responses to our scoliosis and treatments. I am extremely unique on the forum as I am the only person that has had a screw in the spinal cord from a proximal junction kyphosis. That resulted in my partial paraplegia. While no one can say, "Been there, done that" to a spinal cord injury from instrumentation and PJK, but lots of people were very supportive.

Best of luck in finding answers to your scoliosis concerns. We are all in this together.

Susan

sjmcphee
11-12-2015, 09:20 AM
Hi Sharon,
Thanks for your reply.
Sorry for the delay in replying, I had to work on the farm where I live earlier this afternoon.
I don't really spend a lot of time involved in matters relating to scoliosis anymore.


What does "altered biomechanics" look like?
Up until the last time I was here, I assumed everyone's scoliosis had the same 'altered biomechanics' component as mine.
It was only the information I became aware of about a year ago that altered biomechanics doesn't occur in AIS until around 40 degrees that made me think differently.
It's hard to explain exactly what differences caught my eye in the scoliosis photos, maybe it was something different in the way the back muscles looked.

It might be helpful to think about scoliosis in terms of components and characteristics.

My scoliosis did not have rapid progression during growth (so I don't have AIS)
I don't have the genetic predisposition for scoliosis as no other family members have AIS
And my scoliosis did not exhibit vertebral wedging (characteristic of AIS)

On the other hand, I have altered biomechanics where an AIS patient wont have this until approximately 40 degrees.
So if you were to compare my scoliosis to a typical AIS patient, you might say that an AIS spinal column bends a lot more before it breaks (altered biomechanics) whereas mine just broke at 11 degrees and doesn't have the vertebral wedging AIS has.

So to answer your question about what does altered biomechanics look like - I was looking for evidence that the normal spinal biomechanics was still intact even though the curvature was more pronounced as a result of the curvature and vertebral wedging.

It would be easier if I had some pics, I should take a better look at this again some time and try to find some examples.


Why do you think your biomechanics have been altered? If you never had that radiograph, would you have any way to know you had an 11* curve?
I've had plenty of x-rays over the years, you must've misunderstood me.
I know my biomechanics became altered because the work injury was one where I felt and heard 2 loud crunches in my back as it occurred similar to what you might feel from a chiropractor making adjustments.
There were pins and needles down my arms and legs and I couldn't hold things in my hand properly.
As a result of the injury I could feel within my spinal column a structural element of lordosis within thoracic kyphosis.
And after the injury and over time, I was able to make sense of how the altered biomechanics was functioning in my spine in relation to curve progression.


At 11*, maybe you can use PT to straighten it at least one degree and then you will no longer have scoliosis and can move on.
My curvature has progressed since it was diagnosed 17years ago, and even if it was still 11 degrees like it was back then I couldn't just get PT to straighten it one degree and not have scoliosis and move on.
- I'm not sure you're fully appreciating what I'm suggesting by altered biomechanics.

I'd have to firstly reverse the bad biomechanical loading (as it occurred after the injury) back to the point where the original structural failure occurred in order to 'unbreak it' so that it didn't have the altered biomechanics component anymore.
Only then could I attempt to bend it back (straighten it that one or more degrees).


How does it affect you physically?
Its unreliable and unpredictable.
I have 'okay' days most of the time (not really that painful, just kind of 'knotted up' and uncomfortable) and then I have a couple of bad days (some pain, stiffness and feeling lethargic), and it usually works like that approximately every few weeks.
Occasionally I'll have a string of really bad days. Like 'I just got run over by a train' bad days.
Neck pain, lower back pain and the whole thoracic region feeling like an ironing board, sometimes tingly, numb-ish, sometimes a light burning pain in my shoulder.
I wake up feeling like 'I just got taken out by a bus' most mornings, and it takes a few hours sometimes for my body to loosen up that I feel better able to do physical tasks.
Its hard to work or plan around in that I don't know when I'm going to have good days and bad days.
- Mostly uncomfortable, sometimes painful, sometimes really painful.
I cant really sit or stand for long periods of times and I cant work anywhere near as long hours as I had done before the work injury.
I'd say it probably knocked about a quarter to a third of my strength equivalent straight off the top just from the existence of the altered biomechanics.


I hope you have some measure of peace now, yes?

Not really, After 17 years I still don't have any acknowledgement that my scoliosis is different and doesn't fit into any category.
What do they want me to do? Disappear?
So that their scoliosis classifications remain correct?
I am glad however that I don't have to push the research issue for the sake of others anymore though.
A little disappointed that I was wrong about my AIS assumptions, but its a load off my shoulders.

Sorry for the long reply.

Pooka1
11-12-2015, 11:52 AM
I've had plenty of x-rays over the years, you must've misunderstood me.

Yes I misunderstood. What were all the readings?


I know my biomechanics became altered because the work injury was one where I felt and heard 2 loud crunches in my back as it occurred similar to what you might feel from a chiropractor making adjustments.
There were pins and needles down my arms and legs and I couldn't hold things in my hand properly.

Pins and needles down the arms trace to the neck area, not where your curve is though.

How do you know the curve developed instantly at the time of your injury and wasn't there for years?

Isn't the curve much lower in your back than what could have resulted from your injury which if I recall correctly was your shoulder?


My curvature has progressed since it was diagnosed 17years ago, and even if it was still 11 degrees like it was back then I couldn't just get PT to straighten it one degree and not have scoliosis and move on.

How much has it progressed on the radiographs over time that your mentioned? How big is the curve on your latest radiograph?


- I'm not sure you're fully appreciating what I'm suggesting by altered biomechanics.

You're right. I am trying to understand what you are feeling and labeling as altered biomechanics as opposed to what you see on radiograph. How do you know your ongoing symptoms are related at all to the 11* curve in your TL spine? Maybe they are completely unrelated.


I'd have to firstly reverse the bad biomechanical loading (as it occurred after the injury) back to the point where the original structural failure occurred in order to 'unbreak it' so that it didn't have the altered biomechanics component anymore.
Only then could I attempt to bend it back (straighten it that one or more degrees).

I think you might be pleasantly surprised that PT might reduce your curve. Once you are below 10* you do NOT have a diagnosis of scoliosis. I think they have that cut off because many people have small curves that never cause a problem and are not related to syndromes like AIS.

I think you say you have a traumatic scoliosis, yes? I have never heard that mentioned anywhere which is in keeping with your understanding that your scoliosis is different.


Its unreliable and unpredictable.
I have 'okay' days most of the time (not really that painful, just kind of 'knotted up' and uncomfortable) and then I have a couple of bad days (some pain, stiffness and feeling lethargic), and it usually works like that approximately every few weeks.
Occasionally I'll have a string of really bad days. Like 'I just got run over by a train' bad days.
Neck pain, lower back pain and the whole thoracic region feeling like an ironing board, sometimes tingly, numb-ish, sometimes a light burning pain in my shoulder.
I wake up feeling like 'I just got taken out by a bus' most mornings, and it takes a few hours sometimes for my body to loosen up that I feel better able to do physical tasks.
Its hard to work or plan around in that I don't know when I'm going to have good days and bad days.
- Mostly uncomfortable, sometimes painful, sometimes really painful.
I cant really sit or stand for long periods of times and I cant work anywhere near as long hours as I had done before the work injury.
I'd say it probably knocked about a quarter to a third of my strength equivalent straight off the top just from the existence of the altered biomechanics.

These symptoms are consistent with many other conditions besides scoliosis. Have you been checked out for other conditions that have these symptoms? Have you asked a doctor if you might have early-onset DDD? People without scoliosis get that... I know somebody in that category. Maybe the 11 degree curve is FROM DDD. That would give you an answer about what type of curve you have.

The other thing is the precision of the reading. Your curve is probably anywhere between 8 and 14 degrees. You may not have scoliosis even without PT and then can concentrate on other possible causes of your symptoms.

Just some things that popped into my head. Please ignore if they are not helpful.

Good luck.

sjmcphee
11-12-2015, 08:27 PM
Hello Susan,
I wish I could be unique for something exceptional rather than being unique in a medical sense.
Its a pretty depressive and miserable badge of honour they've handed out to us, I must say.
How did the screw come to find itself in your spinal cord?
Was it the kyphosis worsening or did some fool put that screw there?

I heard in the news something about repairing spinal cord injuries, but I'm not sure how far they've come with it.
I truly hope your surgery is a success and brings you some improvements in your quality of life.

sjmcphee
11-13-2015, 01:54 AM
Hey Sharon,
My curve was 11 degrees a week after the work injury, in October 98.
I couldn't tell you exactly what my measurements are right now, but I do have a referral for x-rays which I'll get done soon.
My last x-rays were in 2012, and I believe from memory my curve was about low to mid 20's back then.
So my curve is progressing, but at less than a degree a year.

As for the pins and needles in my arms, I accept that the nerves are in the neck area, and I don't really know why this occurred when the injury was between T3 and T6, except to say that it did happen.
If I was to try to look for an answer I might suggest that if the result of the injury created a lordotic element in thoracic region then maybe that element had to come from somewhere, maybe it was from cervical region.

I do have a right thoracolumbar curve pattern and I know that in your mind it doesn't add up that the most pronounced area of my curve is not in the same area as where the injury occurred.
This whole altered biomechanics is a complicated thing and I've always struggled to explain it, but I do understand it from a mechanical point of view.

I don't think you can tell from an x-ray whether altered biomechanics exists or not.
In a 2d anterior/posterior x-ray all you see is the curve, and not a 3d representation of the relationship between motion segments.

I don't think that PT could improve my curve, my spine just doesn't work that way.
I did do some rehab maybe 10years ago, all it seems to do is aggravate the altered biomechanics.

I don't think I've ever used the term 'traumatic scoliosis' to describe my scoliosis, but I have heard the term before from a patient who was in a car accident.
I don't know the technical definition of the term nor whether or not it really applies in my case.

Regarding degeneration, in the very first x-ray I had, spondylosis was mentioned but it was only a very small amount and it was never again mentioned in the dozens of x-ray I've had since, that is up until maybe my last x-ray in 2012 where it was mentioned again, but only a small amount.

I am over 40 now so this small amount at my age is probably not anything other than normal.
My scoliosis has never been found to be associated with any other condition.
No DDD or herniated discs although the disc spaces did look to me a little narrow in that first x-ray just after the injury.
But disc spaces have always been documented as being normal.

I definitely don't fit into any existing scoliosis category.
But if I had to choose one, I'd say my spine more closely resembles an Adult Degenerative Scoliosis than Adult Idiopathic Scoliosis, simply because I had the 10 degree altered biomechanics and the small amount of spondylosis (probably insignificant) which probably carries more weight than an Idiopathic diagnosis of which the characteristics of rapid progression during growth, genetic predisposition, wedged vertebrae, and no altered biomechanics until 40 degrees we're not present in my scoliosis.

I see AIS as being more of genetic disorder, where I think my scoliosis and adult scoliosis are more of a biomechanical condition.

Finally, How do I see my scoliosis?

Well, there's the LLD of about 1cm apparently which I mentioned in my opening post.
Its not reasonable to suggest that the LLD occurred after the injury when I was already skeletally mature.
Its more reasonable to suggest that it occurred as I was growing.
So, I think as I was growing up, the LLD was developing, and as result a related spinal curvature was also developing.
My spine reached a threshold of its normal biomechanical function in relation to that curvature and then from there all it took was the specific stressful movement I placed on my spine to break it, and alter the normal biomechanical function of my spinal column.

Pooka1
11-13-2015, 12:29 PM
As for the pins and needles in my arms, I accept that the nerves are in the neck area, and I don't really know why this occurred when the injury was between T3 and T6, except to say that it did happen.

Scott why do you assume the curve wasn't already there and you just found out about it when you were evaluated for your injury? Isn't that much more likely? These small curves don't usually have symptoms as far as I know. Even the big curves sometimes don't have symptoms.


I do have a right thoracolumbar curve pattern and I know that in your mind it doesn't add up that the most pronounced area of my curve is not in the same area as where the injury occurred.

This is a known curve pattern in AIS.


My scoliosis has never been found to be associated with any other condition.

That makes it idiopathic scoliosis.


an Idiopathic diagnosis of which the characteristics of rapid progression during growth, genetic predisposition, wedged vertebrae, and no altered biomechanics until 40 degrees we're not present in my scoliosis.

No most IS cases stay small exactly like yours. Most are NOT large and most are NOT surgical. They progress during growth or not but they can stay small. You having a small curve have the most common AIS curve in terms of size though not in the most common location which would be thoracic. Where is the apex of your curve?

Your assumption about wedged vertebra is incorrect. My kids got to the high 50s* with their curves and had NO wedging. Wedging only occurs over time in untreated AIS as far as I know. The discs are wedged in early AIS but not the vertebrae as I understand it. Also, AIS starts with wedged discs as I understand it (perhaps in association with anterior overgrowth). Have you looked at your radiographs for wedged discs or vertebrae? It may not be obvious since your curve is relatively small.

sjmcphee
11-14-2015, 08:41 AM
I do think the curve was already there prior to the work injury, and yes I only found out about it after being evaluated for the work injury.
But what I am saying is that the work injury created a completely altered state of biomechanical function as a result of it occurring.

So that when the curve was developing with the LLD when I was growing, at 1, 2, 3, 4, 5, 6, 7, 8, 9, 10 degrees curvature, as it slowly got worse... It still kept its normal biomechanical function intact.

But at 11 degrees the injury occurred and it altered the normal biomechanical state in which normal spines work.

By 'Altered Biomechanics', what I mean precisely is a small structural failure in the spinal column and the result is instability between motion segments (vertebrae).
With that instability I'm not talking about something that stays the same now that its in an altered state, but something that changes - its dynamic.
It changes and it follows a system in the way it changes.

Remember I spoke about it years ago that immediately after the injury a small concave (the lordotic element in kyphosis) was sitting on a convex and that it was systematically changing to be a convex on top of a concave?
Well it wasn't just instability, but instability that was changing and having effects across the entire spinal column.
A vicious cycle of structural instability that doesn't just stay localized just in that one area.
Each time it systematically changes its affecting more and more of the spinal column.
Remember I said more of these changing concave/convex instances started to occur at the junctions of the spines natural curves thoracolumbar and cervical/thoracic.
Instability changing, following a system, slowly affecting my entire spinal column from a single localized structural injury?

If altered biomechanics had a brain, then the spinal column is trying to straighten itself and fix this structural instability...
But it cant, so it moves the instability to another area of the spinal column, and that instability working my spinal column is the reason my scoliosis is progressing.

So what I'm alluding to when I say 'altered biomechanics' is that the normal biomechanical function of the spinal column has become impaired with a mechanical system of instability (bad loading) within the spinal column.

What powers this 'instability' to change is the normal movements of the spine.
Flexion/Extension, Lateral Flexion and Rotation of the Trunk.

My spinal column is working in an altered manner than it did from 1 to 10 degrees.

So for me when you say just bend it back 1 degree,
It not just bending it back 1 degree, and for all intensive purposes its not the size of the curve that gives me grief, its the existence of the altered state of biomechanics in the first place.
You have to reverse all that bad structural loading it the way it occurred after the injury in order to reverse the bad loading back to the original 2 crunches of my work injury.
And then you would have to reverse that exactly the way it broke to bring the biomechanical function back to its normal functioning state.
Only then can you bend it back that degree, or 2, or 3... chop my leg insert and insert a cm of bone to repair the LLD and the entire spinal curvature should theoretically right itself.

Do you not understand that what I'm saying is from 11 to 12 degrees, to 13 to 14 to 15 etc, I was able to make complete sense of structural instability as it changed?

Look at the big picture and ask whats missing.
The thing that's missing is that none of you guys reported having any injury like I did or witnessed any of the changes I did so most likely the altered state of biomechanics that I've witnessed in my scoliosis doesn't exist in yours.
- This goes along with what the surgeon told me that altered biomechanics doesn't occur in AIS to 40 degrees.

What you have to understand Sharon is that:
1. The injury
2. The resulting state of altered biomechanics it created
3. My ability to comprehend that instability - are the 3 things that are non-negotiable.

Anything you come up with for me has to take these 3 things into account, because I did make sense of this altered biomechanical system and I know I understand it correctly.

So if you try to put me in the AIS group, (and you do make a good point with the curve pattern being a known AIS curve - gotta give you credit there) the message you are sending me, the one I am receiving anyway is that AIS must have 'altered biomechanics' and therefore I have the knowledge to cure all of you with AIS non surgically because I understand how the system of altered biomechanics work.

Do you get that?

For me to entertain the idea that I have AIS, then I'd have to see evidence that a patient with AIS has altered biomechanics the same as mine.
If they don't you have to accept that I don't fit into that category.

I've never actually looked at another patients back to compare btw.
This would be the best and easiest course of action.

Pooka1
11-14-2015, 11:13 AM
There are many people with small AIS curves like you have who get injured I imagine. That just follows from small curves being the vast, overwhelming, etc. majority of AIS curves. Only about 1 in a 1,000 cases is surgical as I recall.

Wouldn't they all be in the same boat as you?

It seems like it is all straight physics and the forces are locked in by the curvature degree, rotational degree, the plumb line, and gravity (acting straight down).

My main question is how has your analysis of the altered biomechanics helped your symptoms? How have you used the knowledge you gained to decrease your pain?

sjmcphee
11-14-2015, 06:49 PM
It seems like it is all straight physics and the forces are locked in by the curvature degree, rotational degree, the plumb line, and gravity (acting straight down).

Yep that's a fairly good description.

You've just made my day, I'm so glad you're starting to understand what I mean.
You don't necessarily have to believe me, I know that I cannot easily prove any of these things that happened to me.
But at least we are starting to find ourselves on the same page.


My main question is how has your analysis of the altered biomechanics helped your symptoms? How have you used the knowledge you gained to decrease your pain?

Not really any benefit at all, past the benefit of knowing why my back plays up and the reason why its slowly progressing.
But it has a bad side too though, trying to make researchers understand what happened and get answers that fit my circumstances has had an effect on my mental health.

Thanks for taking an interest in my situation.

Pooka1
11-14-2015, 06:54 PM
You don't have to thank me. Everyone's situation is interesting to me because it is a chance to learn something.

You have put many years of study into this and I just wish it would have helped with your symptoms. Have you given up on PT? That is said to be more effective than surgery for pain in many cases.

sjmcphee
11-18-2015, 08:20 PM
Hey Sharon,
I never really came to a full conclusion about whether or not PT was beneficial.
In some ways I do genuinely feel that strengthening back muscles does make the spinal column more resilient,
Whilst in other ways I'm undecided as to whether it plays havoc on the 'instability' of my particular scoliosis I spoke of earlier.

But like I said I never really got to the bottom of the question of whether or not AIS patients do have the 'altered biomechanics' component or not.
And likewise I never really got to the bottom of where my ability to make sense of where the 'altered biomechanics' component sits within the literature, and whether or not this knowledge or information applies to other patients or is beneficial to the greater understanding of scoliosis.

These are the questions that are unanswered.

Today I want to mention something I've been avoiding mentioning for many years, because I thought if I mentioned it you all really would think I've gone crazy.

Teeth. Today I'm going to the orthodontist to see if one of my front bottom teeth can be saved.

For many years I've thought that my 'altered biomechanics' and scoliosis has been having a very slow effect in the buckling of my teeth.
I think that because of the 'bad loading' in my spine (specifically around my neck) that it has a very slight affect on the muscles of the jaw.
That what's going on with the curvature on my spine correlates somewhat with the buckling of teeth in my mouth.
I'll have to take a picture and show you as evidence so you all don't think I've gone completely nuts.

In wondering whether anyone else has teeth that are slowly buckling I'm asking this question to see if there's any indication that other peoples scoliosis is in any way similar to mine.
It will give me some indication of whether or not altered biomechanics occur in other patients with scoliosis.

Pooka1
11-18-2015, 08:46 PM
There are syndromes that affect the skeleton. Teeth issues could be just another symptom along with a spine curvature. One doesn't have to cause the other.

As an example, my kids have some sort of connective tissue issue. They not only have a curved spine but also have ankles that collapse inward. The ankles did not cause the curve and the curve did not cause the ankles. They are both symptoms of the syndrome they have.

The both needed braces but had different orthodontic issues (despite being identical twins).

Biology/pathology is way more complex than we can even imagine.

sjmcphee
11-18-2015, 08:46 PM
Some of the members here may be aware that I own some scoliosis websites and domains.
I'm giving some thought as to what to do with these websites and domains in the long term.

One thing that I really tried hard to do was increase the quality of scoliosis information on the internet.
And there are numerous reasons as to why I wasn't all that successful.

What I envisaged was having a a website where the majority of the information was on actual web pages.
Informative videos, sophisticated imagery and animated presentations, etc.

I'm giving some casual thought about whether or not to start a gofundme.com campaign to raise a large amount of money to do this properly once and for all, (maybe $20,000 target) and to hand over all my web assets to a scoliosis patient organisation such as this one.
I like to finish the things I start and I hate losing.
What do other people think about this idea?

I've always thought that we are letting ourselves down by not having a more professional and informative web presence.

green m&m
11-19-2015, 01:24 PM
Some of the members here may be aware that I own some scoliosis websites and domains.
I'm giving some thought as to what to do with these websites and domains in the long term.

One thing that I really tried hard to do was increase the quality of scoliosis information on the internet.
And there are numerous reasons as to why I wasn't all that successful.

What I envisaged was having a a website where the majority of the information was on actual web pages.
Informative videos, sophisticated imagery and animated presentations, etc.

I'm giving some casual thought about whether or not to start a gofundme.com campaign to raise a large amount of money to do this properly once and for all, (maybe $20,000 target) and to hand over all my web assets to a scoliosis patient organisation such as this one.
I like to finish the things I start and I hate losing.
What do other people think about this idea?

I've always thought that we are letting ourselves down by not having a more professional and informative web presence.



If you really want to create a comprehensive patient education products you'll need a lot more than $20,000. That amount is barely enough to just plan out all the contents you wrote about, let alone actually create the assets.

Even if you succeed in developing assets, that is no guarantee any organization will use any of it. Generally, legal issues (Especially in the U.S.) will probably prevent supporting/using content that was not created by them or cannot be properly referenced according to the organization's guidelines. Each organization has their own set of rules and guidelines on how content can be created and sourced/referenced.

So you can continue to develop educational material but I don't know if any organization will back you or use that content. Is it your goal to just share what you know or have an organization use your content?

If you really want to do this, I'd guess your best bet is to develop your brand through social media and develop a following, not just blindly create content expecting people to find it.

burdle
11-26-2015, 06:34 AM
Hi,

I am not sure what you are trying to achieve.

There are websites out there already and support groups on Facebook etc.

The problem with social media is that there is no control. For example look at Scoliosis Warriors of Facebook- it looks like a support group but actually it is run by ScoliSmart a group of chiros who claim to be able to prevent and cure scoliosis. If you are allowed to join the group you will see lots of posts from Scolismart rubbishing fusion surgery and scaring people with out of context and outdated studies that suit their purpose while not providing any evidence of their own to support their own methods - if anyone like me challenges asking for research you get removed from membership. There are plenty of people on there who don't realise this- Scoiotic sufferers still post about surgery and get replies from fellow sufferers ( never Scolismart), but the replies are all subjective. Scolismart constantly post their rubbish and thus develop an audience of vulnerable people who might try anything ( provided they pay)


One of the problems as I see it is with the definition of Scoliosis itself. Unfortunately it covers too broad a spectrum from very small curves that do not cause a problem to large surgical level curves that do. We are all lumped together on social media and so clear objective advice is difficult to find.

I look to the official medical bodies to be more proactive e.g. SRS- they do have good definition about treatment paths but won't go as far as to jump in and demand excellence from outfits like Scolismart and create public debate which in the long run would protect scoliotics as well as help them.


I have no problem with people trying new methods of treatment but I do object to people doing so without proper research and evidence while making sure they make loads of money at patients expense -

I agree with you that we need informative websites but without clear guidance and a supported treatment path it is difficult to see how we are going to get it.

Pooka1
11-26-2015, 09:12 AM
Burdle, nice post! I admire your reasoning on this stuff.

You wrote:


I look to the official medical bodies to be more proactive e.g. SRS- they do have good definition about treatment paths but won't go as far as to jump in and demand excellence from outfits like Scolismart and create public debate which in the long run would protect scoliotics as well as help them.

I want to say that not only are SRS surgeons not demanding excellence from Clear/Scolismart Chiros but they allow themselves to be photographed in public with them. I don NOT understand it. It lends an air of respectability to chiro that is has not earned on the science front and the surgeons know it. One such surgeon is Br. Betz. One of our members her knows him very well and for many years. I wonder if she would ask him about this because it looks crazy.

burdle
11-26-2015, 09:57 AM
I want to say that not only are SRS surgeons not demanding excellence from Clear/Scolismart Chiros but they allow themselves to be photographed in public with them. I don NOT understand it. It lends an air of respectability to chiro that is has not earned on the science front and the surgeons know it. One such surgeon is Br. Betz. One of our members her knows him very well and for many years. I wonder if she would ask him about this because it looks crazy.

Hi Pooka1,

I am in the process of contacting Dr Betz on this matter - trouble is I cannot find an email address from him so I will write care of his hospital and hope he gets it. I am in UK so I don't hold out much hope in the way of a reply. I am astonished at the photograph and also the fact that Stitzel's posts on scolismart really rubbish fusion surgery but Dr Betz does fusion surgery not only for people for whom VBT is not an option but also on those for whom VBT has failed. This is never mentioned by Stitzel and I really wonder if Dr Betz realises this.

Pooka1
11-26-2015, 10:13 AM
Hi Pooka1,

I am in the process of contacting Dr Betz on this matter - trouble is I cannot find an email address from him so I will write care of his hospital and hope he gets it. I am in UK so I don't hold out much hope in the way of a reply. I am astonished at the photograph and also the fact that Stitzel's posts on scolismart really rubbish fusion surgery but Dr Betz does fusion surgery not only for people for whom VBT is not an option but also on those for whom VBT has failed. This is never mentioned by Stitzel and I really wonder if Dr Betz realises this.

Yes exactly! I am perplexed by that photograph. Maybe the chiros didn't admit they were chiros??? Clear morphed into Scolismart because they were not accumulating evidence for efficacy and so just changed name as far as I can tell. Scolismart will morph into something else once it becomes obvious there is no evidence for efficacy.

Maybe the people on this forum who are in contact with Dr. Betz will ask him. I wonder if he knows his picture is posted publicly with those particular chiros.

burdle
11-26-2015, 12:24 PM
One of the reasons that Stitzel left CLEAR was because the Traction Chair that they used has disadvantages results on the rotation of certain thoracic curves- it made them worse!!!

Stitzel posted on Scoliosis Warriors that he had demanded that CLEAR publish the results and that they threatened him with a lawsuit. It is all very odd and I think was just a gesture on his part. However on the website fix.scoliosis.com which is a CLEAR web site he is still posting etc.

All very strange - this was his post about an interview he claimed he had with Fix.scoliosis (who are behind CLEAR) that he put on Scoliosis Warrior ( Facebook)


Sitzel is the "I" below...

There still seems to be some confusion over the clinical data on the STC which we published about a year ago. Here is an interview I did on the study that hopefully will clear (pun intended) things up.....

FixScoliosis Interviews Dr. Clayton J. Stitzel about the Scoliosis Traction Chair

Dr. Stitzel was one of the chief developers of the Scoliosis Traction Chair in 2004, was a lead instructor for the CLEAR Scoliosis Institute for 5 years, and served as one of the directors and board of advisors for over 10 years.

FixScoliosis: What was your role in the initial development of the Scoliosis Traction Chair?

Stitzel: The concept of a traction chair for the treatment of scoliosis is certainly not a new one. In fact, we reference a very similar concept from the 17th century in the research paper we recently published.

The novelty of this was chair model was the adjustable arms, ratchet correction system, and the whole body vibration, which had never been incorporated before. The initial models were modifications of existing chairs made by hand exclusively by Dr. Dennis Woggon and my contribution came some time later as we moved away from modifying existing chairs and building chairs specifically for the purpose of treating scoliosis.

The final design was created in 2004 and very minor changes have been made to the current design since that time. It is important to note that our study not find any problems in regards to the design of the scoliosis traction chair, as some of the patients in the study did improve while using the chair, but we did find concerns with the application of the scoliosis traction chair in curves above T11 in particular.

FixScoliosis: Why did you decide to do a restrospective study of the long-term scoliosis traction chair results?

Stitzel: The Scoliosis Traction Chair has been in clinical and home use for over a decade and no data on either exists. Some of the doctors in the organization began to question the effectiveness of the ratchet system to de-rotate the thoracic spine, so several of them began to shoot “in chair” x-rays to determine its effectiveness in the late fall of 2011.

FixScoliosis: .And the results of those “in chair” x-rays?

Stitzel: Well, as claimed by the manufacturer, the “in chair” x-rays demonstrated a reduction of the cobb angles, but it also clearly indicated in certain cases the compression of the rib cage was forcing the pre-existing adverse spinal rotation in the thoracic spine to increase.

Obviously, the doctors found this disturbing and immediately began looking into it, but for reasons I can’t discuss, we decided not to pursue it out of fear of reprisal. I and the other members who conducted the research article left the organization January 1, 2014 and made investigating the potential increase in thoracic rotation in the Scoliosis Traction Chair a priority research project.

FixScoliosis: Were you surprised by the results of the data that was collected?

Stitzel: Actually no, we had a pretty good idea of what was happening based off the preliminary “in chair” x-rays back in 2011. A few of us even started to look into ways to mitigate the negative effects of the Scoliosis Traction Chair on thoracic spine rotation and even stopped selling them to patients for home use, all-be-it against the current regulations of the CLEAR Scoliosis Institute.

What we did find a bit shocking was how clear the distinction was between the patients with curve apexes above T11 and the patients with curve apexes below T11 who used the chair in the office and at home. All, but one of the cases with curve apexes above T11 demonstrated increase thoracic rotation and saw their curves increase by an average of 16° over the next 6 months. In stark contrast, all but one of the patients of patients with curve apexes below T11 demonstrated no increase in thoracic rotation and saw their curves improve by an average of 9° over the next 6 months.

Given the small sample size and short outcome assessment period (6 months) of our study, It still isn’t proven that increased thoracic rotation seen in the “in chair” x-ray is directly correlated with poor long term outcomes in our study.

FixScoliosis: Have you been contacted by the CLEAR Scoliosis Institute or the manufacturer of the Scoliosis Traction Chair (Vibe For Health) since the study has been published?

Stitzel: Since the article has been published? No. However, I personally reached out to both the head of the CLEAR Scoliosis Institute and the CEO of Vibe For Health in regards to our concerns and requested an immediate moratorium on the use and sale of Scoliosis Traction Chairs for the treatment of scoliosis curvatures above T11 until they conducted their own investigation and research into the matter. If a legitimate concern existed, I requested they publish the results of the original investigation and any follow up research demonstrating the elimination of the increase thoracic spinal rotation caused by the scoliosis traction chair to ensure patient safety.

FixScoliosis: Did they respond to your request?

Stitzel: Actually they did respond in the form of a “cease and desist” letter from their attorney. We were very disappointed and made the decision to move forward with publishing the data in the interest of public safety if they declined to voluntarily impose the moratorium. I’m hoping I won’t be hearing from their attorney again in regards to the study or this interview. I wouldn’t be surprised if some effort to discredit the scoliosis activity suit (a newly developed neoprene suit for scoliosis home rehab) is made as well.

FixScoliosis: As lead author of the study, what are your recommendations for patients who are currently using a scoliosis traction chair in an office or at home?

Stitzel: There seems to be a very clear correlation between curves above T11 displaying adverse thoracic rotation in the Scoliosis Traction Chair and poor long-term outcomes, so I would recommend having their doctor re-evaluate any “in chair” x-rays for increase thoracic rotation, not just cobb angle improvement and given that virtually 100% of the patients (in our study's small sample size) using scoliosis traction chairs with curve apexes above T11 saw their curvature get worse, I would be very concerned about using it at all without proper supervision.
Any parent or patient who is uncomfortable with using the scoliosis traction chair after learning of the concerns raised in our study should contact their treating physician or the scoliosis traction chair manufacturer immediately.


Clayton Stitzel's photo.




























..

Pooka1
11-26-2015, 12:45 PM
Thanks for posting that.

It is a symphony of nonsense of course. Stem to stern.

Nobody involved is doing any research. Where is Stitzel's study published? I am guessing it is on his web page and not in an peer-reviewed journal.

The T curves got worse because they are the ones that tend to get worse. The L curves didn't because they progress less compared to T curves, at least in adolescence. None of this stuff is is done in a controlled setting. None of this stuff is long-term. It is ALL nonsense.

Pooka1
11-26-2015, 01:03 PM
Here's the chair paper in some new journal...

http://www.clinicsandpractice.org/index.php/cp/article/view/642/pdf_4

Here's the Woggoni complaining about it...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274490/

Here is Morningstar's response...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274492/

Pooka1
11-26-2015, 09:31 PM
Hi Pooka1,

I am in the process of contacting Dr Betz on this matter - trouble is I cannot find an email address from him so I will write care of his hospital and hope he gets it. I am in UK so I don't hold out much hope in the way of a reply. I am astonished at the photograph and also the fact that Stitzel's posts on scolismart really rubbish fusion surgery but Dr Betz does fusion surgery not only for people for whom VBT is not an option but also on those for whom VBT has failed. This is never mentioned by Stitzel and I really wonder if Dr Betz realises this.

Here is his contact info...

http://www.spineandscoliosis.com/the-team/randal-r-betz-md/

I will try to find out more about the alleged association between legitimate doctors and the Clear chiros.

burdle
11-27-2015, 07:44 AM
Here's the chair paper in some new journal...

http://www.clinicsandpractice.org/index.php/cp/article/view/642/pdf_4

Here's the Woggoni complaining about it...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274490/

Here is Morningstar's response...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274492/

Thanks for posting- I am a bit confused.

The reply from the Woggons seems to criticise the Traction Chair study done by CLEAR but The Woggons are founds of CLEA?. The reply from Morningstar and Stitzel rejects their criticism but Morningstar and Stitzel have now left CLEAR and become part of Scolismart but have not taken the Traction Chair with them and now criticise the use of it by CLEAR?

Pooka1
11-27-2015, 09:08 PM
Thanks for posting- I am a bit confused.

The reply from the Woggons seems to criticise the Traction Chair study done by CLEAR but The Woggons are founds of CLEA?. The reply from Morningstar and Stitzel rejects their criticism but Morningstar and Stitzel have now left CLEAR and become part of Scolismart but have not taken the Traction Chair with them and now criticise the use of it by CLEAR?

I don't know exactly what is going on. I think Stitzel has claimed to have invented the chair in his basement at one point but I could be wrong.

I think Stitzel joined the Woggons at Clear at some point and them left. Stitzel continued to use the chair at his Clear clinic. When he left Clear I guess he couldn't take the chair with him and "serendipitously" noticed something bad about the chair, the same chair he had been using and CHARGING patients for and SELLING it to them at several thousand dollars a piece I think. This is exhibit A thru Z on why chiros should not be allowed to treat scoliosis. When I screw up the interest I will review the article, comment, and response.

Pooka1
11-28-2015, 05:57 PM
Okay I read the paper. Apparently, the 15 cases were the only people who followed the protocol of:


i) they used the scoliosis traction chair as part of their scoliosis management; ii) they received an in-chair radiograph to evaluate positioning and effect; and iii) they presented to the office for a 6 month follow-up exam. A total of 15 cases met this criteria and were therefore used for this present study

They have had hundreds of patients and only 15 followed the protocol. If everyone did the first two things then they lost all but 15 patients to follow up at 6 months. Hundreds of people did not return at 6 months apparently. That's an important result right there.

Since they were all the cases that met the criteria, they are by definition "consecutive." So I don't understand why they said they were consecutive. They should have said they selected all cases that met these criteria.

The main thing that makes this unpublishable in my opinion is the lack of a control group. Because the results conformed to known factors (Risser, type of curve) affecting progression, there is no evidence that anything the chair did or didn't do affected any outcome WHATSOEVER. They are assuming just because the kids were put in chairs means it must have had some measurable effect on outcome. In my opinion, the chair can't possible help or hurt progression potential whether or not it has measurable de-rotation or not for 30 minutes a session, twice a day for a few weeks (or whatever). Because they didn't have a control group, and because it was only 15 cases, and because only 15 kids out of hundreds followed the protocol, nothing can be said either way. The results don't apply to anything.

After I recover a little, I will force myself to read the complaints from the Woggoni and the response from Morningstar but it really doesn't matter what they say... the small sample size and lack of a control group make this unpublishable. They are arguing chair placement on the Titanic deck at this point.

Kevin_Mc
12-10-2015, 04:35 PM
Hello!

Interesting development at the end of this specific thread topic.

I first came across Morningstar's work and development of CLEAR back in the day. And while I didn't like some of the methods, I felt like Morningstar's discussion was very good. (Assuming I am remembering all of that correctly). The thing that really always upset me about it was that the article stated that while no evidence could be found to indicate spinal adjustment in AIS patients, they felt like adjustment was still warranted. After I picked up and reassembled the parts of my exploded head, I, more or less, left the paper alone.

It seems to me that Steizel and Morningstar and perhaps others started having doubts about the traction chair. And then the fall out happened. And now they did a retrospective study on the outcomes of the traction chair. They seem to be concerned that it might make some curves worse. I'm not sure what kind of other methods they used on each patient, e.g. strengthening of the muscles, but there is quite a bit of research out on other joints about stretching without strengthening. Basically, if you give a joint increased range of motion without also giving the joint a way to support itself, you set that joint up for injury. Curves above T11 would be VERY susceptible to that as the rib cage acts like an anchor and so engaging those muscles high on the spine needs to be done with.... rigor.

Anyway, interesting developments for sure. I only wish hundreds of patients hadn't been misled, possibly made worse and money wasted.

Pooka1
12-10-2015, 07:01 PM
As of 2011, the Woggoni were selling the chair for $3,795.

https://www.clear-institute.org/Forums/tabid/55/aff/1/aft/808/afv/topic/Default.aspx

I wonder how many people would fork out that money if they knew there was NO evidence it helped anyone avoid surgery. How do chiros sleep at night?

Pooka1
12-10-2015, 08:56 PM
Anyway, interesting developments for sure. I only wish hundreds of patients hadn't been misled, possibly made worse and money wasted.

So glad you are back, Dr. McIntire. Hope you have been well.

I just wanted to ask a little question about your comment about the chair possibly making things worse. How likely is it that ANYTHING a kid does for a 1/2 hour a day, twice a day, will affect the curvature trajectory? I mean when we have some kids faithfully wearing their braces 23/7 for years and still needing surgery, I seriously doubt the chair ever made someone surgical who wasn't destined to be so even if the rotation was worse for those two half hours.

Kevin_Mc
12-11-2015, 11:50 AM
So glad you are back, Dr. McIntire. Hope you have been well.
Been well enough :> Job market is tough. They shuttered GSK R&D. Academia wants you to come with an RO1 and teach eleventy hours/semester and industry wants you to have industry experience and to have your best friend in charge of hiring. So my new job is being a home technician and professional Daddy. Turns out, I'm pretty good at both! :)



I just wanted to ask a little question about your comment about the chair possibly making things worse. How likely is it that ANYTHING a kid does for a 1/2 hour a day, twice a day, will affect the curvature trajectory? I mean when we have some kids faithfully wearing their braces 23/7 for years and still needing surgery, I seriously doubt the chair ever made someone surgical who wasn't destined to be so even if the rotation was worse for those two half hours.

The same question was leveled at our work by H. Weiss. And it's a good point. Our response to him was based on muscle physiology. The idea behind therapy is to change the soft tissue structures so that they stabilize/function better. (This of course assumes that the main driver of the curve isn't something like vertebral overgrowth and is more biomechanical in nature). Exercising a muscle 3/week will make it stronger and more functional regardless of how effective it may or may not be on the curve trajectory.

With the chair I can only see it negatively impacting the curve through increasing range of motion through ligament laxity, i.e. making it less stable. If you were to stretch the hamstrings of one leg, and not the other, for a 1/2 hour 2x/day, you would notice a big difference in flexibility between the two legs in a couple of weeks. So I would expect to see something similar for something like the traction chair. Admittedly, I'm not sure how the chair works, but knowing a little bit about traction, it can definitely increase motion and would seem to have the potential to cause laxity, with a focus on the apex. If the muscles and other soft tissue structures have anything at all to do with curve stability (which I believe they do, regardless of progression risk) then reducing those structures' ability to maintain a rigid spine could definitely impact the curve.

I think you're correct though, that if a patient was destined for surgery, I'm not sure if the chair would necessarily make a difference. OR rather, if someone was NOT destined for surgery, I'm not sure if the chair would have pushed them over the edge. But I can hypothesize a physiologic mechanism that could increase the curve.

Pooka1
12-11-2015, 08:53 PM
Been well enough :> Job market is tough. They shuttered GSK R&D. Academia wants you to come with an RO1 and teach eleventy hours/semester and industry wants you to have industry experience and to have your best friend in charge of hiring. So my new job is being a home technician and professional Daddy. Turns out, I'm pretty good at both! :)

Yes I am getting the vibe that it is much harder than it used to be. My twins are biology majors and one wants to go into research. I have to wonder how many jobs will be available when she gets out. Have you considered anything in the Federal Government?


The same question was leveled at our work by H. Weiss. And it's a good point. Our response to him was based on muscle physiology. The idea behind therapy is to change the soft tissue structures so that they stabilize/function better. (This of course assumes that the main driver of the curve isn't something like vertebral overgrowth and is more biomechanical in nature). Exercising a muscle 3/week will make it stronger and more functional regardless of how effective it may or may not be on the curve trajectory.

Yes I think the idea behind PT and bracing are sort of opposite in this regard. Bracing is trying to overcome abnormal bone growth even at the expense of muscle strength. PT is trying to overcome abnormal bone growth through building up of surrounding muscle.


With the chair I can only see it negatively impacting the curve through increasing range of motion through ligament laxity, i.e. making it less stable. If you were to stretch the hamstrings of one leg, and not the other, for a 1/2 hour 2x/day, you would notice a big difference in flexibility between the two legs in a couple of weeks. So I would expect to see something similar for something like the traction chair. Admittedly, I'm not sure how the chair works, but knowing a little bit about traction, it can definitely increase motion and would seem to have the potential to cause laxity, with a focus on the apex. If the muscles and other soft tissue structures have anything at all to do with curve stability (which I believe they do, regardless of progression risk) then reducing those structures' ability to maintain a rigid spine could definitely impact the curve.

I have to wonder how much traction they really were applying versus playing at the idea of traction. I hope they were playing because they are lay people and shouldn't be messing with actual traction. There are straps that pull the curve in the opposite sense which I think were causing increased rotation for those short periods of time. I think b races may avoid this increased rotation through forcibly kyphosing the spine. The straps can't do that and so must have been increasing the rotation. But again, I seriously doubt it matters. Surgeons maintain that back packs and slouching and such do not cause or increase curves so how can this chair nonsense do it?


I think you're correct though, that if a patient was destined for surgery, I'm not sure if the chair would necessarily make a difference. OR rather, if someone was NOT destined for surgery, I'm not sure if the chair would have pushed them over the edge. But I can hypothesize a physiologic mechanism that could increase the curve.

If lax soft structures were in play, why don't all people who have this condition (hypermobility, etc.) get scoliosis? I realize that is a different question form people who have scoliosis who have soft tissue laxity may exacerbate their curve absent muscle building to offset the laxity. It just seems like a bunch of known and unknown unknowns.

Dingo seems to have stopped updating the group this year on his son's scoliosis while doing several years of torso rotation. I hope he checks back in at some point.

Most of the other people doing PT have dropped off the radar also.

flerc
01-05-2016, 08:42 AM
Hello!

I'm not sure what kind of other methods they used on each patient, e.g. strengthening of the muscles, but there is quite a bit of research out on other joints about stretching without strengthening. Basically, if you give a joint increased range of motion without also giving the joint a way to support itself, you set that joint up for injury. Curves above T11 would be VERY susceptible to that as the rib cage acts like an anchor and so engaging those muscles high on the spine needs to be done with.... rigor.


Great! Do you have a record of other relevant facts like this?

Kevin_Mc
01-08-2016, 12:41 PM
If lax soft structures were in play, why don't all people who have this condition (hypermobility, etc.) get scoliosis?

I guess I only think soft structures are in play where progression is involved. I suppose I'm somewhat agnostic when it comes to the etiology. But I can see that hypermobility would very easily contribute to progression.



It just seems like a bunch of known and unknown unknowns.



There's the understatement of the year! :)

sjmcphee
01-12-2016, 07:47 PM
Hey everyone,
Sorry I've been gone for a little while..
I can see that quite a few people have taken the time to add comments, I haven't looked at them yet.

All I can say is that sometimes, scoliosis gets the best of me on an emotional level and its all I can do to just run away and not deal with it at all sometimes.
Its been a real tough journey for me, knowing so much about my scoliosis, but never getting any valid answers or acknowledgement from those that claim to know, but instead leave me without even a half valid diagnosis or understanding of my scoliosis or even a defined scoliosis category to belong to.

Anyhow, I hope everyone had an enjoyable Christmas and New Years and that scoliosis didn't get too much in the way of enjoying yourselves over the holidays.
I'll read all of your messages and respond to your thoughts and ideas over the coming day.

- Scott

sjmcphee
01-13-2016, 07:31 PM
Ok, firstly a quick note about my teeth.
The orthodontist didn't seem opposed to my suggestion that the bad loading occurring at the cervical / thoracic junction and as part of the 'altered biomechanics' occurring from my scoliosis is having an effect on the loading of my jaw and as a result the slow slight buckling of my teeth.
I started with "I know this is going to sound crazy..." but I didn't detect any disbelief or patronizing as I nervously laid it out.
He even said "Everything in there is interconnected and what you are suggesting is not disbelievable", or something to that effect.
Better than the response from my dentist a few years back who outright rejected the idea.

- There's a good reason why I never EVER mentioned anything about teeth before.
And it's because I thought that doing so would give others reason to doubt me about the events of my scoliosis.
I know that plenty of people that don't have scoliosis get crooked teeth, so I was always putting myself out there on thin ice by mentioning it.

I've told you guys that in relation to my scoliosis there was a structural / biomechanical incident that occurred when my curve was around 11 or 12 degrees and this event created a biomechanical system of instability within my spinal column.
I was able to gain an extraordinary amount of knowledge and understanding in relation to this underlying system of biomechanical instability though I was never able to adequately share this knowledge with anyone, to be fully scrutinized.
As a result, after 17 years I still don't know if this 'altered biomechanics' knowledge which is fundamentally well understood by me is relevant to other scolioses, or just applicable only in my case.
This is the curse of my particular scoliosis, that I know a lot about it but I don't know if or how that knowledge applies to others.

The system of instability occurring within the 'altered biomechanics' system of bad biomechanical loading occurring in my spinal column follows a kind of a path.
I've mentioned previously that mostly I have good days and then its followed by a run of a few bad days and then it goes back to good days, like a subtle cycle.
Then sometimes, I'll get really bad days.

Whats actually going on here relates to the system of biomechanical instability of my altered biomechanics.
The bad loading of my scoliosis works in cycles, and the bad loading during a cycle gets to a point where in order to continue the path of bad loading it needs to go through this 'transition period' where there is a kind of reduction in overall stability.
- And so I feel like crap for a few days.. lethargic, stiff and achey.

At the time I wrote the first post on this thread I was going through one of these 'transition' periods, but it was one of the ones I referred to when I said sometimes I have REALLY BAD days.
I think this transition period was the BIG ONE that I had mistakenly tried to identify many times previously as the initiation of spinal rotation.
The reason I think it was the initiation of spinal rotation is because I picked up on some subtle but fundamental biomechanical changes that I'd never seen before in 17yrs of watching my scoliosis progress.

Sharon, do you remember how I used to always do my head in trying to explain what I saw within my scoliosis with you (Lol) , but that I said that after the injury occurred I saw a small concave and convex within the space of a couple of vertebrae around T3 to T6 and that it would systematically change from a concave on top of a convex to a convex on top of a concave (and that's how I knew a system of instability existed as a result of that injury) ?
Do you remember how I said that this bad loading started to affect other regions of the spine and that similar instances of these concaves and convexes were created at the junction of the spines natural curves - cervical / thoracic and thoracolumbar?

Well, after 17years I saw the loading on all these junctions change significantly.
Instead of being a concave on top of a convex (for example) meeting at the junction, there was a concave or convex going through the junction.
I take that to be a significant change, and I believe its the beginning of spinal rotation.

The point of telling you all of this, going back to my damn teeth, is that the tooth I'm worried about losing is one of my front bottom teeth - one of the middle ones.
Its slowly been pushing forward over the years and the gum has receded down the bottom of the tooth, so there's not a lot holding it in at the front.

The moral to the story is that (I think) the instability I was feeling around that center bottom tooth was correlating with the transition period into spinal rotation.
I need x-rays, I'll get them done real soon.

Sharon, do you remember you asked me a while back about my scoliosis why the apex of the curve is different to the location the injury started?
I've been wanting to tell you that the injury just crated the imbalance, and load, where its taking it from and giving it to is a tricky thing.
Its basically taking it from the regions of the spine where the main concaves are and giving it to the area of the spine the main convexes (apex of the curve) are.
But its tricky, and complicated, and the ribcage does act as a kind of anchor (excellent description) in this process.
And this is why the location of the original injury is not necessarily the same location as the apex of the curve patterns curve.

Pooka1
01-13-2016, 07:58 PM
Scott, we had a lot of conversations and it is hard for me to remember them individually. You have a complete hypothesis of what is going on with your skeletal system that you figured out so I think that helps you.

I hope when you get the radiographs that you don't have any progression. How many years has it been?

sjmcphee
01-13-2016, 11:37 PM
Before getting into the scoliosis traction chair issue I want respond to the people who commented in regards to scoliosis websites.
(I've always believed this topic was deserving of a forum thread of its own.)

[In the past I've added links to the scoliosis websites I built, but I got in trouble from Linda for doing so. She accused me of operating scoliosis sites for financial gain. Because of this, and without any support from others I eventually lost interest and stopped building and maintaining the websites anyway. I'm going to add the links to some of the websites I built, I don't think it matters now as I don't maintain them and am offering to give them away to suitable interested parties but would please ask Linda that if she still thinks that by naming the websites I built I'm breaking the rules and she wants to delete my entire post as she's done before, could she please instead just remove the links. I think part of her objection to the listing of my websites was because I was also discussing, putting forward and promoting contentious research at the time and so her objections were understandable. She was only trying to keep the integrity of the information on this forum, just as I was trying to work towards the overall integrity of scoliosis information on the internet.]

My first efforts to build a better scoliosis website began back sometime prior to 2003, before I joined this forum.
I hired a guy over the internet to build it, but there were heaps of issues with content management systems back in those early days and I don't think the guy I hired had the required expertise and the site never really came together the way I wanted it to.
It's funny though, even the top menu and layout I wanted to access content back then is probably far better than even this scoliosis.org website is today. (No offense)
I got one of my younger brothers friends to try to build a website for me, but his webskills weren't all that good either so it never eventuated.
I did a fairly good job planning the website and contents back then, but basically I gave up because I didn't have the webskills to build what I wanted.

Because I had scoured the internet looking for information about scoliosis (in relation to my own scoliosis) I was well aware even back then of how fragmented the information on the internet was, and how much patients were open to exploitation by people claiming to have successful alternative treatments.
The only people able to pay for scoliosis web-advertising were the ones making money from patients, and so there was a tendency of patients to find info during web searches that would send them in a direction where they would spend money, not necessary get good quality unbiased information which was what the patient actually needed.
This was a large part of the motive for me wanting to build a comprehensive scoliosis website, (for the sake of patients) but it wasn't the only reason.
I was also looking to put myself in a position (politically) where I would have some sway with the researchers and 'powers that be' that they wouldn't deny looking into my scoliosis research.
This was a part of a selfish effort to try to find a way to cure myself of the scoliosis, though I thought that all patients would ultimately benefit from me bringing my research ideas forward.

A few years later, sometime around 2010, I made a renewed effort to build the scoliosis website I wanted only this time I made the effort to get the webskills I needed myself.
This time I was able to mostly overcome the technical issues of building good websites myself (though I'm rusty now) and I completed all the work of planning out webpages and content for proposed scoliosis websites but I failed for other reasons.

Over the years I'd become aware that a lot of domain names were being purchased by domain traders for displaying ads and domain resale value and I felt like those domains should at least be in our (the patients) hands so that if anyone was to profit, it was us and we could use that money towards buying more domains and building better informative websites and that we would be able to have some control over where people find information and are sent by ads.
The idea was that this would allow the project to effectively fund itself, though I freely spent plenty of my own money on domains, hosting, templates, extensions and training etc.
I used my newly earned webskills to plan and build all sorts of scoliosis websites and purchase lots of scoliosis related domains and I was going to use my web-design developer memberships which allowed me to use and build unlimited template websites to help other scoliosis websites improve their sites as well, but no-one was really interested.
I felt as though the whole state of scoliosis information on the internet resembled a jumbled unorganized mess, and that we weren't doing enough to help our own cause by the poor quality of websites and information.

These poor quality websites said to the world "We don't care about ourselves, so why should you?"
The message I wanted was "We the people care about our plight and proactively take control of our situation".
A message that said to the researchers and scoliosis governing bodies "Remember the reason you're here is for us".
(Remember I saw this as a tool or a means to get what I wanted, so I genuinely wanted it to be good)

I felt that we could use the increased 'professional branding' and quality of a more professional web presence to in turn help generate a whole range of fundraising activities that would really take us forward and benefit us.
Fundraising activites like the other BIG foundations for health conditions such as Cancer and Leukemia foundations generate. Prize homes and Car raffles in Malls and things.
We could ask celebrities with scoliosis to help our cause and help gain exposure for fundraising activities.

I felt that ultimately BY NOT DOING THESE THINGS, we're selling ourselves short; contributing to our own plight; making things needlessly harder for ourselves etc.. etc.. etc..
Don't think about what we could gain by doing these things in the future, focus on what we are losing right now now each and every day because we haven't already done it.

sjmcphee
01-14-2016, 12:25 AM
Scott, we had a lot of conversations and it is hard for me to remember them individually.
You have a complete hypothesis of what is going on with your skeletal system that you figured out so I think that helps you.
I hope when you get the radiographs that you don't have any progression. How many years has it been?

Hey Sharon,
I know you deal with a lot of patients and their stories, its ok that you forget the details, I'm glad for your efforts and that you take the time to respond.
Yes I know precisely whats going on with the biomechanics of my scoliosis, I have mostly since the injury originally occurred all those years ago, that's the thing that's always gotten me into trouble, ranting and raving about it.
But ultimately I don't have any idea of whether what happened to me applies in any way to others, that's the 64 million dollar question, the curse of knowing too much.

I made a New Years decision (it wasn't really a resolution; I wasn't that dedicated) that I'm going to give the doctors, surgeons, researchers one last crack with the research before I give up entirely.
But it's not going to be a big effort if I don't get anywhere with it, my plan right now is more about trying up loose ends..
Finding someone else to pass the websites onto, giving my scoliosis books to a patient organization, and doing the best I can to close the book on this research thing without getting dragged into it and doing my head in over it.
I feel as though after all these years I have finally at least, figured out how to ask the right questions and express my ideas better, so I should at least try one last time before I give up.

I always have progression, but its slow - less than a degree a year not rapid like AIS. I expect coming x-rays will show a curve in the mid 20's.
I think I'll likely be able to show that progression has occurred at a faster rate over the past 17 years than it did during the first 25yrs before the injury where it only progressed to 11 or 12 degrees.

Pooka1
01-14-2016, 07:06 PM
Scott, if you understand your scoliosis, I would hope that would comfort you.

The researchers are probably concentrating on keeping people off the operating table and out of braces (and out of the clutches of chiros). You will likely never be facing that. There is only so much money and the few dollars there are for scoliosis research should be to find effective non-surgical and non-brace treatments for people who need treatment.

Please consider this. You are not dependent on researchers if you have your own theory.

sjmcphee
01-15-2016, 11:14 AM
Hey Sharon,
I used to think that understanding how my scoliosis works gave me peace of mind, but I am starting to consider the opposite to be more the case.
Having this 'knowledge' has been nothing but an unwanted burden, its given me nothing but grief and no end of trouble.
It might've been better if I never paid such attention to what was going on within my spinal column and I remained ignorant.

There's two areas of scoliosis interest I've focused my efforts on.
One is the quality of scoliosis websites and information on the internet, and the other is that I understand how the biomechanics of my scoliosis works, whatever that amounts to.
Neither of these things place any burden on the goals you stated researchers aim to achieve, in fact they both actually help to achieve those very same goals.

You talk about there being limited money; this might be the current status qua but I reject the idea that this is how its supposed to be.
I think there's a wealth of untapped money that could be accessed to more easily achieve these goals, but the opportunity to do so is being wasted by a of lack of leadership and vision.
Quite frankly it's incompetence, doesn't anyone understand branding, marketing, promotion and fundraising?
All you have to do is build a professional web presence and then embark on a fundraising campaign that included some marketing and promotion through social media.
As your pool of funds increases you can embark on bigger and better fundraising ventures that no longer target the scoliosis community so much but instead focus on the general public.

In Australia where I live, all the big name charities sell tickets to prize homes. https://endeavourlotteries.com.au/
They probably have a few prize homes in different localities in numerous states several times a year, lets say 2 prize homes in 5 states twice a year, that's 20 separate lotteries every year.
A million dollar home selling 2 million in tickets that's 20 million a year minus the administration costs to a tax-free charity.
And because people leave their contact details when purchasing a ticket, the charity continues having more and more people in their contact list to inform about new and upcoming prize homes.
If professional charitable infrastructure hasn't been set up to benefit scoliosis patients, the question is why not?

You talk about researchers concentrating on keeping people off operating tables; out of braces; out of the clutches of chiropractors and of finding effective non-surgical and non-brace treatments for people who need treatment.
But I have to ask how they realistically hope to go about achieving any of these goals without an understanding of biomechanics if a problem does indeed exist there.

Sometimes I feel like I woke up in some kind of alternate reality, some kind of upside-down world where logic is discarded.
Think about it from my point of view, this all started in October 98.
By the time the new millennium came, I already had a good handle on what was going on biomechanically, though my ability to explain it was terrible.

So I'm witness to this whole universe of untapped knowledge and I'm trying to get everyone's attention saying 'I understand exactly how my scoliosis works' and they're like 'We're too busy trying to unlock the mysteries of idiopathic scoliosis'...
Then I contact the SRS and lay it all out for them, and they're official response is "You're right, but your wrong." and can't explain any technical reasons for their decision...
And then I build professional quality scoliosis websites beneficial to patients and I'm chastised and treated with contempt for it by my peers in the community I belong to...

In what context is any of this reasonable or normal?
I'm really living in an upside-down world, its truly absurd.

I'm sorry if I'm coming across blunt today.
I'd written this big response to the discussion of websites yesterday so I could finally move on to the scoliosis traction chair topic and be up to date on the thread and I checked my own scoliosis websites just before I was about to post and found out that I've had some serious issues with my hosting account and domains. I'm not going to add that comment right now I prepared yesterday or go into the details of whats happened but I may do so later.

So I'm feeling like every good thing I tried to do with scoliosis has been a complete and utter failure and that every time I stick my neck out to stand up for what I believe in and know to be right I just get knocked back down and everything is pointless.
Whats more, when it comes to scoliosis related issues I don't generally get upset, I get mad.

Pooka1
01-15-2016, 05:58 PM
You talk about researchers concentrating on keeping people off operating tables; out of braces; out of the clutches of chiropractors and of finding effective non-surgical and non-brace treatments for people who need treatment.
But I have to ask how they realistically hope to go about achieving any of these goals without an understanding of biomechanics if a problem does indeed exist there.

Scott do you remember I posted many abstracts to articles on biomechanics? Did you read these articles? Maybe one, several, or most of them are saying what you are saying. Why do you think these researchers don't understand biomechanics? I don't think any of those guys are unrealistic.


By the time the new millennium came, I already had a good handle on what was going on biomechanically, though my ability to explain it was terrible.

Scott if you can't find a way to explain it rigorously and clearly, nobody should be expected to take it on faith that you have solved it. This is science and it is not enough to understand. If you want others to believe you understand you have to explain it in published, peer-reviewed articles. How will they know what you did if you don't write it down clearly for them to consider?

sjmcphee
01-16-2016, 06:41 PM
Yes I remember you did, and I did browse them over, though I don't think I found anything all that useful in those particular papers.
I haven't forgotten that you did try to help though, and I'm thankful.
Some of them if I recall are of some use, and provide some small leads... for example I think someone hypothesized about lordosis in kyphosis;
And some are just good for gaining a better understanding even though they don't provide any actual value to me;
I get the general feeling that even though they did a whole lot of the important legwork learning many things, they're looking at the problem at a far lower level of complexity than that I which prescribe to my understanding of the problem, and also I feel like I'm not going to find any answers amongst other peoples failures.


Scott if you can't find a way to explain it rigorously and clearly, nobody should be expected to take it on faith that you have solved it. This is science and it is not enough to understand. If you want others to believe you understand you have to explain it in published, peer-reviewed articles. How will they know what you did if you don't write it down clearly for them to consider?

I understand where you're coming from, honestly I do, but there's some points that you should keep in mind.
(And I don't want you to think I'm being argumentative, I want you to understand.)

Point 1
I'm the witness, not the investigator. Just because someone witnesses a crime does not mean they want to spend their life as a detective.
Also, I'm the patient not the researcher. It was never my job to go spend years at university and study getting into mega-debt just for the right to say "You need to take a look at this".
Even if I did these things, they'd still have other experts recreate and verify it, so why bother going about it the hard way?
Why not just get the experts to try to make proper sense now instead of later?

Point 2
You're not appreciating the level of complexity I'm suggesting.
I'm talking about millions of small minor adjustments occurring within the spinal column.
Lets say you were in my shoes.
Scene 1: The injury that created the instability.
Scene 2: How that instability works as a dynamic process in relation to scoliosis progression.
How do I even begin to explain these things? Realistically?
I had to create my own terminology to explain what I saw going on just so I could remember it.
I don't think I can explain it without the use of modern 3d modelling technology, so then I'm expected to also be proficient in advanced 3D modelling.
Is it not enough that I was able to understand what is occurring and to concentrate on that that they instead demand I become proficient in all other areas too?

Point 3
Me - Publish in peer reviewed articles?
You're line of rational thinking suddenly assumes I'm the investigator, (and a university researcher) not the witness (a patient).
I'm not a researcher, I don't have easy access to biomechanical labs, 3D Software, 3D models, libraries of information, colleagues in the field.
Where's my support mechanisms?
Do I see administrative staff of patient organizations such as this one working to help me achieve anything I set out to do?
I couldn't even get a response from emails to NSF if I recall.

How do you expect me to achieve any of this?
Don't you understand I cant be expected to achieve these things on my own without help or support whatsoever.
I witnessed and understood exactly how my scoliosis works and that was a big enough achievement but I cannot perform miracles.
Don't forget that I'm not even sure if this knowledge even applies to anyone else, as I can only speak for myself and speculate.

Why do you honestly think I started building my little scoliosis website empire?
Cleaning up the net from all the shonks was a worthy cause, and I thought it would be easier to influence the researchers or alternatively use some fundraising to pay for it to be done.
This was a far better and easier plan than attempting to write a document that proves nothing, that nobody will pay any attention to, and do nothing about.

You need to understand there are barriers that prevent me from going down the conventional path you suggested and that if I could've done so that way I would've done it already.
You should've instead asked what I believe I'd need to succeed, because then you might be able to correlate what I need with what I do not have and understand why I can't easily go down that path.
All the knowledge needed to 'prove' this can only come from within a sophisticated scoliosis model, and I don't have that data, I have to get it from within the model itself.
What I have is the knowledge of how my scoliosis biomechanics works, and therefore knowledge of how to get the data.

I've decided I'm going to post the story I wrote about my scoliosis website efforts and name those websites I built and the ones I didn't, as this is a part of my efforts and journey.
I cant be sure that Linda won't delete my entire post as she has done before, so I'm going to firstly take down the scoliosis websites permanently so that she has no reason to complain.

Pooka1
01-16-2016, 10:00 PM
Scott it seems like there are too many obstacles in the way of you working with the researchers. If it just frustrates you, perhaps it is best to move on considering there is no clear path between what you are doing and coming up with a treatment. You can try PT for pain and hopefully never need surgery. The people faced with surgery or bracing are on the wrong side of the firing line and need help yesterday. I think the researchers are probably focusing on those people first.

sjmcphee
01-17-2016, 02:07 PM
I'd like to explain more definitively what I mean when I say 'I know how my scoliosis works'.
Then I will explain the reasons why its pointless for me to try to go down the conventional path of trying to write a credible research document.
And then I will explain to you how there is a link between what I was trying to do and treatments.

Let me be clear about what I mean when I say 'I know how my scoliosis works'.

My scoliosis is one that during the ages 0 to 25 I had developed a 1cm LLD and an related 11 or 12 degree spinal curvature.
At age 25 I injured my spine in a manner that changed the previously normal functioning operation of my spinal column into an altered state.
This 'altered biomechanics' was one in which an initial structural change created an element of lordosis inside kyphosis; 'instability' within the spinal column; and that the instability worked as a cycle of bad structural loading that encompasses the biomechanics of my entire spinal column and systematically causes my scoliosis to progress, by purely mechanical means.
Its a cycle of a seemingly infinite number of small almost undetectable mechanical adjustments occurring within the spine that systematically cause the spinal column to slowly curve and buckle.
Although a structural change has occurred within the spinal column, there is no change to range of motion and the normal function of these mechanisms.
The structural change that created this 'instability' was enabled (in part) by the spines natural movements (flexion / extension, lateral flexion and rotation of the trunk).
It may be fair to say that the spines natural movements were used in such a manner that caused stress upon and worked against the spines natural curves in order to cause the initial structural change, and transfer a lorditic element into thoracic kyphosis.

I understand the exact movement and forces I placed upon the spinal column and muscles in order to create this initial intervertebral change within the structure of my spinal column.
This means that I understand the fundamentals behind what is required to recreate this structural change in a sufficiently accurate fully functional 3D model.
Understanding the exact physical characteristics of this structural change is a somewhat complicated process however, and needs to be determined through modelling.
It has to do with the rib facets, hence the reason I said 'excellent description' the other day regarding the statement that the 'ribcage acts as an anchor'.
Determining the precise configuration is aided in part by the 'true anterior/posterior loading vectors' which are an understanding the geometrical characteristics of the loading of the entire spinal column which we're learned later and are 'keys' to determining the level of axial rotation and loading at each vertebral level across the entire spinal column, at any given time.

From a patients point of view, what I felt was a small structural deviation that was locked in a strange skewiff position between T3 and T6.
Even though it was locked up in this strange skewiff position I could tell that it was unstable as it seemed to be changing and that the deviation was becoming more exaggerated.
I began to see that it was becoming a small concave and convex; and from the point of view of 'instability following a system within the spinal column', a concave on top of a convex systematically changing to become a convex on top of a concave and back again.
I tried to exert all kinds of ranges of motion and distorted movements upon my spine in order to try to fix this structural deviation and I observed some characteristics about the problem.
When I placed forces on my spine that worked to try to straighten the concave, it increased the pronunciation of the convex, and conversely, when I placed forces on my spine that worked to try to straighten the convex it increased the pronunciation of the concave.
It felt as though the concave or convex on the upper side of this structural deviation (in either configuration) controlled loading in the lower half of my spinal column whilst the concave or convex in the lower site of this structural deviation controlled loading in the upper half of my spinal column.

So, after observing the concave on top of a convex systematically changing it was beyond any doubt that I had created a structural problem within my spinal column that was systematically getting worse.

As I've alluded to previously, I was also able to understand how this 'system of instability' worked, as I was able to make sense of the method to which the series of structural changes that followed occurred.
Its not humanly possible to remember the precise state of my entire spinal column at any given time during this process of instability that's occurred over the last 17years, though I was able to understand it at the time that it occurred and I did so for many years, however there was no way to keep a record of it.
(Just trying to remember the level of axial rotation on a significant amount of vertebrae at any given time is quite a difficult human task.)
There are ways in which to calculate this data though, of millions of small structural adjustments, there are shortcuts, tricks if you will.
The level of complexity is extremely mind-boggling, its not really for humans to comprehend, and it's not something that can be easily explained in english.
Its something that needs to be demonstrated within the context of a significantly accurate full functioning spine model.
As I said previously, the original structural change was enabled (in part) by the spines natural movements. (other factors such as the existing spinal curvature may have contributed)
In the same way, the system of instability that occurs as a result of this initial structural change is also enabled by the spines natural movements.
There's a correlation between natural movements of the spine in this process in the way it translates to vertebral loading.
(flexion / extension = compression / tension; lateral flexion = shearing force translation (adjustment); rotation of the trunk = axial rotation)

I have genuine reasons to believe I can transfer this knowledge of 'altered biomechanics' to other curve patterns, though I'm not certain or convinced it even applies to other kinds of scoliosis.
I've never physically evaluated other patients scolioses in which I could make any kind of determination.
I don't know for sure if other patients have 'altered biomechanics' and if they do when it occurs in degrees curvature, and this knowledge would confirm or disprove some hypotheses I have about AIS.
I am lead to believe that a growing spine under these altered biomechanical conditions may cause a scoliosis to increase in magnitude more rapidly.

Let me explain why its pointless for me to try to go down the conventional path of trying to write a credible research document.
I don't have any of this data that would prove what I'm suggesting, I only have the knowledge of it, so technically I'm unable to write any document (including accompanying 3D models) that would prove anything.
The method for which I would get that data is one in which I would generate it from within the model itself.

So unless someone takes it on faith that I can do what I'm suggesting and provides me with the resources that are required, I cannot prove anything I'm suggesting.

Link between my research and treatments:

What you need to consider is that every advancement that has occurred in the history of scoliosis treatments is based on trial and error.
My research (if it applies to other types of scoliosis) brings an opportunity to bring real understanding in every area of diagnosis and treatment.
Diagnosis techniques would be based on 3D imaging that included a complete biomechanical assessment of the curve pattern.
This means that bracing based on the exact requirements needed to effectively reverse the curvature can be developed, instead of from trial and error.
It also means that far more effective methods of surgical intervention could be developed and achieved.
And it also means that we can bring real understanding to alternative treatments methods and hold them to more stringent account.

So yes, I actually DO know exactly how my scoliosis works, and no, I cannot prove it, and just because I can't prove it doesn't mean that I'm not permitted to say it.
And yes, there are reasons why I cannot simply go down the path of writing a credible research document, and why doing so is somewhat pointless, so consider this your document.
And again, yes - there are most certainly clear potential links between my research and treatments, but the research first needs to be completed.

I'd like to explain to you how I WOULD envisage being able to prove that statement "I know how my scoliosis works" if I had the right resources available to me; and apply that knowledge to other patients and treatments but I'm going to have to save that for another day.

And yes, I am trying my best to move on, I'd truly love nothing more than to give this problem to someone else to deal with.
But you know its really hard to push aside the idea that any chance of real help for all of you and your kids might disappear if I do.
Or maybe it's just because I'd really like to prove I'm right about scoliosis, or maybe even prove that everybody else was wrong about me.

Pooka1
01-17-2016, 04:23 PM
Scott, it sounds like you are basing your knowledge on how your back feels. Please consider that the proprioception you are trusting is fooling you. As a long time student of dressage, I can assure you that what you are feeling isn't necessarily what your body is doing. That's why even Olympic riders use mirrors. If they can't trust their sense of feel as to what their own body is doing then please consider someone who hasn't honed their proprioception may not be getting true feed back either.

This may explain why you think certain things about your scoliosis that might differ from what the researchers who are modeling the biomechanics are working on.

Just something to consider or not.

sjmcphee
01-17-2016, 09:39 PM
I'm not mistaken in regards to what I've been a witness to, I even had workers compensation for the injury.
For what I wrote yesterday their are literally millions of smaller pieces of evidence during the last 17years that not only make up my understanding but also continue to confirm it.
There's a whole entire universe of knowledge that I cannot begin to impress upon you I've been a witness to.
During this period I have of course questioned whether or not I'm right, whether I really have witnessed all this or not and its around this point I get angry at myself for even considering it, I know far too much.
I don't really have questions about it, its a perfectly defined system and everything makes sense.
There's no way I'm wrong about my scoliosis though I can only speculate on others.
Second guessing myself or doubting what I've witnessed is like stepping into a world of insanity because I'm 100% certain everything I've said about my scoliosis is true.

Saturday, October the 17th, 1998.
I knew in the first week what was wrong Sharon.
I knew before I was even diagnosed with scoliosis on the 30th.

What you need to understand that no-one else has ever witnessed or understood the true anterior posterior loading vectors.
There's a geometrical basis for all the bad loading that occurs in the curve pattern, (mine anyway) and I've continually witnessed this time and time again during the course of the years whilst x-rays were confirming progression.
It was the reason I could make sense of the entire loading of the spinal column at a given point in time, otherwise there's probably no way I could've ever done it at all.
Its far too complicated and there are too many things to account for.
I used to test myself, predict what it would do, so I was continually testing and refining my knowledge, then I just got to a point where I knew everything.
I just sat back and watched as it unraveled.

There is also one other explanation.
It's that you and probably everyone else as well with everything you've seen and witnessed in this quest for understanding with scoliosis, is that your mind simply cannot comprehend or entertain the idea that I may in fact be right.
To even consider that I may be right completely goes against your belief systems. You can't fathom it and like me, will not second guess yourself.
(This the ultimate reason why I think nobody including patient organizations would stand up and support me, and also that they valued their reputations more highly and feared losing credibility if they did.)
You've already accepted in your mind that no-ones ever going to make any sense of scoliosis so what you've all developed is a little bit of a loser's mentality.
Not only that you'd have to seriously look at the idea I've known all this for nearly 20 years and then you'd have to question just how much has been lost in that time.
You may think that there aren't any known answers for scoliosis but this does not mean that the answers don't exist, because they most certainly do.

I already have mine.
I have 'Un-Idiopathic' scoliosis... and Idiopathic specialists and researchers... Idiopathic peers and patient organizations...

burdle
01-18-2016, 05:36 AM
Hey Sharon,
If professional charitable infrastructure hasn't been set up to benefit scoliosis patients, the question is why not?




On this point I believe it is because the term 'Scoliosis' is too vague.

A lot of people will have degenerative scoliosis especially as we are all living longer and some have just been told that they have scoliosis but all they have is a slight no-progressive curve with no symptoms at all. This unfortunately clouds the condition of a progressive AIS scoliosis with pain.

If we had a different terminology which excluded those for whom a crocked spine is of no consequence then we might get more attention.

sjmcphee
01-19-2016, 12:40 AM
I want to explain another thing to you all.
For me right, the things I've stated I know are true, or at least from your point of view you must acknowledge that I believe they are.
So when I come here as a patient, and I'm disbelieved or the onus of proof is placed upon me like Sharon always immediately does,
Its like... say a person was a victim of a crime, and then they went to a support group.
And all the other people in the support group called them a liar because there was no proof or because the perpetrator would not confess.
If that person was made to feel like a liar, they wouldn't hang around in that support group very long would they?
This is kind of how it is for me.

But I'm not ignorant, though I can only guess at what you all think..
Some guy comes in here like some 'scoliosis theorist' and says he knows it all..
Sharon's only saying what you're all thinking anyway, "Prove it!" right?
I know if I were if everybody else's shoes that's what I'd be thinking.

I know that often I come across short tempered, stubborn minded, opinionated, sometimes rude, and blunt.
I'm here I say my piece and then I'm gone again; but that's a reflection of the way scoliosis and this situation is for me.
Dealing with this particular topic in my life is not easy for me, and I'm not my normal self when dealing with it.
Its only the topic of scoliosis which turns me inside out and makes me act the way I do.
It's the reason why I also run away from dealing with it all the time.
On other topics or in my normal life when I'm staying away from scoliosis issues, I don't get all wound up and act the way I do when I'm here.
What I'm trying to say is on a different forum... Id probably come across as a lot more normal.

But you all must know by now I'm not unintelligent, and that I do understand the spinal column, spinal biomechanics and things about scoliosis well enough.
I write these long rambling posts not because I want to, because I have to, that's just what its like to be in my shoes.

I'm never going to say I was mistaken about what I've witnessed.
I know I'm right about my scoliosis, but honestly, I truly don't have a clue whether or not what happened to me applies to AIS.
I don't know where my 'knowledge' fits into the whole big picture.

PRO - I do have a right thoracolumbar curve pattern and this is probably the original reason why I associated my scoliosis with AIS.
Because one of the known things about AIS is that it comes in defined curve patterns.
CON - No-one else has described any kind of initiating structural incident that set forth a system of bad structural loading like what I'm saying about my scoliosis.
So I'm not convinced that what happened to me also happens in AIS, I'm not.
PRO - A whole industry of chiropractors believe that there is a structural problem with scoliosis don't they?
Why else would they apply de-rotation techniques and perform spinal adjustments?
CON - I knew from day one that my spinal columns biomechanics had been impaired and that the scoliosis would continue to progress.
And this doesn't happen with AIS patients always either, a lot of them come good, don't they?
PRO - Researchers have hypothesized lordosis in kyphosis, I know this is true, because I witnessed it.
CON - A spinal surgeon told me when I asked about 'altered biomechanics' that AIS patients may not have the "out of balance" component until around 40 degrees, where as adult scoliosis patients occur around 10 degrees.
But he said my questions were ahead of the literature and I also have to say I'm not sure he completely understood what I meant.
I do know that I was never diagnosed with any kind of 'altered biomechanics' by any specialist so I'm not sure they are aware of what I'm referring to.
...So I really don't know.

And do you guys really want to take the chance that I really did know something important and the knowledge was overlooked because I wasn't given due diligence because I was a patient?
And don't I deserve answers too? They don't even have a valid scoliosis category I fit into.

I tend to think in a mindset of "How to cure my scoliosis" rather than "How to prove what I know about scoliosis".
So I think about all the enormously technical things I would have to take into account to ACTUALLY do it and I think that way.
"This is what needs to be done, why aren't you doing it? and why isn't anyone listening to me?? ...Dammit"

But sometimes I can't see the trees for the leaves.
Probably the most realistically important aspect I should be thinking about which is really whats ultimately important to everyone else is "Whether what I know applies to other patients and whether I can show any evidence of this 'altered biomechanics' in those patients."

I need to do a physical examination of other scoliosis patients myself to see if there's any evidence of the 'altered biomechanics' I'm saying applies to my scoliosis.
Or even photos or videos, I REALLY need to have a good look at them for myself.
If what I'm saying (which is well known to me) exists in other patients then I should have no trouble finding evidence of it that I can show to others.
Certainly in a physical examination I'd be able to tell if the 'altered biomechanics' is there.
If I cant find it, its because it isn't there.

That way I won't need to prove everything I know about my scoliosis if I cant find evidence of it occurring in others.
You wont get to prove me wrong about my scoliosis, but I'll know for sure whether or not it applies to you or not.

CRITERIA: Right Thoracolumbar curve patterns preferably less than 20 degrees that have not undergone surgery, that's what I need to see.

sjmcphee
01-19-2016, 09:39 PM
Hey Burdle,
Your comment was to Sharon but the comment you were responding to was from me, though I would like to hear Sharons opinion.
I've got plenty to say about the current state of scoliosis on the internet, and fundraising, and I was going to respond to your earlier comment, I just hadnt gotten that far.
I was waiting to sort some things out with my hosting company before I addressed that topic.

For the sake of professional charitable infrastructure, I don't think it really matters if other types of scoliosis are included or not.
In some ways having all the types of scoliosis blanketed together may even be more helpful, because a lot more people will relate to the charity and support it.
That isn't to say that individual groups in different kinds of scoliosis can't have their own 'individualised' funraising ventures either, like for example:

I'd suggest something like a main scoliosis charity, with professional fundraising activities, but within that charity you have smaller sub-groups who manage charitable events during the year for different kinds of scoliosis.

Take a look at these websites.
Take a good look at what you could have.
http://demo.rockettheme.com/joomla-templates
I can install these websites complete in about an hour and that's the time it takes to upload the site using ftp.
It actually takes me about 5 minutes of actual work to do it.
When I had developer membership there I could've given you the template and installed the site for you FOR FREE.
Most of the work is done all you have to do is upload a logo, set up menus, and use the pages already created to swap out content.
They even have matching forums for the websites and you can combine the site and forum logins so the one login works for both.
http://demo.rockettheme.com/phpbb-styles
You can link from articles directly to the forums and easily add video and content.

You can use third party design companies to make all your logos flyers and promotional material.
http://www.designcrowd.com.au/

This guy even owes me $1000 worth of specifically designed 3d images for scoliosis and I can have hundreds of other images from him to use.
http://www.sciepro.com/

You could take charge of your own existence on the net and change everything if you all wanted.

You could have crowdfunding campaigns to pay for all this anytime you got off your backsides and did it.

So that's why I say its incompetence.
A simple failure of leadership and vision.
A lack of organisation.
I don't want to come across as being disrespectful to the very people that HAVE been given their time and made efforts for scoliosis, but I'm not going to play the issue down for their sake.
There is a huge difference between what is being done, and what should be done and this isn't the first time I've said it.

Though the forum here has been maintained (and I know this is a huge effort on behalf of the people who do it) this site itself hasn't been upgraded since facebook was invented, and scoliosis.org is like the best domain there is.
What are you all doing?

Really when I think about it, if National Scoliosis Foundation isn't willing to do these things, and take scoliosis on the internet seriously, then it should give up the domain name scoliosis.org and give it to someone that will because it needs to be done.

sjmcphee
01-20-2016, 08:38 AM
This is what I want to see.
Notice the relationship between vertebrae and back muscles is ABNORMAL (http://scoliosistv.com/images/scoliosis.JPG)
I want to know if patients with AIS demonstrate the same structural problem as my scoliosis does.
(Please note: In a normal standing photo you won't see the structural problem as defined)

Also here's my original x-ray report after I was diagnosed.
Xray Report October 98 (http://scoliosistv.com/images/report.jpg)

sjmcphee
01-21-2016, 12:56 AM
If you really want to create a comprehensive patient education products you'll need a lot more than $20,000. That amount is barely enough to just plan out all the contents you wrote about, let alone actually create the assets.

Even if you succeed in developing assets, that is no guarantee any organization will use any of it. Generally, legal issues (Especially in the U.S.) will probably prevent supporting/using content that was not created by them or cannot be properly referenced according to the organization's guidelines. Each organization has their own set of rules and guidelines on how content can be created and sourced/referenced.

So you can continue to develop educational material but I don't know if any organization will back you or use that content. Is it your goal to just share what you know or have an organization use your content?

If you really want to do this, I'd guess your best bet is to develop your brand through social media and develop a following, not just blindly create content expecting people to find it.

Hello green m&m,
I did actually plan out a lot of the contents which needed to be done already years ago, but creating all the articles itself is a whole different matter.
As a person with some web design experience its the task of building it that appeals to me, not necessarily owning or running it.

So I thought I'd share my list of topics for a scoliosis website, if they may be of use to the people who administer this site.
Its by no means a complete list, (maybe others can add to it) and I'm not actually sure that I ever settled upon what was the best was to display or link all this info together, with videos, animated presentations and links to forums for discussion.
For example you might have a topic "Bullying" and link to a forum thread where parents discuss their kids being bullied,
And this is true for many of the articles, so there's a lot of ways you can link all the info together.

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sjmcphee
01-21-2016, 01:53 AM
The idea of creating and designing a 'dream' scoliosis website like this is almost like creating a work of art.
Putting everything that has to do with scoliosis in its correct place is quite a challenge.

I'm giving some thought to building a fully functional test version of this site with fake text (Lorem Ipsum).
I truly think its time that something was done about the quality of scoliosis websites on the internet.
Do you all realise we only make things worse for ourselves leaving things this way?

Our health condition needs a facelift on the internet, and we need to better take care of our own if we are to find a way to make use of professional fundraising ventures.
If we have any plans at all to make things better for ourselves, then this HAS to be done.

rohrer01
01-25-2016, 12:48 PM
This is what I want to see.
Notice the relationship between vertebrae and back muscles is ABNORMAL (http://scoliosistv.com/images/scoliosis.JPG)
I want to know if patients with AIS demonstrate the same structural problem as my scoliosis does.
(Please note: In a normal standing photo you won't see the structural problem as defined)

Also here's my original x-ray report after I was diagnosed.
Xray Report October 98 (http://scoliosistv.com/images/report.jpg)

Scott,
12o is NOT moderate scoliosis. It's BARELY scoliosis measured by chiropractors, not a radiologist. Your curve has to be 10 degrees to even be considered scoliosis. So your case would be EXTREMELY MILD if you do indeed have scoliosis at all. I believe the margin of error for scoliosis is +/-5o. So you may not have scoliosis at all. I can stand and easily bend myself to have more than a 12o curve. I hope you have been seen by a real doctor and have had a follow-up x-ray read by a radiologist. It would be interesting what it says. It sounds like this chiro was scaring you into coming back for treatments that, in my own opinion, could cause scoliosis.

I'm by no means putting you down, so don't take it that way. I felt it when my lower curve started to move. My clothing felt different and I noticed a difference in my gait.

Pooka1
01-25-2016, 01:04 PM
Scott,
12o is NOT moderate scoliosis. It's BARELY scoliosis measured by chiropractors, not a radiologist.

Rohrer, good catch.

I think there is a very good chance Scott doesn't have scoliosis AT ALL. Hopefully the chiro hasn't screwed Scott's mind beyond recovery.

Oh. my. gosh.

Scott, free your mind and the rest will follow..

Pooka1
01-25-2016, 01:14 PM
It would be very sad if Scott was obsessing about a non-existent condition for years just because he went to a chiro and not an actual doctor.

Chiros should NOT be allowed to use the "Dr." title. The UK cracks down on this for a reason.

sjmcphee
01-25-2016, 02:26 PM
Scott,
12o is NOT moderate scoliosis. It's BARELY scoliosis measured by chiropractors, not a radiologist. Your curve has to be 10 degrees to even be considered scoliosis. So your case would be EXTREMELY MILD if you do indeed have scoliosis at all. I believe the margin of error for scoliosis is +/-5o. So you may not have scoliosis at all. I can stand and easily bend myself to have more than a 12o curve. I hope you have been seen by a real doctor and have had a follow-up x-ray read by a radiologist. It would be interesting what it says. It sounds like this chiro was scaring you into coming back for treatments that, in my own opinion, could cause scoliosis.

I'm by no means putting you down, so don't take it that way. I felt it when my lower curve started to move. My clothing felt different and I noticed a difference in my gait.

Hey Rohrer,
I didn't take any offense (not from your comments anyway) and plus you're on my list of nice people, so I hope you're doing alright.

That was the report from my first back X-ray, I've had plenty over the years since then, slowly and steadily increasing.
I even had my own full-size X-Ray light at one point that I bought second hand off eBay, so I could photograph them (before they went digital)
I'm fairly certain I'm in my 20's now, but I cant exactly remember and I'm as curious as you all are to find out.
I want to guess and say 24 degrees, but I'm scared that I might be being generous.
I have a long term doctor I've been going to for well over 10 years, though he wasn't my doctor until a couple of years after I was diagnosed.

The reason I added that report was more for the timeframe, if you look at the dates you'll see that I did go and see a chiropractor in the weeks following my work injury.
It was the first time I ever went to a chiropractor too and the reason I did was because 'I'd put my back out at work'.
I did get a weeks workers compensation but unfortunately I cant easily show you guys any record of it.

And yes I know you guys are probably looking at my photo with spine envy and wondering what the hell I'm making all the fuss about. I'm sorry.
But somethings different with my scoliosis compared to others biomechanically I think, but I'm not sure.
I did have another look at google images for 'scoliosis photos' the other day, and mine does look a little different, just how I said earlier in this thread.
The scoliosis patients shown do look more like their spinal column is bent but not broken, where mine looks more broken, but not so bent.
I almost wish you guys could know me outside of the group a little, I'm not the crazy person I act like on here... (Well maybe a little, but a different kind of crazy)
I'm not the type of person who will open their mouth and say something unless I know I'm right, and I don't take bets that I'm not likely to win.
I've got an IQ of 127, no genius, but not unintelligent.

I never really got taken in by the chiropractors, I quickly realised they couldn't fix the structural problem that had been created.
But I did go maybe half a dozen times in the early days after I was diagnosed.
My mum paid for a few different treatments here and there and was trying to help.
And I didn't mind the adjustments too much, it felt like it loosened me up a little.
But ultimately I knew they were just taking the money and it wasn't going to amount to anything long term.

I have started to feel a slight change in my gait over the last 6mths to a year, though when I say slight, I mean its probably not even noticeable to anyone else but me.

Been up all night playing around with my practice scoliosis website trying to figure out how best to organise everything...
Time for bed...

rohrer01
01-25-2016, 03:23 PM
Sharon, it would be really sad because this upsets him so much. It would be GREAT news for Scott, though, if he doesn't have scoliosis.
They do follow-up x-rays for a reason. It would catch it if he were just not standing straight. Sometimes even a muscle spasm can make it look that way.

My grandson had a follow up x-ray for foreign body ingestion. They were following it to make sure it passed. His first and second set showed what looked like a developing scoliosis. The last one, my daughter said the doctor told her his spine was straight. He still needs to be watched, especially with his anterior rib hump.

My scoliosis was "discovered" by a chiropractor because they are cheap. My scoliosis was really obvious, though. This chiro was honest and didn't claim he could fix me. He referred my mom to PCH (Phoenix Children's Hospital in AZ). Then she DID take me to real doctors at PCH, a four hour drive one way!

Scott, I would really recommend that you get in to see a scoliosis doctor or at least an orthopedic doctor and get new x-rays ASAP and see what they say. If it turns out that you don't have scoliosis or still have a very mild scoliosis, your ideas still may have helped someone even if it were only to encourage them to investigate and ask questions. What I'm saying is you haven't wasted your time on us. But, you may have worried excessively about your own to your own detriment. You've had a LOT of stress and anxiety over this. It may turn out that you have another condition that is causing your symptoms that has gone undiagnosed because you assumed it was scoliosis. It's more common than not for scoliosis NOT to hurt. I would be saddened if it were something that were treatable and you've suffered all these years. :-(

rohrer01
01-25-2016, 03:54 PM
Scott,
I just now looked at your photograph. You look tight along the spine on the right side for sure. However, you aren't bending over straight, either. It's really hard to tell when you aren't standing symmetrically and leaning to one side with your right arm forward and your left arm down. If you had someone take a photo with you leaning forward while dangling both arms down, we could see if you have a rib hump. I think your back looks the way you describe because of what you are demonstrating with that box. I can't see a rib hump in THIS photograph, not saying you don't have one. If you do, it isn't huge, though.

Are you sure you didn't crack a vertebra with your accident? That would cause muscle spasms for sure. I see that your photo and your report are several years apart as well. How are you guessing your degree of curvature? Has anyone (meaning a radiologist) measured your curve? You need to get that done ASAP so you can get some peace of mind! Even if your curve is in the 20's, it's still considered mild. Chronic muscle spasms will definitely make you stand crooked making it look as though you have scoliosis.

I'm a little worried for you that you have some other process going on other than scoliosis that is being overlooked. It seems that once you get that diagnosis, everything else gets shoved into that scoli box by you (us) as the patient and by the doctors. That's why they missed my disease for so many years. Everything was shoved into the scoli box. No pun intended. I believe that your injury was real and that you strained or sprained your back. If that is the size of the boxes you were working with, it wouldn't take much. It's an awkward motion to do repetitively. Did it cause scoliosis? Maybe, if you've been in a state of spasm all these years. It seems unlikely that the spasms would last that long unless you have an underlying condition. I wish you the best and hope you figure this out. Please, don't try to guess your own curve...especially by looking at external photos.

Sleep well,
Rohrer01

Pooka1
01-25-2016, 04:32 PM
That was the report from my first back X-ray, I've had plenty over the years since then, slowly and steadily increasing.

When was the last one and, was it done by a doctor or a chiro, and what was the measurement? If done by a chiro, could you post the radiograph and not the report?


But somethings different with my scoliosis compared to others biomechanically I think, but I'm not sure.

Maybe yours is functional and not structural? It was discovered as an incidental finding for a soft tissue injury to your shoulder, yes? It was probably there for a long time unbeknownst to you, and is not connected to your shoulder injury.

rohrer01
01-25-2016, 05:05 PM
Scott,
I just read through several of your very lengthy posts. Do you have any sort of education in anatomy and physiology or higher math?

I do.

What Sharon said about proprioception may be true in your case whether you want to believe it or not. If you have a LLD, that could be the trigger right there. That in and of itself can make you "feel" things differently. I will admit that I've "felt" what you are describing and years later the x-rays confirmed what I was feeling at a very small level at the time. So I don't doubt you there.

Where I do doubt you is that you have this great insight on the biomechanics of loading and unloading and a vector system. We talked privately about this vector system and I'm not sure that you quite have a real handle on what a vector is as the vectors inside the human body change with every movement you make, scoliotic or not. A vector is a particular direction with a particular force, or in some cases angles. Mountains can be drawn out with vector maps. Dynamic objects, such as humans, are not static, so using a static vector model will not work.

You contradict yourself a LOT by using terms such as lordosis within kyphosis. When that happens, you get hypokyphosis - a condition that I'm all too aware of as my internal organs are largely displaced because of it. Eventually, you will get a lordosis where a kyphosis should be. Lordosis is an inward sloping of the spine in the sagittal plane. Kyphosis is the outward sloping of the spine in the sagittal plane. You either slope in or you slope out. You can't do both at the same time. You can switch by bending backward and then forward, but that is not where the natural kyphosis and lordosis exist. you are supposed to have lordosis in your neck. You are supposed to have kyphosis in your upper thoracic spine. You are supposed to have lordosis in you lower lumbar spine. So to say you have one within another is a contradiction.

Also, the facet joints are where each vertebra sits on the one above and/or below it.

I'm sorry, because you view me as a nice person and I really, really try to be. But your vast knowledge of contradictions and throwing around big words is driving me crazy. If you really know your stuff like you say you do, please put it into laymen's terms for everyone to understand. If you can't do that, then you will be proving that you don't really understand what you think you do.

Yes, most of us can feel these forces taking place in our spines. The reason that the researchers won't listen to you is clearly what I just stated to you. I'm sorry if I burst your bubble. They are able to make 3D models of actual spines and bend and twist these models to see how they move, load, and unload. They have a 3D x-ray machine in San Diego, CA that does just that. They probably have one at the NIH in MD, too. They reserve these machines for kids. It would be great if they could use them for everyone. Bracing could be improved, surgeries could be improved, etc.. We would all get our own unique fix. It's not that you're ahead of the research like that doctor said (I'm sorry, but I believe he was giving you a pat answer), it's that $$$ prevent the research to utilize the technologies already available. So they have to develop "generic", so to speak, techniques that will fit the majority. They have many different types of rods, VBS, tethering, a googleplex of braces made individually for each kid, some not so individual. If they had access to 3D models for every x-ray screening, they could accurately see what is happening at each vertebral level for each person. It's just not feasible.

Sorry, I just couldn't take it anymore. Put it in laymen's terms and prove me wrong, please...
Rohrer01

Pooka1
01-25-2016, 05:48 PM
Maybe Scott can discuss this paper in light of his work.

http://scoliosisjournal.biomedcentral.com/articles/10.1186/1748-7161-6-11

From the discussion...


This study is the first to explore the influence of different vertebral growth patterns on AIS progression using state-of-the-art biomechanical modeling techniques.

Pooka1
01-25-2016, 06:05 PM
Here's another that seems similar to what Scott is working on... maybe he can comment...

http://scoliosisjournal.biomedcentral.com/articles/10.1186/1748-7161-2-16

Pooka1
01-25-2016, 06:13 PM
Here is a very long file with extensive Q&A.

http://scoliosisjournal.biomedcentral.com/articles/10.1186/1748-7161-1-16

Here is a list of topics that people consider that Scott could discuss within his work:

The research engenders controversy, including:
1.
Are the results applicable to humans who lack ossified vertebral body epiphyses and have "ring" apophyses?

2.
Are there separate initiating (? discal, vertebral, costal or neuromuscular) and progressive (mechanical and non-mechanical) factors for AIS pathogenesis?

3.
Are vertebral endplate physes normal when the growth modulation starts?

4.
Whether healthy adolescents can spontaneously generate asymmetrical vertebral growth and deformity by inappropriate neuromuscular activation strategies.

5.
Do the findings have relevance to treatment? Or, is the resurrection of exercise programs for AIS a step too far?

6.
Why does asymmetric loading on the spine from pelvic tilt scoliosis not lead to curve progression?

7.
Does movement asymmetry of both hips during gait cause idiopathic scoliosis?

8.
Why do normal sagittal spinal curves not progress from front-back asymmetric vertebral loading?

9.
Might not patients with severe curves have, in addition to the hypokyphosis, a slightly postero-lateral asymmetric load on endplate physes?

10.
Do neurogenic thoracic scolioses result from different skeletal pathomechanisms than those that evoke thoracic AIS?

11.
In some conditions why does curve progression occur without evidence to suggest that the cause is asymmetric loading?

12.
Do the relative anterior spinal overgrowth (RASO) and other biologic concepts of structural scoliosis contribute to curve progression?

13.
Does the vertebral body wedging in progressive lumbar AIS result from:
a)
secondary neuromuscular dysfunction [this paper],

b)
primary neuromuscular imbalance [12, 19, 22, 53, 54],

c)
relative anterior spinal overgrowth (RASO) due to -
i.
primary skeletal change [12, 55, 56] with uncoupled endochondral-membranous bone formation [55, 56], or

ii.
uncoupled neuro-osseous growth between the anterior spinal column and spinal cord [57–60],


d)
calcification of cartilage endplates [61, 62],

e)
resorption by osteoclasts [63], or

f)
osteopenia [64–67], possibly due to maturational abnormalities in cell differentiation – recently suggested by studying calcium channel isoforms in the membranes of platelets and osteoblasts from patients with AIS [68].


14.
Do methods and findings from recent research on mechanotransduction in articular cartilage have relevance to the vertebral growth plate chondrocytic phenotype?

15.
Is the adjective "vicious" appropriate for Dr Stokes' biomechanical hypothesis of pathogenesis?

Pooka1
01-25-2016, 06:38 PM
If you have a LLD, that could be the trigger right there.

I think this might cause a small functional scoliosis that might be what Scott has. I bet he could completely bend out the curve which would define it as functional and NOT structural as far as I know. I think the biomechanics of a LLD causing a small functional scoliosis has probably been worked out. It seems way more easy to model than all the growth-related minutia involved in a structural scoliosis.


Dynamic objects, such as humans, are not static, so using a static vector model will not work.

Yes. Maybe that is why these researchers tend to deal with moments as opposed ot just vectors. I hope Ti Ed will correct me if I am wrong about this... I don't deal with this kind of stuff in my work.

sjmcphee
01-25-2016, 10:16 PM
Morning everyone...
Thanks Sharon and Rohrer for all your comments, I have a bit to go through in your posts and think about / respond to.
I do value both your input on scoliosis matters.
I'll have to dig up more xray's and reports and photos etc to show you and have a good think about all you've both mentioned.
I'm fairly sure that Ian Stokes has retired now, and that his paper regarding the 'vicious cycle' is essentially different to what I was putting forward.
I have emailed and spoken with him several times in the past.

But this was when I was saying that what happened to me is relevant to understanding AIS, and I've backed away from making this statement / assumption now as I really don't know.

I'm kind of in web-design mode atm.. and cant seem to concentrate on technical scoliosis stuff, maybe its because I haven't been awake very long.
I do want to respond to a lot of the scoliosis things you both mentioned.

I hope I don't get in trouble for this, I just took the website I've been playing with out of maintenance (offline) mode, becoz I want you guys to check something.
This isn't the actual website or domain I will be using if I do complete the site, I'm just using this existing site to practice on and create content and test functionality.
I haven't done any web design in a few years, I'm a little rusty and my coding wasn't that great to begin with.
I must've put a forum into this old site years ago to play around with and it needs an awful lot of work to tidy it up.
Also I'm thinking of adding a facebook like component as well.
Theres two I could use, Jomsocial or EasySocial.
http://easysocial.stackideas.com/
http://demo.jomsocial.com/index.php

I think with Jomsocial I can even combine the forum into the Jomsocial community.
I only specifically learned web design to build scoliosis websites.
Just playing around...

...Anyway my question is "What is missing from this list? or/ What is on this list and shouldn't be?"
List of Articles (http://scoliosistv.com/index.php/learning-path)

I'll get back to you on the other stuff once I've had time to think about it properly.
Also, Random question... Do curve patterns exist in Degenerative Scoliosis?

sjmcphee
01-26-2016, 05:09 AM
Scott,
I just read through several of your very lengthy posts. Do you have any sort of education in anatomy and physiology or higher math?


Nope, would you believe I was expelled in Grade 10 for 'Willful and Persistent Disobedience"?
I'd been play fighting with the prettiest girl in school on the verandas of the demountables (semi-mobile modular classrooms) and accidentally broke a glass louvre.
I got a whole term off, bummed around the neighborhood on my skateboard then finished the other two terms at a neighboring school.
Didn't take me too long to get in trouble there either, if I recall it was the rotten-egg gas stink-bomb (little glass capsules) that my friend Matt let off in English class one morning.
Of course I couldn't stop laughing while everyone else was screaming at the smell including the teacher and no knowing what was happening so I got in trouble for it too.
Everyone had to do class outside for the rest of the day it smelled so bad.
I don't think I ever laughed so hard, the cane was worth it, '6 of the best' as they used to say..
So my formal education ended at Grade 10.

I have to be honest and tell you guys I almost had a fit earlier today.
You nearly had to call for someone to send me to the mental institution, really.

I pulled out my xrays, and was going through them.
The first few most recent looking sets of x-rays from around 2011 and 2012 didn't have reports, and I came across this set from 2009.
There was no report in this set either, (I do have a big stack of xrays, maybe about 20 sets) the reports are probably somewhere in a different set of xrays I haven't looked in. (All messed up, I know)
So, this set from 2009, I saw the radiologist had measured the Cobb angle on the films in pencil.
My X-Ray light doesn't work anymore, so I took the film outside into the sun to get a better look...

I almost dropped dead from shock, it said 12 degrees.
Could I have been wrong about everything?
Was it all in my head?
This was second guessing myself in a way I'd never had to before.
Was I going mad?

So I went back inside... feeling rather rattled...
And I went back to the other xrays which were a part of that 2009 set and I saw another film also had pencil Cobb angle measurements...

Anyway.. the long and the short of it is that yours truly here picked up the wrong film and was looking at the measurements for the secondary lumbar curve..
What an idiot...
The primary curve seen on the second film was centred at T9 - T10 and measured 20 degrees.
That was 2009.
So I got 8 degrees increase in 11years, and for me to be correct on the 24 degree assumption I made yesterday, I would need to get a 4 degree increase over those last 6 years since 2009.
My guess is that I'm about perfectly spot on in the assumption I made yesterday.

It wasn't just a guess though, it was an 'educated' guess.
Remember I told you guys about a week or so back that I saw something fundamentally change in the loading of the curve pattern last year that instead of those small concaves on top of a convex (and vice-versa) meeting at the junction of the spines natural curves, that the concaves and convexes now instead went through the junctions instead of meeting at them, and that I assumed that this was the beginning of spinal rotation? (and rib hump)

Well what I didn't specifically say is that the concave on top of a convex (and vice versa) is an 'S'
Where a concave or a convex going through the junction is a 'C'
I knew this is a fundamental change in the loading so basically I took the 12 degree measurement from at the time of the injury and just doubled it.

It sounds like madness, and maybe it is..
Maybe some kind of intuition or hunch, I'm not sure, but I think I'm right on the mark either way.
Truthfully I probably saw those xray measurements years ago when they were taken and just forgot the measurements.

Now for the apologies and the "You were right, I was wrong stuff"
I came across something last night that mentioned vector.
Now I cant remember which one of you kept telling me I was wrong in the past, but I will finally admit that you guys were right and I was wrong.
I saw the word 'force' mentioned as part of a definition of 'vector' I read somewhere last night.
When I say vector, I'm not referring to anything to do with force, so my terminology is most certainly wrong.
And I know that you guys tried to tell me, so I'm sorry and admit my mistake.
The problem is I don't know how else to describe.. what I'm trying to describe.. Lol

What I'm talking about is a specific set of 4 lines that all have separate angle and direction in 3d space to form a set.
4 sets of them, all the same in the curve pattern but arranged differently.
I'm not describing a force, its more like plane's.

Force itself isn't something I've ever tried to allude to or calculate within the loading of the curve pattern.
Think of an engine, I'm not trying to describe the force it takes to turn the crankshaft, but more the mechanics of the pistons going up and down and the rods forcing the valves to open and close as a system.

Anyhow...
What does all this mean?
It means that my progression has occurred faster after the injury than it did prior to it.
And it also means that I still don't fit into any conventional scoliosis category.
These are facts.

All I want is for the researchers understanding of scoliosis to fit the facts of my particular scoliosis, and put me in a category that makes sense.
This isnt a reason to make fun of me btw Sharon.

Here's some more images.
This one is a standing photo taken at the time the other one was taken.
You see, just like I said you can't see anything from those free standing photos.
Standing (http://scoliosistv.com/images/scoliosis2.JPG)
This one is from my last X-Rays on disc, the software is far better than an earlier one I have on disc.
I was impressed, I could even see my teeth, but unimpressed that I couldn't find the report.
XRay Software (http://scoliosistv.com/images/xray-software.png)
And this one is to show Rohrer a better look at the size of that box.
Box (http://scoliosistv.com/images/box.jpg)
The injury happened as my arm passed parallel to my body.
Two crunches, one as my arm passed my body after I'd cut the tape off, and the second when I brought my arm back to its normal position.
But you also got to know I wasn't bending my arm at the elbow. I was placing all the force from this movement into my shoulder and I was in effect kind of using my back like a crane.

I cant believe I kept that box for so long.
It finally ended up dumped on the bonfire down the front paddock about a year or so back.

sjmcphee
01-26-2016, 06:19 AM
Maybe Scott can discuss this paper in light of his work.

http://scoliosisjournal.biomedcentral.com/articles/10.1186/1748-7161-6-11

From the discussion...

From memory, Ian is putting forward his theory of a 'vicious cycle' of growth modulation in the end plates.. or something..
His theory if I'm correct relies on growth as the determining factor for progression of the curvature, and he may be right.

What I put forward is a 'vicious cycle' of bad biomechanical loading, and this may only apply to me, I don't know if it applies to anyone else.
Mine is biomechanical related, his is growth related.

I never really looked too hard at research that didn't apply to me.
I skimmed over it years ago and moved on.
I'd have to go right over that document to answer your questions Sharon, and to what end - none of it applies to me.
Growth has never been a factor in my scoliosis because I was already skeletally mature.

I'M NOT LOOKING FOR ANSWERS, I ALREADY HAVE THEM
I JUST DON'T KNOW WHERE THOSE ANSWERS FIT

I got to be honest with you Sharon and say that I don't exactly get your angle.
From what I see, you make it your job to only support what is proven scientifically and feel the need challenge anything else.
I don't know why you make fun of me as a scoliosis patient, saying I don't even have scoliosis, trying to attack or make fun of me in a mental health context.
Do I go around making fun of your kids? NO, so don't do it to me.
I find it insulting on some level some of the things you said if you don't even have scoliosis and are just a concerned parent.
Then try to drop big research documents on me and ask a hundred questions like you are trying to find a way to make me look like a fool.
Is it because you were arguing with flerc on another thread and now you just decided to come back to stir me up again because you don't have anything better to do?
I don't mind if you have something constructive to add, (like Rohrer mentioned you did about proprioception) actually I genuinely appreciate it, but if you're just trying to find a way to make yourself look smarter by attempting to make me look foolish then I really don't have time for it.
If I'm wrong, then please accept my apology, and also please explain.
But know this is the way I'm taking the way your acting, and its coming across as snidely and petty.
I don't like saying it, but I'm calling it out before it goes any further.

Pooka1
01-26-2016, 07:26 AM
Standing (http://scoliosistv.com/images/scoliosis2.JPG)
This one is from my last X-Rays on disc, the software is far better than an earlier one I have on disc.
I was impressed, I could even see my teeth, but unimpressed that I couldn't find the report.

Scott, can you post the first and third images from that set? I can't enlarge those because it will only show the one sagittal view.

Thanks.

sjmcphee
01-26-2016, 08:13 AM
Yep sure Sharon, and thanks for taking a look.
I really like that inteleviewer software, its easy to use, and also even has a Cobb angle measurement tool.
I had to export the images out of the viewer software and save them on the computer.
Not sure if you prefer the inverted colors or the standard look.
Image 1 (http://scoliosistv.com/images/Xray-Spine1.jpg) and Image 2 (http://scoliosistv.com/images/Xray-Spine2.jpg)

Pooka1
01-26-2016, 08:15 AM
Yep sure Sharon, and thanks for taking a look.
I really like that inteleviewer software, its easy to use, and also even has a Cobb angle measurement tool.
I had to export the images out of the viewer software and save them on the computer.
Not sure if you prefer the inverted colors or the standard look.
Image 1 (http://scoliosistv.com/images/Xray-Spine1.jpg) and Image 2 (http://scoliosistv.com/images/Xray-Spine2.jpg)

Thanks Scott. What measurement did you get using the tool?

That looks like a very complete study.

sjmcphee
01-26-2016, 12:10 PM
Hey Sharon,
I hadn't tried the Cobb Measurement tool at the time I posted my last comment, but you got me curious so I went and had a go at it.
The measurement of the thoracolumbar curve by my calculations was significantly less however than when it had been measured by hand on previous films 3 years before in November 2009.
I'd like to say I measured it wrong, but I don't think I did, in which case I'd like to say the radiologist made a mistake, but I don't think he did either.
I took my measurements from the exact vertebral levels that they (previous radiologist) had used to get their measurements (in pencil) on the films that measured 20 degrees (thoracolumbar) and 12 degrees (lumbar).
I got 16.1 degrees on the thoracolumbar curve and 12.8 degrees on the lumbar curve, on the December 2012 xrays, so now I don't know what to think, except that it makes me look pretty foolish.
X-Rays with Cobb angle measured digitally (http://scoliosistv.com/images/Xray-Spine3.jpg)

That's the first time I ever witnessed the whole +/- 5 degrees thing so blatantly out of whack.
Now I really want to go and get more xrays done, as well as show you that the previous ones measured 20 and 12 just so you both know I'm not lying.
I'm going to go digging for that xray report tomorrow and hopefully I'll be able to post it if I can find it.

Also, I'm going to take both the 2009 films and the 2012 disc and ask the radiologist about the discrepancy, then I'm going to see if he can scan the 2009 films and put them on disc for me as well.

sjmcphee
01-26-2016, 01:56 PM
I can't get to sleep, and am seriously trying to figure out what the hell happened structurally when I injured my spine.
The curve itself has never bothered me in the way the altered biomechanics does, and with that I'm seriously starting to think that I did something different to 'injure' my spine than that which usually occurs in Scoliosis.
I wish Dr. McIntyre was around so I could bounce some questions off him..
Facet Joint dislocation?
Rib head dislocation?
Combination of the two?

What was the first and second crunches I felt?
How did it pinch nerves and make my arm numb and lifeless and useless?

Is it possible to mess up the tilt, slide, tilt mechanism of articular facet joints in some way?
Even just on one side temporarily? By jumping across from tilt to tilt?
What happens potentially if this occurs? Axial rotation?
Superior costal facet, inferior costal facet, transverse costal facet.. what on earth did I do to it?

rohrer01
01-26-2016, 04:45 PM
Scott,
First of all, I don't think anyone thinks you're lying about your measurements.

I often tend to defend Sharon's statements when I believe she's not being malicious. She's tamed down and I haven't seen her malicious with you. I get into trouble with some people when I try to interpret what I "think" she means when people take things the wrong way, in my mind at least. I don't believe she was being malicious at all with you. She found research papers that actually backed up what you were saying, being that you were using the same terminology as the researchers did in their papers. That's not malicious. That's showing you that other people/actual researchers HAVE already looked at things in the manner that you have described them. That's where your lack of understanding of the terminology comes in to play. It's not intended to make fun of you, but to show you that it's been done. People thought that Albert Einstein was an idiot and I'm pretty sure he didn't graduate, either. I'm sure he regretted developing the A-bomb, but that's not what he's remembered for. Sharon was, in my opinion, paying you a great compliment by finding researchers that had written papers on the terminologies that you were using. Being compared to a Ph.D., M.D. researcher as a 10th grade drop-out is no insult. She wasn't making fun of you if you look at it that way. If she's going to insult you, believe me she doesn't hide it one bit. Look at her and Flerc's conversations. She does not hide her dislike of his ideas.

Now in your mind you invisage something else that doesn't fit your former terminology. While the apology is appreciated. It is not necessary. Getting you to understand what it is you are saying and trying to explain is the important thing. No one needs to be right and no one needs to be wrong. There is no satisfaction in that. There IS satisfaction in helping someone narrow down their thoughts, learn to express them correctly, and seeing that a person is learning and benefitting from new knowledge, which you were humble enough to express.

Now I'm going to challenge you on your thought of seeing things in 3D and expressing them in planes. A plane is a 2D model, like a flat piece of glass, a wall, etc. you get the idea. 2D models are "usually" expressed on an (x,y) axis. So you can use formulas to describe shapes, or you can make "sheets" that go on for infinity. 3D models are expressed on an (x,y,z) axis. With this you can make three dimensional shapes, like spheres, pyramids, and even people! Now you can also make intersecting planes in the 3D model. You can make an infinite number of intersecting planes. In medicine, the four planes are the frontal plane (how you can make your side to side measurements - the degree of your Cobb angle), the sagittal plane (this gives you your side view or sagittal measurement), the transverse plane (like the "magic" trick of sawing someone in half as they lay in a box) and finally the oblique plane which takes a diagonal slice. You can most certainly describe these planes by making 2D descriptions for each plane on a 3D axis except the oblique plane. Here is a link to a picture of what I'm describing: http://o.quizlet.com/i/nJguMYh2jxDKklRi1GTNDQ_m.jpg (I hope it works.) In the case you are describing to me using planes, these planes should all intersect at the same spot which is a single point. So I don't quite follow your thinking since every point on your spine, scoliotic or not, will have its own unique set of planes, however many planes you want to use.

My hypothesis:
I honestly don't think you have AIS. If you did, your thoracic curve would have been present during adolescence. It may have been. I don't know and it sounds as if you don't know, either. I honestly think that your 12o lumbar curve came from your LLD. It could have been corrected simply with a shoe lift. After time as we age, our bodies will tend to straighten themselves out. This means you develop another curve to compensate for the original curve. It sounds from your description that the lumbar curve was there first, making it the primary curve. You can have a compensatory curve become structural after time. It happened to me. The only way to find out if either of your curves are really structural is to have bending x-rays to see if you can bend them out. If you can bend them out then they would be, as Sharon called them, functional curves. This doesn't mean that you don't have scoliosis. It does mean that you would be more likely than most of us to respond to physical therapy based treatments. I would start by asking your doctor about orthotics (a shoe lift) to address your LLD. Then PT based therapies. I believe that you indeed DID hurt your back at work. Again, my thoughts, I'm not a doctor. When you hurt your back it caused acute muscle spasms. Then, from lack of taking care of yourself (at your own admission - sitting hunched over for hours of video game enjoyment), you developed chronic muscle spasms that have pulled your spine out of whack. Now whether it has become structural or not is up to you and your doctor to find out. S/he may not be willing to do bending x-rays because of the cost of extra x-rays and the fact that your scoliosis is mild. In my opinion it's best to find out when it is mild so you can get appropriate treatment before it progresses. This may be why you don't fit any particular model. I don't think your accident "caused" your scoliosis. I think it exacerbated what was there and you didn't follow through in taking care of your back. Because of this and your age (I know you're still young) you may be developing degenerative scoliosis. My ex had degenerative scoliosis from undiagnosed DDD at the age of 34. It was enough to classify him as "disabled" due to pain. He did not have scoliosis that we knew of prior to a work injury where he pulled his back muscles which set off a chain of events that made his discs worse and induced chronic muscle spasms and pain.

Looking at your coronal x-ray (thank you for sharing), I can immediately see the lumbar curve. I had to look a little harder to see the thoracic curve even though it measures larger. On your external standing image of your back I could also see a little lumbar curve despite your shorts being uneven (I was looking at your hip bones). Looking at your sagittal x-ray I can see that your shoulders are rolled forward and you seem to have a bit of a larger kyphosis. It doesn't appear this way on your external pictures. Did you slouch for your x-ray? If not, it just may be hidden externally by the way you stand. You seem to be quite muscular through your shoulders and upper back and not so much through your torso and lower back.

My advice to you is to work on your posture and exercise those core muscles. We should all be doing that whether we have scoliosis or not. If nothing else, it may save you a lot of lower back pain in the future. If you already have lower back pain, it will help (from experience). And finally, be THANKFUL that it isn't worse and try to keep it that way.

If it makes you feel any better, my original scoliosis never fit a pattern either AND I developed it early on in life. Now, at my age, it has become degenerative scoliosis and will continue to progress per my neurosurgeon that I saw back in May.

Best wishes,
Rohrer01

Pooka1
01-26-2016, 05:29 PM
Scott,

I generally agree with your measurement. I eyeballed it at between 10 and 20 degrees so was glad when you came up with 16 degrees.

There is no way at this point to determine how long you had that curve before your shoulder/neck injury. There are no radiographs from before your injury so it is impossible to know. You may have had it as long as you have had the LLD. I would bet lots of money you can not only bend that out but overbend it the other way. I agree with Rohrer that is probably isn't AIS but who knows.

The symptoms in your arm at the time of injury point to a neck injury, not a back injury. The neck is where the nerves to the arm originate. There is probably no reason to relate your neck/shoulder injury to the small curve at the bottom of your thorax. I am surprised they imaged your whole back and not just your neck given your symptoms. Just because you had a small curve does not mean it was affected by or affects anything associated with your injury. You can have two issues that don't affect each other.

I agree with Rohrer that you may have muscle spasms from something associated with the injury that never healed. Or you could have a third issue unrelated to the first two that is involved in that. Who knows. At least your curve isn't getting larger and appears stable this entire time.

By the way, did a chiro tell you you had a LLD? I think that has to be determined more rigorously from lower body radiographs and not by a chiro eyeballing it.

Glad you posted the radiographs.

sjmcphee
01-27-2016, 07:22 PM
Hey Rohrer,
Its not that I'm worried about people thinking I'm lying about my measurements, it's more that I think people won't believe me when I say that the 'injury' started a 'system of bad biomechanical loading within my spinal column'.
Altered biomechanics if you will. I don't want people thinking I've been making all this fuss over something that isn't even real.
I'd rather people considered the idea that something different happened to my spine and scoliosis (than compared to normal AIS patients) than think I'm wrong about seeing a 'system of bad load loading' take place as a result of that work injury.
I'm sure that you be able to see from that first photo of my back that even though I was bent over the box in a weird sort of position that something isnt quite right about the structure of my spine.

Regarding Sharon, I didn't think she was being particularly malicious, maybe thoughtless and talking about me like I'm not right here listening, and insinuating that its all in my head and that I dont have scoliosis.
Thats how I've been made to feel ever since this all started and its the one thing that is likely to make me feel pushed in a corner and to lash out in response.

As for that paper on 'vicious cycle' she found, yes she does deserve credit for finding it, and I should've told her so, she did good.
I thought I'd struck gold too when I found it, but I've spoken with Ian Stokes and I came to understand that we're referring to different things.
It just so happens that 'vicious cycle' is a good description to describe both ideas.

If my terminology on a few things is incorrect then I accept that criticism as being valid, I just hate being made to feel like a liar and/or crazy when I say that the injury started a system of bad loading in the structure of my spinal column.
I do understand though that others will bring proprioception to mind and say "your just feeling things moving around and must be mistaken" rather than my argument which is "I'm feeling and trying to describe very specific things that follow a system".

As for 'vector', say I drew a line on a piece of paper, and then I was able to pick up that line and wave it around.
What do I call that line now that its it 3d space? That's what I was referring to when I said 'vector'.
What if I have 4 lines all in 3d space joined together, like a straight piece of wire that's got 3 sharp bends in it?
What do I call that?
That's what I meant by a 'vector set', I know its incorrect but I still don't know what else to call it.
I shouldn't have called it 'planes' yesterday, really its just a set of lines connected together in 3d space.

I do have a little 3d modelling experience, but not enough to say I'm skilled in any way in it.
Most of the things you mentioned are known to me, however I really enjoyed your presentation. Lol
Regarding planes, I know that in the scoliosis sense there's coronal, (though I can't remember if I'd heard it called frontal), sagittal (which in relation to xrays is also referred to as 'lateral view'), and axial planes (I think I've heard it called transverse plane).
But I did not know about oblique plane.

Ive made basic models in 3ds max (software) with tutorials such as cannon, apartment block, chandelier, and aeroplane a few years back but I'm not at a skill level where I can manipulate moving objects within a model, well not a spinal column model anyway.
I tried, I actually have a spinal column model for 3d software on my pc somewhere.
I actually downloaded a 1 month trial version of 3ds Max yesterday, after reading your message so when I get around to it, I'm going to show you what I mean by these lines, and create a viewable 3d movie to show it.
http://www.autodesk.com.au/products/3ds-max/free-trial#


I'm not convinced I have AIS either, I didn't seem to have the rapid progression seen in AIS patients in adolescence.
The SRS says LLD doesn't cause scoliosis, but I find it hard to believe that there isn't a relationship between the LLD and the spinal curvature that must have developed prior to my work injury, so I agree with you on that point.

And I don't think I fit in the Degenerative Scoliosis category either. (Dear SRS, Please Explain...)
So I guess technically my scoliosis category should be 'uncategorized' and thus requires further investigation.

Maybe that initial spinal curvature could have been managed with a shoe lift, but since I'm all 21st century I would've said "Chop the leg! and shove some bone in there to equalize leg lengths".
I don't think a shoe lift would work now because of the 'altered biomechanics'.

I never really understood the terms 'structural' and 'functional' very well, they are confusing terms from my point of view of having a 'structural' injury and I need to look them up again.
I have to say it never really occurred to me to get bending xrays, though I don't really understand their purpose, I can say I probably would've liked to have had the freedom to choose a few xray views of my own.
I really wish I could get right in there around T6 and have a real good look at whats actually gone wrong.
I would've liked to have had the freedom to explore all it properly.

I can't speculate on which curves developed first in the years prior to my work injury because I didn't have any xrays until after my work injury.
I wasn't specifically aware of any LLD or spinal curvature prior to my injury, though there were some tell-tale signs that should've been enough that I should've gone and gotten it checked out, but unfortunately for me, I didn't.

I've always felt that no treatment would work unless it was based on the exact system of altered biomechanics that I already see occurring.

[Hey random question, you mentioned getting xrays done by a doctor or chiropractor - Do they do their own xrays in the US? In Australia xrays are done by a radiologist. A specialised person who does xrays, ultrasounds, CT scans etc. They arent done by the Doctor or Chiropractor themselves.]

I'd probably agree with you that I wasn't taking very good care of my back prior to my work injury, but I didn't know about the spinal curvature or LLD.
If I hadn't have been so ignorant and paid attention to the fact something wasn't quite right and got it looked at and found out about these things maybe I would've taken better care of my back, and thus avoided the injury.
But where my opinion differs is that as a direct result of that injury something changed structurally.
One day it was 'normal biomechanical function' the next day it was 'altered biomechanical function'.
Whether I did or didn't take care of my back after the injury is only a secondary issue to the main problem that something structurally had changed and the biomechanics are operating in an altered state as a direct result.

The story of your ex and his work injury and scoliosis sounds interesting...
Does a degenerative scoliosis like this have a curve pattern?

Regarding my frontal Xray, its funny that I also have another xray at home where the thoracolumbar curve was measured at 20 and the lumbar at 12, in 2009.
I want to see if I can get it scanned so I can look at it with the digital software and share it, as well as get new xrays as well.

That digital xray software is awesome too btw, and I actually looked up and found you can download it online though other radiologists and use their logon PACS address (as they make it available) but to get your own PACS email address your organization needs to be registered with them, and I think its something scoliosis.org members on this forum should have access to.
I think its something everyone should be using and so I want to look more into that for myself.

Yes, I think from memory that sagittal (lateral) Xray they might have asked me to cross my arms and hunch over, but I cant exactly remember, usually I put my arms out at 90 degree to my body and like they would be if they were folded or crossed, only with one forearm laying flat on the other instead, and whilst standing.
I cant remember if the radiologist did it differently that time, (sometimes they do that - it annoys me) If it looks like I'm hunched over I probably am.
I will say I do have a little bit of a kyphosis around T3-T4, just a little lump that I can feel which is significant in the altered biomechanics I wish I could better define.

Oh yeah, you got cranky about my use of 'lordosis in kyphosis'.. Lol.
Sometimes my descriptive terminology is sloppy..
What I mean is an 'element' of lordosis in kyphosis.
Not necessarily a whole lordotic curve like Cervical or Lumbar that you will see in an xray.
I sometimes just shorten it out of laziness which probably changes the description a little.
Sorry for the confusion.

I do get out and work on the farm where I live here and there.
A few paid hours a week and sometimes more, 10 or 15, though sometimes it really takes it out of me.
I've got a motorbike which I also ride around the farm on sometimes too.
I just got my motorbike license on NYE and have to get it registered now as I don't have a car atm.

Pooka1
01-27-2016, 09:43 PM
I'm not convinced I have AIS either, I didn't seem to have the rapid progression seen in AIS patients in adolescence.

Most small AIS curves do not progress, rapidly or otherwise, in adolescence or at any time. If you didn't have a LLD, your small, non-progressive curve would be typical of AIS. Because you have a LLD, hopefully you only have a functional (reversible) scoliosis.


The SRS says LLD doesn't cause scoliosis, but I find it hard to believe that there isn't a relationship between the LLD and the spinal curvature that must have developed prior to my work injury, so I agree with you on that point.


LLD doesn't cause a STRUCTURAL scoliosis. It apparently can cause a FUNCTIONAL scoliosis.

http://www.webmd.com/back-pain/tc/scoliosis-cause


Nonstructural (functional) scoliosis

Nonstructural (functional) scoliosis involves a curve in the spine, without rotation, that is reversible because it is caused by a condition such as:
- Pain or a muscle spasm.
- A difference in leg length.


Structural scoliosis

Structural scoliosis involves a curve in the spine, with rotation, that is irreversible and is usually caused by an unknown factor (idiopathic) or a disease or condition such as:
- Disorders that were present at birth (congenital), such as spina bifida, in which the spinal canal does not close properly; or a disorder that affects the formation of bones. These curves can be harder to correct. They often get worse as the child grows, especially during the teen years.
- Nerve or muscle disorders, such as cerebral palsy, Marfan's syndrome, or muscular dystrophy.
- Injuries.
- Infections.
- Tumors.

rohrer01
01-28-2016, 04:44 AM
Scott,

Yes, I did get corrective about kyphosis/lordosis. You either have a measure of one, the other, or a straight spine. You can't have an element of one within the other. I still stand by that. It's not being cranky. It's defining terms. I've also heard frontal plane and coronal plane used interchangeably. I would stick with coronal just in case I made a mistake. I had my recent rib fracture diagnosed with an oblique x-ray. It was VERY unpleasant.

If you have a line with three angles in it, it would be called a line, point, line, point, line, point, line. There would be an angle at every point. A line moving around in space would be characterized by using a set of linear algebraic equations. That's what higher math is used for. The mathematicians use higher math (way beyond me) and turn it into computer code so that the IT nerds (my son is one, lol) can make their moving pictures and video games! :-)

I stand by my last statement of not being able to tell if you back muscles look different from one side to the other. Of course they do, but you have one arm stretched forward and the other at your side. Anyone's back musculature would look askew in that position. You need to bend over and let your arms dangle toward your toes. Then and only then could anyone see anything amiss.

In the USA radiology technicians take the x-rays for the most part, while the radiologist (specialized medical doctor) reads them. Any licensed medical doctor "can" read them, but the radiologists take extra training in that field. I had one procedure done a couple of months ago that I found out was done by a radiologist. It was a procedure that was usually done by a technician and read by a radiologist, but he wanted to see it on live fluoroscopy for himself (moving x-ray).

Because your curve has been stable for years, I don't think that your work injury caused your scoliosis. I think it was a secondary finding, sorry. My exes scoliosis was caused by DDD. It was discovered by x-ray after the work injury. The injury caused the muscle spasms. I think something similar happened to you. Since you can't say for sure "what" caused your scoliosis, then you would fit into the IS (idiopathic scoliosis) category unless otherwise shown. Now with your hypothesis of the imbalanced loading, I will be curious to see what your next set of x-rays look like. If it progresses and you show absolutely NO sign of spinal wear and tear (even normal for your age), then that will pique my interest a little more. I do believe you can "feel" little things going on in your body if you are one that is in tune with yourself. I can feel my scoliosis progress at times. It's harder for me to feel now that I don't walk normally anymore. My gait has changed from muscle disease, and probably my scoliosis, too. But glad to hear that your back isn't hurting so badly that you can ride a motorbike! Be careful and wear a HELMET!

I can't say that degenerative scoliosis that develops as strictly degenerative scoliosis would follow a typical pattern. If there is a scoliosis already present, I would guess that it would, as in my case. Your scoliosis does seem to follow a typical right thoracic pattern which I believe is the most common pattern. Lefties are less common, but they still fit a pattern. Yours would be called a thoracolumbar curve.

I hope you have a good day. Not sure the time zone difference.

Rohrer01

sjmcphee
01-28-2016, 07:49 AM
Scott,

I generally agree with your measurement. I eyeballed it at between 10 and 20 degrees so was glad when you came up with 16 degrees.

There is no way at this point to determine how long you had that curve before your shoulder/neck injury. There are no radiographs from before your injury so it is impossible to know. You may have had it as long as you have had the LLD. I would bet lots of money you can not only bend that out but overbend it the other way. I agree with Rohrer that is probably isn't AIS but who knows.

The symptoms in your arm at the time of injury point to a neck injury, not a back injury. The neck is where the nerves to the arm originate. There is probably no reason to relate your neck/shoulder injury to the small curve at the bottom of your thorax. I am surprised they imaged your whole back and not just your neck given your symptoms. Just because you had a small curve does not mean it was affected by or affects anything associated with your injury. You can have two issues that don't affect each other.

I agree with Rohrer that you may have muscle spasms from something associated with the injury that never healed. Or you could have a third issue unrelated to the first two that is involved in that. Who knows. At least your curve isn't getting larger and appears stable this entire time.

By the way, did a chiro tell you you had a LLD? I think that has to be determined more rigorously from lower body radiographs and not by a chiro eyeballing it.

Glad you posted the radiographs.

Hey Sharon,

Yeah I get what you are saying about the nerves in my neck, and I'm not debating it, but an actual structural injury did occur around T3-T6.
I heard it, felt it, felt the result of it, and the Chiropractor noted the inflammation there.
Maybe something happened up in my shoulder / neck area as well, since it was partially caused by the movement of my arm (and lateral flexion) and partly from flexion / extension (leaning over the box).

My legs were measured by a leading orthopedic surgeon, the head of orthopedics in my state.
But he did it with one of those soft plastic dressmakers measuring tapes by hand, and said there was a 1cm difference.

Pooka1
01-28-2016, 08:44 AM
Hey Sharon,

Yeah I get what you are saying about the nerves in my neck, and I'm not debating it, but an actual structural injury did occur around T3-T6.

In the soft tissue around your spine, right? That makes sense with the description of the movement you did. Is there any evidence you did anything to your actual spine in that area? Your symptoms map to hurting your neck not your thoracic spine. You would have different symptoms if you hurt T3-T6 which you didn't have so it was only soft tissue that was injured luckily.


I heard it, felt it, felt the result of it, and the Chiropractor noted the inflammation there.

That was the soft tissue, yes? How could you have actually injured your spine with that movement? If that was possible everyone would have a spinal injury much of the time but we don't see that.

Pooka1
01-28-2016, 09:09 AM
Scott, just to finally get some piece of mind, maybe you could ask an orthopedic surgeon if it is even possible to injure your actual spine between T3 and T6 doing what you did. I am not sure why you didn't think it was a soft tissue injury. The nerve maps would rule out your injuring T3-T6 based on your symptoms as I understand this.

sjmcphee
01-28-2016, 09:18 AM
Scott,

Yes, I did get corrective about kyphosis/lordosis. You either have a measure of one, the other, or a straight spine. You can't have an element of one within the other. I still stand by that. It's not being cranky. It's defining terms. I've also heard frontal plane and coronal plane used interchangeably. I would stick with coronal just in case I made a mistake. I had my recent rib fracture diagnosed with an oblique x-ray. It was VERY unpleasant.

If you have a line with three angles in it, it would be called a line, point, line, point, line, point, line. There would be an angle at every point. A line moving around in space would be characterized by using a set of linear algebraic equations. That's what higher math is used for. The mathematicians use higher math (way beyond me) and turn it into computer code so that the IT nerds (my son is one, lol) can make their moving pictures and video games! :-)

I stand by my last statement of not being able to tell if you back muscles look different from one side to the other. Of course they do, but you have one arm stretched forward and the other at your side. Anyone's back musculature would look askew in that position. You need to bend over and let your arms dangle toward your toes. Then and only then could anyone see anything amiss.

In the USA radiology technicians take the x-rays for the most part, while the radiologist (specialized medical doctor) reads them. Any licensed medical doctor "can" read them, but the radiologists take extra training in that field. I had one procedure done a couple of months ago that I found out was done by a radiologist. It was a procedure that was usually done by a technician and read by a radiologist, but he wanted to see it on live fluoroscopy for himself (moving x-ray).

Because your curve has been stable for years, I don't think that your work injury caused your scoliosis. I think it was a secondary finding, sorry. My exes scoliosis was caused by DDD. It was discovered by x-ray after the work injury. The injury caused the muscle spasms. I think something similar happened to you. Since you can't say for sure "what" caused your scoliosis, then you would fit into the IS (idiopathic scoliosis) category unless otherwise shown. Now with your hypothesis of the imbalanced loading, I will be curious to see what your next set of x-rays look like. If it progresses and you show absolutely NO sign of spinal wear and tear (even normal for your age), then that will pique my interest a little more. I do believe you can "feel" little things going on in your body if you are one that is in tune with yourself. I can feel my scoliosis progress at times. It's harder for me to feel now that I don't walk normally anymore. My gait has changed from muscle disease, and probably my scoliosis, too. But glad to hear that your back isn't hurting so badly that you can ride a motorbike! Be careful and wear a HELMET!

I can't say that degenerative scoliosis that develops as strictly degenerative scoliosis would follow a typical pattern. If there is a scoliosis already present, I would guess that it would, as in my case. Your scoliosis does seem to follow a typical right thoracic pattern which I believe is the most common pattern. Lefties are less common, but they still fit a pattern. Yours would be called a thoracolumbar curve.

I hope you have a good day. Not sure the time zone difference.

Rohrer01

Hey Rohrer,
I was going to wait until tomorrow to reply, but I couldn't help myself.

When you say I can't have an element of one in the other (kyphosis/lordosis) ...then I kind of think this is awesome news... because we are getting down to the nitty-gritty...
I wish you were here, or I was there, because then I could just show you exactly what I mean and let you feel it for yourself...
There is a tiny little element of lordosis in my normal kyphotic curve, and this is the basis for the instability and all the bad loading that I'm trying to say has been occurring in my spine..
This is the 'why' I have the altered biomechanics and the system of instability I'm talking about.

That's what the tiny little concaves and covexes Im talking about essentially are - tiny little elements of kyphosis and lordosis.
And remember how I said that that these concave / convex instances also occurred at the junction of the spines natural curves?

Also, try to understand something I'm trying to convey...

These concave and convex instances if you will... have a coronal element and a sagittal element to them..
Its a compression/tension (or facet joints in motion type) element for the convex or kyphotic element, and an rotation of the trunk (or axial rotation element) for the concave or lordotic element.

Now because you've got this structural point where the concave and convex meet intervertebrally, whats happening is that instead of affecting adjacent verterbrae, the stretch and unstrech of connective tissue affects other regions of the spine.
I want you to have a look for the specific deep muscles that start at transverse process (both sides) and arise about 6 vertebrae and connect to spinous process.
This is the basis for the coronal element and the sagittal element at these concave / convex junctions

Now think about this that little concave and convex around T6 the the center of my spine.
On the top side of that concave / convex instance - the spinous process ligaments are stretching down to the lumbar region, or at least enough to affect the thoracolumbar junction.
On the bottom side of that concave convex instance - the transverse process ligaments are arising up to cervical region, or at least enough to affect the cervicothoracic junction.

So all it takes is for that screw up to occur from that 'element of lordosis' from this injury I told you guys about, and you set in place the conditions for the spinal column to destroy itself.

Whether or not you believe me, if you didn't live on the opposite side of our planet, I'd gladly come round and show you.
And you do have to admit that if I'm wrong, it still is pretty elaborate and creative this whole altered biomechanics thing I'm trying to describe hey.
If I'm making it up or my minds somehow mistaken and warped then you still gotta give me credit because my stories pretty sound.
I think it makes logical enough sense and ticks all the boxes but hey, I'll have to come up with a better way to share what I'm trying to put forward.

Oh yeah and when I said 'cranky' I meany it in a funny jokingly way, not a serious way, just so you know.
Also I read yesterday thoracolumbar curve is actually a curve where apex is at T12 or L1.. Mines at T10 I think, so does that actually make it a thoracic curve instead.
And my numbers weren't as big as what I thought, and this +/- 5 thing, plus I'm gonna get new xrays soon when I can get there.
Don't go thinking its stable just yet, we'll just wait and see.

sjmcphee
01-28-2016, 09:23 AM
Hey Sharon,
Yes I do need to prepare / develop a really good plan for the next time I go see an orthopedic surgeon and make sure I ask all THE RIGHT questions.
I just haven't exactly figured it out just yet.

Thanks for listening both you guys and sorry if I was rude to you Sharon.

Oh and by the way Rohrer, its GMT +10 here, 12:22am, just after midnight.

And actually I'm petrified of riding the bike on the road, although I can ride ok, but I'm too used to having the protection of a car when on the road.
Its feel like I'm out there all unprotected on a motorized seat.

It's not the best on my back either but its kind of the only option I have other than public transport atm until I get another car.
Maybe I should just settle for a cheaper car, but I'd rather get something that I like instead of dislike.

green m&m
01-28-2016, 10:08 AM
Scott with the movement you made, you may have had clay shovelers fracture. It usually happens at C6/7 but can happen at thoracic levels.

Pooka1
01-28-2016, 10:11 AM
Wouldn't that show up on the radiographs?

green m&m
01-28-2016, 10:31 AM
Wouldn't that show up on the radiographs?

It should, but I think if it was a hairline fracture with lots of soft tissue tear it won't.

I was in a car accident once and the same day (later, not immediately during the accident) I heard a pop in my upper thoracic spine with pain and actually had pain for months afterward, with no obvious xray changes. Probably around T4ish.

Dr. said possible clay shoveler esq injury and there wasn't much that could be done without an obvioius change on xray. Apparently healed 1 -2 yrs later because that area no longer hurts.

sjmcphee
01-28-2016, 07:23 PM
Oh great...
So if and when all this is said and done.. I'll go down is history as suffering from 'Box Taper's Syndrome'... Awesome [sic]

Hello green m&m,
I haven't heard of 'Clay Shovelers Fracture' before, so I googled it and found a wikipedia explanation. (Probably not the most reliable)

"Clay-shoveler's fracture is a stable fracture through the spinous process of a vertebra occurring at any of the lower cervical or upper thoracic vertebrae, classically at C6 or C7.[1] In Australia in the 1930s, men digging deep ditches tossed clay 10 to 15 feet above their heads using long handled shovels.[2] Instead of separating, the sticky clay would sometimes stick to the shovel; the worker would hear a pop and feel a sudden pain between the shoulder blades, unable to continue working. The mechanism of injury is believed to be secondary to muscle pull and reflex with force transmission through the supraspinous ligaments. The tremendous force pulls on the spinous process producing an avulsion fracture. The fracture is diagnosed by plain film examination."

Not sure what to make of it right now as there are some differences in what I did but it does seem interesting....
Thanks heaps for contributing...

Also Sharon,
I found this: http://www.thejoint.com/spine which supports what you said about the numbness I felt in my arms immediately after the injury.
Its an interactive flash presentation, if you hover over C7 and T1 you'll see that the nerves are indeed going to my arms here.
Its interesting that it wasn't just my neck as you said it was, but specifically right at the junction of the spines natural curves.

LindaRacine
01-28-2016, 09:42 PM
Scott... Please post a link of your most recent lateral xray.

sjmcphee
01-30-2016, 05:15 AM
Hey Linda,
My last one's weren't since 2011 / 2012 so I'm going to get them done again as soon as I can.
(these are the only semi-recent ones I have images of)
I've got the referral already for my xrays and it includes a request for the lateral views.
They'll be on disk and I'll measure them with the Inteleviewer software and post them like I did with the others.
I'll have another look at the ones I have and if there's anything worth posting I'll add them.
Thanks

rohrer01
01-30-2016, 11:28 PM
Hey Sharon,

Yeah I get what you are saying about the nerves in my neck, and I'm not debating it, but an actual structural injury did occur around T3-T6.
I heard it, felt it, felt the result of it, and the Chiropractor noted the inflammation there.
Maybe something happened up in my shoulder / neck area as well, since it was partially caused by the movement of my arm (and lateral flexion) and partly from flexion / extension (leaning over the box).

My legs were measured by a leading orthopedic surgeon, the head of orthopedics in my state.
But he did it with one of those soft plastic dressmakers measuring tapes by hand, and said there was a 1cm difference.

Sometimes you can hear and feel a sudden "injury" (not saying you didn't injure yourself). But it could be a POP in the spine just like your knuckles pop. People crack or pop their backs all the time. That doesn't mean you have structural damage. You could definitely have swelling in the soft tissue from the strain/sprain. Sometimes a sprain can be worse than a broken bone because soft tissue actually tears.

Pooka1
01-31-2016, 10:05 AM
but an actual structural injury did occur around T3-T6.
I heard it, felt it, felt the result of it,

What exactly was the result of the injury around T3 to T6 that you felt?

By the way that website you found of the nerves that are controlled at each level was excellent.

sjmcphee
01-31-2016, 06:57 PM
Hey Rohrer,
My knees are like that, they click a lot of the time when I bend them.
It was more of a crunch (x2) than a pop, but similar to a chiropractor making an spinal adjustment.
Only, there was tingling and numbness in my arms and I had no strength to hold things, and I could feel that something was structurally out of place in the spinal column.
I think there probably was some soft tissue damage.

If you asked me if I truly believed there was a structural element of lordosis locked in the thoracic region of my spinal column, then I would say yes, I'm certain of it, and it is the basis for all the bad structural loading - 'altered biomechanics' that I've been trying to say for all these years has been occurring as a part of my scoliosis, which began as a result of that work injury. - Yes.

To put that in some kind of perspective though...

First I understood that I'd done something serious to my spinal column and that its normal oreration had altered.
Secondly, I understood what was going wrong, so I was frantic but believed I had the knowledge to fix it.
Thirdly, I thought I could help all of you as well.

I mean what are the chances that someone witnesses a biomechanical system of instability within a curve pattern involving concaves and convexes structurally, but it turns out that this does not have anything to do with the majority of scoliotic cases?
It seems that this may indeed be the case, and what I did may be something completely different that doesn't usually happen in other scoliotic cases, even though I believe that the underlying system of instability I've tried to define can indeed apply to other curve patterns.
I had every reason to think I was right, though I also have to look at whats missing.
The reason why other patients didn't come forward with similar information, probably isn't because I'm any smarter than anyone else, its most likely because they never had the same things occur as part of their scoliosis in order to define as I did in the first place.

I wasn't wrong to come forward and to try to get the questions answered.
I've been witness to a biomechanical system of instability in my scoliosis and this is still important knowledge, and as a patient, I also don't fit into any normal scoliosis category so its not unreasonable for me to seek some kind of an explanation.

sjmcphee
01-31-2016, 08:20 PM
Hey Sharon,

The actual result of the injury.

I've tried to explain this before, but its hard to kind of visualize it with the limited sort of into I can give.

Thinking about the first crunch.
It didn't occur by accident, I must've somehow first put forces upon my spinal column in a manner that when my arm passed parralel to my body that the injury could occur.
So in the movement that 'lined me up' for the injury I leaned forward over the box activating flexion/extension.
I also didn't bend my elbow and lift it over the box, I kept my arm straight and reached it up and around and onto the top of the back of the box (kind of like when you write the 'top side' of a 'figure 8' and a little bit like that box shovellers movement)
So I did this at the same time I was bending forward...
And I'd pretty quickly and accurately slap the tape gun down on the back of the box and then almost without pause and in a almost in an entirely single movement continue on with the movement of taping the seam of the box with my arm straight and cut the tape off as soon as my arm cleared the box and passed parralel to my body. CRUNCH

Also, the box was too big for me.
The box was probably about an inch or two too high for me to do this without putting a large amount of pressure and stress in my shoulder and spinal column to clear the box.

It was in the way my spinal column was in that bad position and motion that the forces of flexion / extension and lateral flexion on my spine through that motion that something went wrong somewhere.

The 'crunch' equals a structural spinal adjustment thats created a level of axial rotation.
Theres only a certain number of moving parts in there articular facets and rib facets.

The first crunch somehow changed the structural loading of my spine so that when I brought my arm back parallel to my body another crunch took place.

I cant say for sure the combination of what went wrong whether its rib facets on different levels to produce opposite directions of axial rotation of one articular facet and one rib facet but I know theres both a coronal and sagital component to what the result of the bad loading is.
And if I had've been able to take my research ideas to the next level I could've figured out exactly.

In the days following the injury I could feel the small structural deviation changing and it seemed to be following a system and getting worse. It was unstable and changing, but the changes followed a system.

A concave on top of a convex changing to become a convex on top of a concave.

I tried to exert all sorts of forces on my spinal column in order to try to put it back into place, and through placing these forces on my spinal column I saw that if I tried to place the forces of flexion / extension and lateral flexion in my spinal column in a way that placed pressure on that concave/convex I found I couldn't put it back into place but something else would happen.

If I tried to straighten the bend at the concave (that intervertebral element of lordosis) the forces of trying to straighten the concave would in turn accentuate the convex, and likewise if I tried to straighten the bend of the convex it would accentuate the curvature of the concave.

The result of that injury was a region to region system of bad loading where the loading of the entire spinal column has become compromised.

Pooka1
01-31-2016, 08:36 PM
Scott, so the result of the injury near T3-T6 was the changed loading, not pain, right?

If there was no pain, how do you know there was an injury or even a change in that area of your spine?

And if there was pain, how do you know it wasn't all soft tissue?

I am just trying to understand what happened and how you are interpreting it. You now know the arm issues were associated with a neck injury and not an injury to T3-T6. So I am wondering why you think anything to do with your spine happened in T3-T6 if you had no pain or only soft-tissue pain. If there was no pain traceable to T3-T6, why not assume some or all of the rest of your spine that also doesn't have pain was altered? Why not assume it is all soft tissue except your neck which clearly was injured because of the arm symptoms?

sjmcphee
01-31-2016, 09:32 PM
Hey Sharon..
Yes it was a good little interactive feature on that site, I'd like for scoliosis websites to have a lot of cool features like this that utilize the webs capabilities.
I've only done a little bit of playing around with flash, and all these different kinds of web software takes time and perseverance to learn.

I've been looking at charts in the last day or so and how I could utilize them into articles for scoliosis websites.
Studies and statistics and things... Maybe even just general articles if they can be of use.
There's a demo of these charts here down the bottom of the page but I don't have them on the template I'm using atm.
http://demo.rockettheme.com/joomla-templates/xenon/

I tidied up my scoliosis test website and forum from 2013 a little bit here, yes I know the color scheme is terrible.
(And yes I did steal the forum categories from here but its only a test, I don't intend running or moderating a forum of my own, unless its a forum for scoliosis website improvements)
I want to create some fake pages next and figure out how to best link specific articles to specific forum topic discussions. Related Topics/Forums etc
My test site (http://www.scoliosistv.com/index.php/forum)
I created a login with permissions to create, edit and publish articles on the website as well as also having global moderator privileges, because I've turned off new user registrations.
I'm testing this functionality out.
The Username is 'Demo' and Password is 'Scoliosis2016' if anyone wants to try it out.
You'll notice that once your logged it you have access to not only moderate the forum, but also modify the main website pages.
Usually you'll see a text input box like in the forum, only I'm using a code editor instead.
Please don't save any changes, but you are welcome to look.

sjmcphee
01-31-2016, 09:59 PM
Scott, so the result of the injury near T3-T6 was the changed loading, not pain, right?

If there was no pain, how do you know there was an injury or even a change in that area of your spine?

And if there was pain, how do you know it wasn't all soft tissue?

I am just trying to understand what happened and how you are interpreting it. You now know the arm issues were associated with a neck injury and not an injury to T3-T6. So I am wondering why you think anything to do with your spine happened in T3-T6 if you had no pain or only soft-tissue pain. If there was no pain traceable to T3-T6, why not assume some or all of the rest of your spine that also doesn't have pain was altered? Why not assume it is all soft tissue except your neck which clearly was injured because of the arm symptoms?

No it was definitely painful, it was why I was taken by my work foreman straight to a doctor, where I was immediately given a week off.
Everything from my shoulder down to T6 felt red raw... if that's any description.
I spent the whole week laid up on my back and even when I went back to work it was still somewhat painful and I knew it wasn't right and getting worse.
That's when I went to the chiropractor and was diagnosed.

(I've always kind of known and never disputed that the numbness in my arms was related to my neck area.
Maybe it pinched a nerve up there in part of the way my spine 'lined itself up' immediately before injury itself occurred.
Maybe in order to create an element of lordosis in thoracic it had to take something from the lordotic curve)

How do I know it wasn't just soft tissue - because I could feel a structural change -(like actually feel it - reach around with my left hand and feel it there) and I also felt the changes occurring across my entire spinal column and see that they occurred as a complicated 'system'.
I am going to figure out more creative ways to explain myself better though in time, well I hope to anyway.

Pooka1
01-31-2016, 10:02 PM
Everything from my shoulder down to T6 felt red raw...

Yes but how much of that was soft tissue and how much from anything to do with your spine (besides the obvious injury to your cervical spine as evidenced from your arm issues)?

Essentially you had obvious symptoms from a nerve issue in your neck but no obvious symptoms of spine injury below that, yes?

sjmcphee
02-01-2016, 01:43 AM
Yes but how much of that was soft tissue and how much from anything to do with your spine (besides the obvious injury to your cervical spine as evidenced from your arm issues)?

Essentially you had obvious symptoms from a nerve issue in your neck but no obvious symptoms of spine injury below that, yes?

I might have had pins and needles down the insides of my legs as well but I honestly can't remember now and wouldn't like to say for sure, it was 17 years ago.
I might have written this fact down in one of the earlier recounting of the events about my scoliosis that I wrote years ago, but I'd have to search through my computer through these old documents and look, and my computers a little messy atm.
I know I had it in my arms because I couldn't hold an air drill when I tried to do a different job (putting together the bbq hoods) before I asked to be taken to the doctor.
The pins and needles and numbness went away after a day or so but it was the structural problem that remained and that was getting worse which gave me reason for real concern.
It was slightly misaligned, it wouldn't realign and this what I focused my attention on in the days that followed as I took time off and looked towards getting back to work.

Pooka1
02-01-2016, 07:08 AM
I might have had pins and needles down the insides of my legs as well but I honestly can't remember now and wouldn't like to say for sure, it was 17 years ago.

If you had them, they don't map to T3-T6. They map to much lower. It seems like you didn't injure your spine in T3-T6 but only the soft tissue near there because you have no spinal injury symptoms from that area.


The pins and needles and numbness went away after a day or so but it was the structural problem that remained and that was getting worse which gave me reason for real concern.

Is it possible you are interpreting a soft tissue injury as a structural problem given you had no effects of a structural problem other than your neck associated with the injury? The small curve lower down was pre-existing and so is not related.

jackieg412
02-01-2016, 08:15 AM
I have not followed this post totally but I can make a comment on the arm pain and pins and needles. I have been dealing with that for awhile. Some of these sensations can be attributed to the brachial plexus. If you work with your hands by reaching out or overnight head you can flare these nerves. The nerves come out of the cervical 5,6,7 and travel through the shoulder and arm. It can cause extreme pain and strange sensation.
I also have several ribs that have developed deformed because of scoliosis. They snap at the spine when I move in certain ways. But I am already fused in that area and I think you may not be.

Pooka1
02-01-2016, 05:08 PM
Scott I just wanted to make one more comment about proprioception. You had that curve in your lower back for years and your proprioception completely failed you in letting you know that was there.

Given that, how can you rely on your proprioception to detect changes in you upper spine that are too small to show up on a radiograph? Again, I think if you ever take riding lessons you will never trust your proprioception at all for determining anything about your spine or legs or whatever.

Just a comment.

sjmcphee
02-02-2016, 01:53 AM
Instead of all being constant naysayers why don't you instead do something constructive, like help me give scoliosis on the internet a facelift?
Form an 'NSF internet improvement committee' and we'll work together with ideas to get professional fundraising established to that we can actually do some real good?
I want to do constructive things not go around in circles.
My circuitry isn't wired that way and I don't have the patience for it, sorry.

Pooka1
02-02-2016, 08:04 AM
I don't see you coming up with any answers of what category of scoliosis I actually belong to???

Only a surgeon can tell you but I would bet you either have a small AIS curve or a small functional scoliosis associated with a LLD. A surgeon or radiologist would have to determine if there was rotation evident on the radiograph to determine if it is AIS or a functional scoliosis. The curve may be too small to detect rotation even if it is AIS. In any case, I bet you could bend it out even if structural because it is so small.

sjmcphee
02-02-2016, 09:01 PM
Sorry for getting snarky, but you push me into this position every time Sharon.
I was going to edit my post, but it looks like I don't need to, Thanks and sorry Linda.

I spent hours last night reacquainting myself with 3d modelling.
And I succeeded in creating a set of 4 lines in 3d space accurate enough in the way I want it.
- My vector set.. (or line, point, line, point, line, point, line... thingy... Rohrer Lol)
I created 4 long skinny 'cylinders' then rotated them individually into position on equal angles.
There's a problem in the way you view these angles in that it doesn't matter if you look from either the back or the side.
The set looks the same, so trying to represent it in 2d images just doesn't work, you'll see what I mean later when you see from both views.
So I had to do something in 3d modelling I haven't done before, which is to place a camera in my scene and set it on a target point in my scene and then create a path for the camera to move on, while remaining fixed on the target, in order
to create a video.
And I succeeded in doing that.
Otherwise you'd have to install software that allows you to directly view the 3d model.

Next I had to create a time frame.
The original scene I created with the camera moving around my object took 5 seconds.
So I stretched it out to 10 seconds.
The problem was when I rendered the short video and saved it as an .avi file on my compuer it had some settings done in a way that made my 10 second video 28.5mg (double the 5second video size) and with a bitrate of 23040 kbps which is way to much to play without lag.
It was set to render in full hd 1080p but somehow the output height and width was only 720 x 480 pixels even though it should've been 1920 by 1080... so I tried fixing it but couldn't figure out what was wrong there...
The video file played on my computer ok, but you would probably need a really good internet connection to play it properly over the internet, and mines not that good.
So I tried uploading it to my site anyway to see if I could make a link that would play it, but the file exceeded maximum upload size, and I had to add .avi to my list of allowable file types, so I had to change some settings inside the administration of my site and I tried it again and still it failed, maybe there was another setting somewhere messing with me, so not to be outdone, I connected to my host via ftp and tried uploading it directly to my site in binary.
And I succeeded in doing that.

So then I tried accessing the file directly from a link and it actually plays though its a little jittery on my computer from the lag.
I have VLC media player installed on my pc, and I think this media players feature of being able to run in my web browser may have allowed it to play, so I'm not sure if it will work for others if they don't have VLC media player installed.
Its good software for sharpening video quality in cam movies, that's why I have it, it's not software you'd particularly regret downloading for any reason (eg spyware or viruses).

http://www.videolan.org/vlc/download-windows.html

My Video (http://scoliosistv.com/images/my-video2.avi)
My Screenshot (http://scoliosistv.com/images/my-screenshot.png)
My Screenshot 2 (http://scoliosistv.com/images/my-screenshot2.png)

So now I have to figure out what was going wrong and how to render my animations at a lower output so the files wont be so large and also I have to learn about encoding videos to reduce their file size and bitrate...
So sorry about the quality and image size of the video, I'll fix it when I figure it out...

The 4 lines you might see (if you are able to) wont seem like anything interesting at this point.
Don't be deceived into thinking its looks simple enough because its about to get a million times more complicated.
That is if I'm successful in conveying what I want to show..

Its through this one set and 3 more sets just like it that I was able to make sense of the loading of the altered system of biomechanics in my spinal column.
I'm going to have to create another video (and test playing normal video files from my site properly) to show what these lines relate to, and their relationship to the other sets, and how they relate to the natural movements of the spine in my altered biomechanical system.

The good news is that even though my model today might seem crap, maybe if I persevere I might in time actually be able to use that 3d spinal column model I have eventually. Doubtful, but possible...
I haven't done any 3d modelling for at least 5 years or web design for around 3yrs so it will take time to improve.

sjmcphee
02-03-2016, 02:34 AM
This is kind of what I feel in the center of the thoracic region.
I'm not sure I did it exactly right, but its good enough... for now.
(creating shapes and adding bending modifiers to them)
Think of this as the point at T6.
Concave and Convex - What I Can Feel (http://scoliosistv.com/images/junction.png)
As I run my fingers down my spine along spinous process this is what I feel.
I feel a dip, a concave, which is not just a tiny element of lordosis, but it also has a sideways lateral element to it.
As I continue further down and over onto the convex side I notice that the relationship between the two spinous processes is not exactly right, its a little out of alignment.
They are on different angles.
As I continue further down and feel the convex, I can see that it doesn't just have a kyphotic element to it, it also has a lateral element to it.

Now I don't know if anyones really paying attention, but these angles correspond with the angles of those lines in the previous image when looking down from the top view.
(The only reason that image was rotated on an angle btw was because the shadow from the lighting in the model was in the way)

For the second 'vector' set, you need to take the image of those 'vectors' and flip it upside down and turn it inside out so that you get that straight midline 'vector' (previously shown in upper thoracic) in the lower thoracic.

(The normal kyphotic curve was been divided, and is now effectively 2 regions.)

If these first two sets are top to bottom and bottom to top, then the next two are inside out.
'middle to top and then bottom back to middle', and then 'middle to bottom and then top back to middle', in a manner in which cervical and lumbar also get those 'midline' vectors.

Next you'll be asking "so we have 4 regions, but only 3 junctions - what gives?
That's where the problem at T3 and T4 comes in.
Its a junction but not a real junction like the others, its the geometric equivalent of a junction.
Like an 'S' but cut in half so that its kind of like two interlocking C's (one back to front) instead.

The only thing I haven't explained at this point is how to use the spines natural movements in this 'altered system' to find these different 'vector' sets.

You know when you lean forward slightly you start to activate flexion / extension and bend the lower part of your back?
Or activating flexion / extension higher up in your spine if you lift your arms up and sort of feel the changes in the upper part of your back?
Finding these vectors is kind of like using your back in that see-saw kind of a way within this messed up system.
I can activate flexion / extension and lateral flexion at one end of my spinal column to stiffen up and isolate the vector sets.

Its in this manner through the use of these 'groups of lines':) that I could determine the level of axial rotation at every level (above and below at these junctions) and how the loading was systematically changing.

sjmcphee
02-03-2016, 07:23 AM
Only a surgeon can tell you but I would bet you either have a small AIS curve or a small functional scoliosis associated with a LLD. A surgeon or radiologist would have to determine if there was rotation evident on the radiograph to determine if it is AIS or a functional scoliosis. The curve may be too small to detect rotation even if it is AIS. In any case, I bet you could bend it out even if structural because it is so small.

Hmmm...
Ok in the case of small AIS curve, tell me do you subscribe to Professor Stokes theory that AIS is caused by a 'vicious cycle' of growth and asymmetrical loading of the growth plates?
If so... then how do you propose that I have AIS if there was no rapid progression during growth?
Its a fairly simple argument. Scoliosis 101 mate...
Are you saying his theory is wrong or what exactly? What do you think?
I don't have any known hereditary predisposition so where do I fit into your AIS theory now?
I thought AIS was a condition that affected mainly women, mums, daughters, sisters and nieces. I'm not even a girl.
Unless of course you believe that after reading my original x-ray report I may have some evidence of degenerative scoliosis.. no?
And the SRS still say that LLD don't cause scoliosis so are you saying you disagree with the SRS?
You think as I do that the LLD might be related to my scoliosis?
Did a spinal curvature or bad posture cause the LLD or did the LLD cause the spinal curvature? Well?

So if there's no structural problem in scoliosis then why do millions of people go see chiropractors to get spinal adjustments?
And if there is a structural issue in scoliosis then how DO YOU THINK IT STARTS?
With only a concave, or only a convex or both?
Maybe you think structural problems start in multiple locations at the same time.
Why do you think I specifically said two crunches in my spine?
Why not one, why not three?

And what is a functional curve anyway - is there any explanation for it other than what you can see in an xray?
No biomechanical explanation? Is it just curve progression? Spinal Rotation?
And why wouldn't you see rotation? isnt it +1 +2 etc and seen in the pedicles, just as easily as iliac apophysis for skeletal maturity?

And so what actually do we know about scoliosis apart from curve patterns?
Any consensus on the DNA front?
Oh that's right your scolioscore was a dismal failure, another pump and dump stock for someone to get rich...
What about biomechanics do we know how that works?
Your traction chair, seems to be making some patients curves worse.

They cant even get their trial and error based treatment protocol right, they still come up with failures.

Years tipped into research and what exactly have you got - NATA

Why run me down?
Whats your angle?

Is it you are all pleased with the current trial and error treatment regimen and just come here for the social value?

Yes its good to keep asking others questions so you can make them look stupid... Not
Maybe some people get their jollies from this type of behavior, not me.

You people think I make my scoliosis story up for fun?
I'm not that creative sorry.
It took me 17years just to make a stupid model with 4 lines in it.

Pooka1
02-03-2016, 08:15 AM
If so... then how do you propose that I have AIS if there was no rapid progression during growth?

You may have had rapid progression during growth. You are conflated speed of progression with extent of progression. You may have had rapid growth to get the curve where it is. You didn't have extensive growth and the curve stayed small. A small, non-braceable, non-surgical curve is the most common AIS curve as I understand it. You have the most common type and size curve for AIS (small T curve) if it isn't just a functional curve.


And the SRS still say that LLD don't cause scoliosis so are you saying you disagree with the SRS?

No I don't disagree. It is exactly as I posted earlier. LLD can cause a functional scoliosis which is what you might have. LLD does not cause a structural (AIS) scoliosis.


You think as I do that the LLD might be related to my scoliosis?
Did a spinal curvature or bad posture cause the LLD or did the LLD cause the spinal curvature? Well?

LLD is genetic as far as I know or perhaps due to injury. It can drive a functional scoliosis per that reference I posted. If you wear a shoe lift the curve might completely disappear if it is a functional curve due to a LLD. It is just a temporary bend in the spine that can be bent out. In contrast, no amount of shoe lifts will make a structural AIS curve disappear because there is rotation and wedging due to pathology.


So if there's no structural problem in scoliosis then why do millions of people go see chiropractors to get spinal adjustments?

There is a structural problem within the spine in structural scoliosis. There is no structural problem within the spine in functional scoliosis.

Millions of people go to chiros because they are not aware that it is nonsense. Millions of people read their horoscopes and think that is about them also. It is not news that millions of people believe false things.


Why do you think I specifically said two crunches in my spine?
Why not one, why not three?

Why do you think crunches translate to changed structures? When you crack your knuckles did you change the structure of your hand?


And what is a functional curve anyway - is there any explanation for it other than what you can see in an xray?
No biomechanical explanation? Is it just curve progression? Spinal Rotation?
And why wouldn't you see rotation? isnt it +1 +2 etc and seen in the pedicles, just as easily as iliac apophysis for skeletal maturity?

A functional curve has no rotation because it is just compensating for something else. The spine is just bending like it bends at other times.

AIS is not simply a functional bend because there is pathology driving the wedging of the disc and vertebrae that causes the rotation which causes the curving.

In functional scoliosis, the initiation of the curve is outside the spine like a LLD. In AIS, the initiation of the curve is a pathology within the spine and is either disc wedging or anterior overgrowth or something causing rotation.


You people think I make my scoliosis story up for fun?

I have never thought you were lying. I think you are mistaken. When it comes to scoliosis patients, I think virtually none of them are lying. I think many are often mistaken about many things because they are lay people. I am a lay person and I could be mistaken because this isn't my field. My questions are posed to allow you to see this. If you or anyone could feel minute positions of each of your vertebra then why do you need radiographs? Why expose yourself to the radiation if you can feel every exact position of every vertebra? Please consider that.

Pooka1
02-03-2016, 12:28 PM
I don't have any known hereditary predisposition so where do I fit into your AIS theory now?
I thought AIS was a condition that affected mainly women, mums, daughters, sisters and nieces. I'm not even a girl.

You don't have any KNOWN relatives with it. But that doesn't mean you don't have any relatives with it, especially with small curves they may not know about. If you didn't injure yourself, you wouldn't know you had a curve either.

I would have said there is no scoliosis on either my side or my husband's side before our daughters were diagnosed. After I mentioned scoliosis to the families, it turns out there is scoliosis on both sides of the family including a surgical AIS case in my husband's cousin that was never mentioned until that point. My Aunt has a scoliosis that is now obvious to me after I knew what to look for. Or you could have a spontaneous AIS case or it could just be a functional scoliosis from your LLD.

Surgical AIS cases are mainly girls/women. But I think the distribution of small, non-surgical curves is more even between girls and boys.

You are a textbook AIS case in my opinion because you have the most prevalent type and relative size of curve for AIS.

rkochis
02-03-2016, 01:39 PM
This is currently the "hot" post with almost 4500 views. I have been entertained as I scrolled through some of the exchanges. The most recent post got my attention and I felt compelled to reply.
As a 69 y/o male with 63 degree thoracic and 48 degree lumbar and .82 " LLD on left leg. I have the Radiology reports to prove it.

Most people consider this a severe case. It hasn't really bother me except for the rib hump.

I believe that my greater than 3/4 " short left leg caused my spine to compensate by creating the "S" curve. In addition, my body is twisted. I equate that with rotation...(could be wrong)

I have given some thought about the possibility that the spinal curves caused the LLD. I wish I had Radiology reports when I was 5, 10, and 15. I wasn't diagnosed until I was 16.

I have worked really hard to use PT to correct my condition. (including the straight arm plank exercise discussed in other posts). I created my own program which is a hybrid of several.

I work at it a couple hours a day. The pain I had 6-7 years ago is gone. Occasionally, I get sore when I over do it.

I wish I knew if I had structural or non-structural (functional) scoliosis. Comments welcome. No one in my medical journey has ever mentioned it.

I was encouraged that Pooka1 stated that non-structural scoliosis could be fixed once the LLD issue was resolved. I have worn a lift for several years and feel that my PT is helping. Later this year I intend to have new xrays to try to quantify what I feel. I am positive I have changed my body. I can tell by how it feels when I lie on the floor or the bed. It is not as twisted as it was.
I have no clue what my spine is doing. My posture has improved significantly. The rib hump is not as obvious as it was.

I would urge sjmcphee to get into a daily disciplined PT program. I wish I would have started when I was his age. As bright as he appears to be, he will figure it out and have a full life.

Pooka1
02-03-2016, 02:16 PM
I wish I knew if I had structural or non-structural (functional) scoliosis. Comments welcome. No one in my medical journey has ever mentioned it.

Maybe Linda can comment but the only way I have ever heard mention to tell the difference is how muchyou can bend it out as documented on radiograph.

Given the size of your curve, I am guessing your surgeon just assumed it was structural. There was an ususual case on the forum where a woman had two large non-structural curves. It is my understanding this is exquisitely rare but I don't know that. She still chose to fuse her thorax which straightens the lumbar because it is non-structural in the hope of avoiding her lumbar from ever getting structuralized and
Needing to be fused.

That's my recollection.

LindaRacine
02-03-2016, 09:59 PM
As far as I know, functional curves never get to be large S curves.

I really don't understand why this issue continues to be discussed. Scott believes something about his spine, and no amount of debate is going to change that. Why don't we just move on?

Pooka1
02-03-2016, 10:06 PM
As far as I know, functional curves never get to be large S curves.

I really don't understand why this issue continues to be discussed. Scott believes something about his spine, and no amount of debate is going to change that. Why don't we just move on?

He is suffering from bad info. Suffering. I thought I could ease his suffering with better info. He doesn't want better info apparently.

Pooka1
02-03-2016, 10:14 PM
By the way, do you rememebr king14? She was able to bend out BOTH her large curves. Neither was structural. I think that is EXQUISITELY rare! I think she should be a case study.

Anyway, she had the thorax fused to try to save the lumbar from getting structuralized. Here's her radiographs...

http://www.scoliosis.org/forum/attachment.php?attachmentid=1364&d=1348369570

People reading this should not get any false hope that their large curves are not structural. Probably 99.99999% of large curves are structural (except in a false double which is actually a single structural curve pattern). And king14 still got a fusion even though she didn't have a structural curve so maybe all that matters is that you have a large progressing curve at that point.

I am still amazed at king14... my amazement never went away.

burdle
02-04-2016, 04:39 AM
As far as I know, functional curves never get to be large S curves.

I really don't understand why this issue continues to be discussed. Scott believes something about his spine, and no amount of debate is going to change that. Why don't we just move on?

I read this and was quite shocked.

Discussion is always valuable - and also being able to talk about things can soothe the mind. yes some of the discussion has got heated at times but it also has been acknowledged. When two people get together and discuss it is always valuable - communication is everything.

You don't have to get involved if you don't wish to.

sjmcphee
02-04-2016, 06:31 AM
You want to know what the dumbest part of this whole thing is?
All it would take is for someone who's heard my story to actually spend just 5 minutes taking a look at my spine for themselves.

I've had a long day, and I need to get up early to work in the morning.
Thanks to those of you who responded, I will reply to everyone tomorrow.

Pooka1
02-04-2016, 08:03 AM
I read this and was quite shocked.

Discussion is always valuable - and also being able to talk about things can soothe the mind. yes some of the discussion has got heated at times but it also has been acknowledged. When two people get together and discuss it is always valuable - communication is everything.

I generally agree with you that discussion is or should be valuable. But I also agree with Linda that some people are not going to let go of bad information if they have held it for years. I just thought that Scott became obsessed with his back after a small curve was found incidentally with his shoulder/neck injury. Had he not gotten that radiograph showing the curve in the lower back, he would never have erroneously tried to connect it to the shoulder/neck injury. He wouldn't be completed obsessed with folk biomechanics in trying to connect two things that are unconnected. And he wouldn't think he can see things that can't even been seen in a radiograph. The people doing actual biomechanics are using college level math and physics and graduate level anatomy and physiology. And they are using radiographs for a reason and not just looking at people's backs.

This is why it is a shame Scott saw that curve and spent so much time on this.

Also, honest discussion is valuable but not possible in some cases like with the CLEAR chiros as you have seen. They count on people being misinformed about chiro so they can continue selling $3,500 vibrating traction chairs that do nothing to help a curve.

rohrer01
02-04-2016, 05:30 PM
Hey Rohrer,
My knees are like that, they click a lot of the time when I bend them.
It was more of a crunch (x2) than a pop, but similar to a chiropractor making an spinal adjustment.
Only, there was tingling and numbness in my arms and I had no strength to hold things, and I could feel that something was structurally out of place in the spinal column.
I think there probably was some soft tissue damage.

That sounds like a lower neck injury. (bold mine)
I have neck problems and similar symptoms.


If you asked me if I truly believed there was a structural element of lordosis locked in the thoracic region of my spinal column, then I would say yes, I'm certain of it, and it is the basis for all the bad structural loading - 'altered biomechanics' that I've been trying to say for all these years has been occurring as a part of my scoliosis, which began as a result of that work injury. - Yes.

Impossible unless you are severely hypokyphotic like me. You clearly lean the other way per your sagittal x-rays. (bold mine)


First I understood that I'd done something serious to my spinal column and that its normal oreration had altered.
Secondly, I understood what was going wrong, so I was frantic but believed I had the knowledge to fix it.

(bolds mine)
Your injury sounds like soft tissue swelling that began to take place immediately. This DOES alter your normal operation of the spine.

It's so sad that this makes you feel frantic. That in and of itself can make your symptoms feel worse. I hope you don't still feel frantic and have learned to live with your very small curves.

If you had the knowledge to fix it, why didn't you? You admitted staying home from work playing video games while off work. This isn't going to help the swelling or help fix your spine. Yet you obsess over it...??? It confuses me that you claim to have all this knowledge, which we established is false according to your explanation, and did everything counterproductive to help yourself including trying to argue with researchers that had already researched your ideas. This made you more frustrated, and I might say angry that you felt/feel that no one is listening or taking you seriously. We are. But you have to be open minded enough to admit to the facts. You have no proof that your scoliosis wasn't already present. It was a secondary finding.

When I look at your coronal x-rays, I can see your spinous processes almost dead center throughout your curve. My daughter has a curve of similar magnitude as you and NO rib hump. This means there is very little or no rotation at all. The curve just isn't large enough, or that type of curve. Some people with smallish curves will have HUGE rotation and very little lateral curve. My DIL was that way and had to have surgery. She literally was having what looked like the crankshaft effect with no hardware so she ended up needing fusion for a curve under 50o. She was 48o laterally.


I mean what are the chances that someone witnesses a biomechanical system of instability within a curve pattern involving concaves and convexes structurally, but it turns out that this does not have anything to do with the majority of scoliotic cases?

I don't believe you did. You felt popping, like you said you would feel from a chiropractor. Some of that was probably "knuckle crunching" in the spine and some may have been stretching or small tears in soft tissue. This isn't going to give you scoliosis or alter your biomechanics indefinitely, unless you never let the soft tissue injury heal properly.


I had every reason to think I was right, though I also have to look at whats missing.

What's missing is the logic of what really happened to you. You won't accept rational explanations and insist your case is unique. In a way it is. We are ALL unique. If you really think you have come upon this great break-through, then you have to figure out a way to explain it. The researchers are well aware, as most of us are, that we have altered biomechanics. Since your spine is so "level", referring to your spinous processes, you seem to have less altered biomechanics than most of us. Are you limited in your range of motion? Are there things that you can't do because of your curvature and altered biomechanics? I'm not being snarky or mean. I really do want to know if this limits you in any way.


The reason why other patients didn't come forward with similar information, probably isn't because I'm any smarter than anyone else, its most likely because they never had the same things occur as part of their scoliosis in order to define as I did in the first place.

I also had a work injury where I felt more like a crinkle in my lower spine. Afterward, not only did my lower back hurt, but my upper back started hurting worse than it had before. It was so much that I sought medical attention and was seen by a scoli specialist. The work injury affected my L5/S1, which the surgeon didn't even look at. My upper curve had progressed a little, but I do NOT believe it was a result of hurting my lower spine. My upper curves were stable for a good ten years after that. My lower back has continued to degenerate.

I blame the upper back pain on holding myself differently to compensate for the lower injury. That's what we do. It's not a conscious thing, usually. We change the way we sit, stand, walk, and do just about everything else when we are injured. That doesn't mean that we've started a system of altered biomechanics that lasts a lifetime. We heal and get back to normal. I just happen to have a deformed L5 and my neurologist said that the Spina Bifida Occulta (that's what it's called) CAN be painful. I never completely healed as the injury caused a bulging disc which was the start of DDD, and continued to have intermittent pain in both the lower and upper spine. I was 29 when my "injury" happened. However, I chose not to dwell on it and I have had many years of a very active lifestyle despite a lot of intermittent pain (I've had since a kid) that gets worse as I get older. Now I'm in my 40's and unfortunately, people in their 30's and 40's start to develop spinal degeneration. Some hold out longer, some don't, as in the case of my ex who was disabled from DDD in his thirties. I have DDD in my L5/S1 and it HURTS! MY scoliosis HURTS. I'm a rarity as I've heard that most people don't have as much pain as I do from scoliosis. But, I have some sort of neuromuscular disease which likely contributes a lot to that pain.

My scoliosis doesn't fit a particular pattern. I've yet to meet a doctor that has seen a curve like mine. YOURS fits a typical right thoracolumbar curve. You can see the curve all the way to your pelvis. That's why I interpret it that way, even though you disagreed in my previous post.

You may be one of the unfortunate ones who have degeneration. Ask your doctor if he sees any degenerative changes. IF he tells you he sees nothing out of the ordinary for someone "your age", then that means there ARE changes going on. That has nothing to do with your original scoliosis, except it may degenerate from age WAY later on. Likely never to surgery unless you have a lot of degeneration.


I wasn't wrong to come forward and to try to get the questions answered.
I've been witness to a biomechanical system of instability in my scoliosis and this is still important knowledge, and as a patient, I also don't fit into any normal scoliosis category so its not unreasonable for me to seek some kind of an explanation.

No you weren't wrong to try and get questions answered. That's why we're here, for answers and support.
I think the part you feel you are missing is the support. I think you don't feel supported or validated. I'm sorry for that. But those of us that try to give you reasonable explanations for what you are feeling are trying to support and validate you. But you are very stubborn, as you know.

You have to remember that we ARE taking the time to read your posts and your ideas. Isn't that validation. How would you feel if no one ever commented on your threads? It takes a LOT of time to respond to your lengthy posts and we are giving you that validation and support by doing so. I hope you understand that.

You are a real scoliosis patient. However, you obsess way more about it than most. That's not going to be good for your psyche. It will give you a disability complex where you may limit yourself. My advice is to live life and not to obsess so much over this. Keep track of it but don't dwell on it. Think of those two boys from Canada who had 120o+ curves and count your blessings.

All the best,
Rohrer01

Pooka1
02-04-2016, 06:07 PM
Rohrer, nice post! I wish I could write like that. :-)


My scoliosis doesn't fit a particular pattern. I've yet to meet a doctor that has seen a curve like mine. YOURS fits a typical right thoracolumbar curve. You can see the curve all the way to your pelvis. That's why I interpret it that way, even though you disagreed in my previous post.

Scott, Rohrer really is an example of an EXTREMELY atypical curve and situation. She has a thread with her radiographs.

In contrast, if you asked any surgeon, I am confident they would tell you your small right T curve is the most common AIS presentation there is. You are textbook AIS. Until the pre-existing curve was found as an incidental funding, you didn't claim to have altered biomechanics for which there is no objective evidence, only your subjective claims which I don't dispute but which I doubt are related to your small curve or your shoulder injury or anything with your spine. I assume your shoulder/neck injury healed long ago and you are back to where you were... with a small T curve that you never knew was there. No change other than you appear to be making yourself frantic over the incidental finding of a small AIS curve which is unrelated to your injury. You would have been so much better off had they not imaged your lower back and just did your neck where you did have an injury.


You are a real scoliosis patient.

Yes Scott is a real patient and one of the lucky ones who will probably never need any treatment in his life. Most people here would trade places with him in that regard. I wish my daughters had Scott's curve and not the one's they had.

sjmcphee
02-04-2016, 08:03 PM
Sharon,
#76 [Rohrer] I honestly don't think you have AIS.
#77 [Pooka] I agree with Rohrer that is probably isn't AIS but who knows.
#109 [Pooka] You have the most common type and size curve for AIS (small T curve) if it isn't just a functional curve.
#120 [Pooka] You are a textbook AIS.

So see Sharon you contradict yourself as well, (some have said I do, I think I just don't explain myself that well sometimes, but maybe at times I have)
Straight away there's an exception to the rule when rkochis says he too has a LLD related to his scoliosis.
Its hard for me to believe his curves at 63 degrees and 48 degeres are going to bend out or that the LLD wasnt a contributing factor in his scoliosis progression.

And for all the things you argued with me on in your first reply, the one thing you didn't bring up was about whether or not if a structural problem begins in scoliosis where its a concave or convex or both.
You avoided that, but answered everything else like an authority on it.

It annoys me that no-one ever says "What Scott is saying actually does kind of make logical sense. If hes wrong, and only has propreoception than his creative mind has done quite an amazing job."

Not only that you all claim 'proprioception' as why I must be wrong, and I feel like you are treating me like a teenager in a growing body, not the adult in a skeletally mature spine I was when this 'injury' I allege started.

You say that you are trying to help me learn something Sharon but all you are essentially doing is infuriating me, and you know it, and you do it on purpose.
I feel like I have to do battle with you every time I come here just for the right to be myself, It's no wonder I always leave.
I'm better off getting no support at all than having to deal with you, that's the honest truth.

I could argue back and forth with your earlier points but honestly that's a merry go round I've decided to take control of by choosing to get off.
You can choose to think you won if you want to, but technically I win because I wont have to put up with you anymore.

I never even get a chance to get comfortable and take the time I'd like to properly to respond to others because I'm always constantly having to defend myself against you.
I'm going to respectfully ask you Sharon from now on keep your opinions to yourself.
You could actually provide support and use the scoliosis knowledge you have to help me in a constructive way but you choose not to.
You could look for and find the papers where it was hypothesized about lordosis in kyphosis, or find other ways to help like providing feedback on my website for example but you'd rather constantly argue with me in a manner that constantly infers that I must be wrong and must be losing it when the real truth is that none of you have actually taken a good look and feel of my spine to know exactly what it is I'm trying to show and describe to you.
I'm not going around in circles with you anymore.
Really if you cannot be open minded, and also offer a path to see my claims proven wrong then you shouldn't automatically imply that I'm mistaken and jump to the conclusions that I'm not thinking clearly and continue to imply that and inflame things with me.
Also its not fair that you use 'science' to consistently refute my claims about my own scoliosis when I don't have access to or the means to the scientific tools that could prove I'm right, and you don't advocate for that, do you? No.
This is supposed to be a support group and what I get from you is the exact opposite.
Please don't post on the thread I started of 'My Adult Scoliosis Story'
I didn't choose to have scoliosis, but I can choose for YOU NOT to be in THAT story, so get lost, and 'whatever...' to any forthcoming retort you come up with in advance.
Don't bother, because I don't care.

Pooka1
02-04-2016, 08:22 PM
Sharon,
#76 [Rohrer] I honestly don't think you have AIS.
#77 [Pooka] I agree with Rohrer that is probably isn't AIS but who knows.
#109 [Pooka] You have the most common type and size curve for AIS (small T curve) if it isn't just a functional curve.
#120 [Pooka] You are a textbook AIS.

You are textbook AIS. But your curve is so small that I think it is more likely due to the LLD. If it was larger or rotation was shown on radiograph then it would be AIS for certain and not a functional scoliosis due to the LLD.

I don't think anyone has shown that LLD can't produce curves that resemble textbook AIS.

The only way to know is have a surgeon look at the radiographs and tell you if there is rotation. I think it is too small to use the bending out test because even if it was AIS, I bet you could bend it out completely. I am guessing the bending test must only apply to large curves.

None of this should be news at this point.

sjmcphee
02-04-2016, 08:33 PM
Had a little bit of a play around with my forum last night before I posted on here, testing adding youtube videos and images..
Not exactly sure what the twitter buttons for, still got to figure that one out.
This forum system has 'karma' points that you give each other when people are helpful...

One thing I've always been disappointed with on the NSF scoliosis forum is that there isn't a general forum where members can get to know each other better by sharing things that aren't specifically scoliosis related.
I've added 'Various Music, Whatever You Like, Come Post It!' (http://scoliosistv.com/index.php/forum/suggestion-box) to my forum as a start in this direction.
I think I need a general forum, like a 'Water Cooler' or 'Members Lounge' or something...

Please don't think I'm trying to take anything away from this site by playing with my own, I swear it is only a test site.
I'm more than willing to share what I know about websites etc, if it can be of help to the people who own or manage this site.
I made a new webpage yesterday as well, nothing exciting... It didn't take too long. Curve Patterns (http://scoliosistv.com/index.php/2-uncategorised/28-curve-patterns-for-scoliosis)
I'm trying to utilize existing code from the demo pages that come with the website template to make my own clean and tidy pages.

LindaRacine
02-04-2016, 09:59 PM
By the way, do you rememebr king14? She was able to bend out BOTH her large curves. Neither was structural. I think that is EXQUISITELY rare! I think she should be a case study.

Anyway, she had the thorax fused to try to save the lumbar from getting structuralized. Here's her radiographs...

http://www.scoliosis.org/forum/attachment.php?attachmentid=1364&d=1348369570

People reading this should not get any false hope that their large curves are not structural. Probably 99.99999% of large curves are structural (except in a false double which is actually a single structural curve pattern). And king14 still got a fusion even though she didn't have a structural curve so maybe all that matters is that you have a large progressing curve at that point.

I am still amazed at king14... my amazement never went away.
Did she actually post xrays of her bending out the curves, or just say she could do it?

LindaRacine
02-04-2016, 10:00 PM
I read this and was quite shocked.

Discussion is always valuable - and also being able to talk about things can soothe the mind. yes some of the discussion has got heated at times but it also has been acknowledged. When two people get together and discuss it is always valuable - communication is everything.

You don't have to get involved if you don't wish to.

This isn't even close to the first time that we've had this same conversation.

Pooka1
02-04-2016, 10:33 PM
Did she actually post xrays of her bending out the curves, or just say she could do it?

King14 did post her bending radiographs and Bederman said neither curve was structural!!!!

http://www.scoliosis.org/forum/showthread.php?13464-Ready-for-a-kicker-pictures-attached&highlight=king14

burdle
02-05-2016, 05:39 AM
This isn't even close to the first time that we've had this same conversation.

Well for new people this may not be so obvious- I don't quite see why anyone needs to post anything negative.
I thought the site was for support?

sjmcphee
02-05-2016, 05:51 AM
Hey Rohrer,
I think if this whole issue of mine comes down to showing that structural 'element' of lordosis in thoracic kyphosis then I can at least show this all day long.
Proving that I understand the rest of the state of altered biomechanics my spinal column is in might be a more difficult proposition though.

I've told you all that I don't have any genetic predisposition to AIS, which is true as far as I know and I do have a good understanding of my family history both from my parents and relatives, and ancestry.com
Though I've said that I don't have a genetic predisposition to AIS doesn't mean I don't have AIS in my family.
My stepmum Christine and her sister Marcia, both had AIS as kids, as did their cousins my Aunty Jackie and Aunty Lucy, and maybe other family members as well.
Marcia works as a nurse in a hospital in the city and was over at my place visiting her brothers (my housemates) yesterday.
I'm not sure if any were braced as kids or not.

So as well as going and getting my next set of xrays, I'm going to go see my stepmum.
It would be weird for me to ask her if I could have a good look at her scoliosis, but maybe not so weird if I ask her to look at mine.

My family know I've got scoliosis, but its not something that I generally talk to about with any of them.
I don't like to whinge and complain or even talk about my health issues within my family and friends, I play it all down.
If they bring it up I usually acknowledge it and then change the subject.

I'm going to talk to my stepmum and see what her level of knowledge about the spine is, I've never really talked to her about her scoliosis.
I'm going to see if she understands about the spines natural curves and whether she can can maybe take a look at my spine and if she can identify that 'element' of lordosis I can feel in the thoracic region.
I'm also going to ask her if she will join this site and relate her findings of looking at my spine and maybe share some of her family story about scoliosis.

I don't usually ask my family for anything, but I think its time I did.
Maybe this situation will turn more in my favor if I can have someone who knows me from a child and helped raised me for several years as a teenager and someone who herself had AIS and has a real family predisposition to AIS will look at my spine and vouch for me.

I think I can show that element of lordosis in kyphosis any day of the week.
My dad and stepmum live about an hours drive away though.

I told you all I wanted to work out some kind of a plan, but I hadn't figured it out yet... this might be a start.

Oh yeah, do you see what I mean by a vector set now?
What am I supposed to call that?
Also I don't know if you guys notice but I frequently use the word 'structural' to mean something other than the scoliosis terminology implies.
A lot of times when I say 'structural' I'm referring to 'altered biomechanics', and not a scoliosis patient who's curves are able to bend out.
How do I get around that confusing terminology issue?

Pooka1
02-05-2016, 08:01 AM
Well for new people this may not be so obvious- I don't quite see why anyone needs to post anything negative.
I thought the site was for support?

Well I can't answer for Linda but I think there is a duty to challenge incorrect and confusing information for the sake of other people. Though that is a positive thing (criticizing bad ideas) in scientific circles, it is often viewed as negative in lay circles which this forum is. It is simply not rational for lay people to dream up stuff and then get mad when it is correctly criticized. But there are 8 million instances of it, especially in the research section.

In the research section, there is enough pseudoscience, folk science, and sheer nonsense to choke 5,000 elephants. That isn't helping anyone except the few players who post it. It shouldn't stand and I try to provide pushback.

I have long thought that SSo focuses on support more than science. The lovely Tonibunny, a moderator there, knew more science than most other players. But it wasn't as front as center as much of the time as it is here. When people on NSF state they don't want to hear about science and just want support I have often suggested they try SSo. Here on NSF, though support is a goal, the moderation favors science and supports the criticism of bad, incorrect ideas stated by lay people.

sjmcphee
02-05-2016, 01:19 PM
Sometimes I just write what I'm thinking..

Right now I want to talk about the 'altered biomechanics' I've tried so hard to describe for so long and I'm wondering whether anyone actually has a level of serious deep thought to try to envisage the logic in everything that I've tried to say.
I'm wondering, does anyone actually get it?

Think about it, think really hard.
Try and imagine in your mind that there is a tiny little element of lordosis in kyphosis, a tiny little concave and convex systematically changing... concave on top of convex becoming convex on concave and back again, like in that 3d image.

Now think about those vectors (sorry Rohrer)
All the instability occurs within the boundaries of these constraints.
The angle from each line to the next is equal.
If you combine all those vector sets together, 4 sets of 4, and just like I tried to explain, in the context of the spines natural movements, then each region with its own midline vector.
You have a system where every every junction has a relationship to every other junction, because it has a piece of it.

The load at each junction only 'sits' or locked one side of the concave / convex equation, so two of the vector sets are primary, (what the load sits on) and 2 are secondary - constraints of the system.

(4 lines, 4 sets of lines 4 junctions, 4 regions)
2 of the junctions are at the junctions of the spines natural curves, one divides central thoracic, the other is a geometric equivalent to balance the equation.

Imagine one of those straight line vectors with one of those angulated vectors at every junction.
You always get a concave on top of a convex, or convex on top of a concave within these constraints, because there's a measure of axial rotation locked in at those junctions.

The system is compression/tension + lateral flexion to create a small spinal adjustment with the result being a measure of axial rotation.
Think about that different angle I showed from that the top view.
Also every time there is a junction, its going to be occurring with the constraints of those vectors.
Think of the loading on those junctions systematically changing (concaves on top of convexes changing to become convexes on top of concaves) but sequencing as a group somewhat similar to the firing order on a 4ylinder car, like 1, 3, 4, 2, for example.. (not saying that particular order is right for scoliosis though, its just an example).
But you combine or visualize the idea of that 'sequencing' as 'driving' the region to region 'system of instability' in a broken system, (4 regions -thoracic being divided by the lordosis) with the idea of deep connective tissue arising from transverse process to spinous process 6 vertebrae above and below.

Can any of you at all visualize it?
Instability, following a path, geometrically and anatomically perfect, the system is sound.
Do any of you actually appreciate both the logic, complexity, and implied mathematical certainty to what I'm suggesting I've witnessed??
Or are you all just completely unable to grasp it?

LindaRacine
02-05-2016, 11:18 PM
Well for new people this may not be so obvious- I don't quite see why anyone needs to post anything negative.
I thought the site was for support?

Some people are here for support, others are here for good information. Those two can occasionally conflict.

sjmcphee
02-05-2016, 11:23 PM
Pooka,
I think you need a little bit of humility and need to learn the lesson that the ends don't always justify the means.
Back in the early day when this story all began for me the internet was much more primitive.
We'd all talk to one another through the use yahoo groups mailing lists.
Linda Racine was there always responding to people and talking with a level of authority.
After I came to this site, I saw that she was somewhat a person of authority within patient groups etc.

Back then I was still coming to grips with what had happened with my scoliosis, though I know you all doubt that story.
I was at some level frantic to do something about what I saw unfolding in my spinal column.
I thought because I could see a system of instability within my scoliosis and that because I could understand scoliosis biomechanics I could cure everyone.

So I had this attitude, "If you are not part of the solution, by default you are essentially part of the problem"
And I had this gung-ho attitude, that the "ends justified the means".

I felt justified in abusing anyone, and accuse them of being part of the problem, if I didn't get my way.
I didn't get very far and got a taste of my own humility.

The point I'm making is lets say I'm right about my scoliosis, and that hypothetically I'm was right about being able to cure everyone else (which I'm not convinced I am) though I know I'm right about mine.
Would I be justified in treating Linda Racine or Tressa Goulding of the SRS or SRS Presidents or SRS Research Directors or researchers rudely or disrespectfully like I have done in the past?

Standing up their on the scoliosis podium with my trophy or award for recognition for my valuable service to scoliosis.

Would I feel good about myself in the way I treated people?
Would I be justified it the way I acted?

The answer is no, there's no excuse for bad behavior.
'The ends don't justify the means'.

Now I think the problem is a little bit of the NSF's own making because they have a forum that attempts to combine information and support together and you really need to try to separate them, like I've tried to do on my demo site.
If you separate the 'information area' from the 'support area' then you alleviate most of the problems, and you will also make the job of moderators much easier.
(Sooner or later you're going to have to deal with it)
But I respect and appreciate that you're all only trying to do the best you can here, with what you have.

People come here for both information and support, and you have to use your judgement carefully.
Firstly you stated 'I think there is a duty to challenge incorrect and confusing information for the sake of other people.'
I want to question your terminology and therefore you're thinking.
You said 'duty to challenge'.
Why 'Challenge'?
This implies that YOU feel that its OK for you to have an 'End justifies the means' attitude, and to argue, be disrespectful and inflame tensions with others.

Why not just state the facts and state your position?

What you're actually arguing the merits of is that you have the right to offend, badger and treat others disrespectfully in the name of 'factual science'.
Its a fine line you are walking on, in a patient support group, when you don't actually have the condition yourself.

But as I said people do come here for both info and support and people who manage and post on this forum need to have good judgement.

In the case of what is posted on the research forum, for the sake of the integrity of the information on that forum, I'd say there were valid reasons to challenge me, at least on some level when I posted there.
Especially when I was making statements that may have given other patients false hope and expectations.
But you are 100% out of line when you pull the same behavior on my own thread "My Adult Scoliosis Story"
You have the right to state the facts as you know them, state your position of the issue, and if you don't have anything further constructive to add you keep your mouth shut.

"It is simply not rational for lay people to dream up stuff and then get mad when it is correctly criticized."

Again you CONTINUE TO INSULT ME ON MY THREAD you assume I'm wrong, but you don't KNOW I'm wrong.
I'm not giving other patients false hope, I clearly state that I don't know if what happened to me occurs in other patients.
I'm not hurting anyone and not posting in the research section.
Should I be deprived of my right to tell my story as factually as I can?
Do I deserve to feel continually hounded and badgered by some other member who doesn't even have scoliosis?
Who implies [going from your comment in post #120] that I don't have the right to talk freely about what I think and feel simply because my scoliosis isn't as bad as your daughters scoliosis?

I've tried to be patient with you and I try to be respectful to you Sharon but you are continually abrasive with your 'duty to challenge' attitude.
Linda knows I can be extremely rude, blunt and abusive and that I wont hold back, but I've tried to learn the error of my ways.
Also for the sake of the integrity of the forum I do try to be respectful.
I've told you that its not in my nature so much to get upset and emotional and my real nature is to get mad.
And if you continually keep pushing me into a corner I will eventually lash out.
Not only will I lash out I'll do so in a manner that likely gets me banned, and as much as I don't want to get banned, I wont be sorry for what gets said.
And also you are taking up all my attention when I would actually like to talk to some of the others here about their contributions to my thread.

So let me put it this way and let it be crystal clear:
It would be much easier to say something short and sweet using expletives than to spend my time trying to explain how things work the nice way.
It's really much easier for me to be short and blunt.

Also why is it 'YOUR duty to challenge'?
I cant see that you are a moderator on your tag or a person who speaks for authority for this site.
So why is it YOUR duty to challenge incorrect and confusing information for the sake of other people?
Why is it YOUR duty to argue, be disrespectful and inflame tensions with others?
If science is your angle why aren't you moderating at scoliosisjournal.com instead?
Just asking...

You state "It shouldn't stand and I try to provide pushback."
Don't try to justify your behavior on this thread, I'm not posting in the research section.

Also as for science, do I seem like a person who hasn't taken every single aspect of the spinal column and its functions into account in my statements?
When I say I know how my scoliosis works have I not shown enough valid arguments that whether believed or not my statements logically match my claims?
I'm not some low level moron who has no idea what I'm talking about despite your continued insinuations.

Also you state "Here on NSF, though support is a goal, the moderation favors science and supports the criticism of bad, incorrect ideas stated by lay people."
Criticism of bad ideas may be the norm is scientific circles, but there's a missing factor between them and people in a support group and that it that people in a support group are more emotionally involved in the topics than people who are just scientists.
So 'criticizing' is not necessary a term that should be considered correct in a support group.
Again state the facts as you know them, state your position or arguments on the topic if you have something positive or constructive to add and then if you have nothing else to say then keep your mouth shut.

It is NOT YOUR DUTY to offend, badger and treat others disrespectfully in the name of 'factual science', in a patient support group especially if you don't have the condition yourself, whether your kids do or not.

Learn the lesson Sharon, fail to and the next time you insult me on my own thread I won't be so nice about it.

sjmcphee
02-06-2016, 03:04 AM
That sounds like a lower neck injury. (bold mine)
Yes I would agree it seems to look that way from the symptoms.


I have neck problems and similar symptoms.
I think I looked at your xray once before, I don't know how some of you guys cope with the curves you have.
Its really hard for me to fathom. I hope you're doing alright.
I feel bad that I seem to make it all about me and don't get as much time to spend looking at other peoples situations and take more of an interest.
I always get caught up defending myself from the way Sharon rubs me the wrong way.



Your injury sounds like soft tissue swelling that began to take place immediately. This DOES alter your normal operation of the spine.
Yes but it should go back to normal right? Not induce a whole changed system that engulfs the entire spinal column?


It's so sad that this makes you feel frantic. That in and of itself can make your symptoms feel worse. I hope you don't still feel frantic and have learned to live with your very small curves.
Yes I have learned to live with it, but its hard not get wound up over it, when I can feel it slowly but surely getting worse.
Thanks for caring and showing compassion.


If you had the knowledge to fix it, why didn't you? You admitted staying home from work playing video games while off work. This isn't going to help the swelling or help fix your spine. Yet you obsess over it...??? It confuses me that you claim to have all this knowledge, which we established is false according to your explanation, and did everything counterproductive to help yourself including trying to argue with researchers that had already researched your ideas. This made you more frustrated, and I might say angry that you felt/feel that no one is listening or taking you seriously. We are. But you have to be open minded enough to admit to the facts. You have no proof that your scoliosis wasn't already present. It was a secondary finding.
You don't frustrate me in the same way Sharon does.
1. The only way to 'fix it' was to reverse the bad loading back to the original injury through traction (if that's even possible) and then realign the original thing that went wrong.
2. Yes it does seem contradictory, I was in fact 'wrapping my spine in cotton wool' and not doing anything that I thought would aggravate the underlying bad loading... So that I could focus on understanding what was going wrong.
My lack of physio and exercise, and admittance to sitting around playing video games does seem to suggest I was being negligent, and maybe your right.
That said I've never been sure that physio was really beneficial to me (Kevin_Mc also indicated this) I feel that even though strengthening the muscles is beneficial to having a healthy spine, strengthening the muscles whilst the loading is compromised only aggravates the system. I'm not sure if this is different for different people or because my scoliosis may be different to others.
Its never been established that I'm wrong about my scoliosis, in my opinion and I've not seen any research that resembles mine in any way that would give me reason to think they truly have investigated this area of interest thoroughly.
I think Dingo once mentioned Dr Keister, and I contacted him.
He's really good to talk to because he will give you the time of day, not like some others, and he seems to have a passion for scoliosis research, doing his tethering and models.
He said he doesn't think I'm a liar, but that he thinks my scoliosis is different to AIS. He didn't seem to dispute my claims in any way but its sometimes hard to discuss these things with different terminology.
He said AIS patients have "out of balance" at around 40 degrees where Adult Scoliosis patients it occurs at around 10 degrees.
I'm not completely sure however that I understand what he meant, or if he completely understood me.
The thing I feel going wrong in my spine doesn't seem to show any evidence of itself in xrays, which makes me more intrigued to find out just exactly what it is.
I do think my scoliosis was already present prior to the injury, but at just 12 degrees I tend to refer to that part of the development of a spinal curvature mode.


When I look at your coronal x-rays, I can see your spinous processes almost dead center throughout your curve. My daughter has a curve of similar magnitude as you and NO rib hump. This means there is very little or no rotation at all. The curve just isn't large enough, or that type of curve. Some people with smallish curves will have HUGE rotation and very little lateral curve. My DIL was that way and had to have surgery. She literally was having what looked like the crankshaft effect with no hardware so she ended up needing fusion for a curve under 50o. She was 48o laterally.
Yes I'd agree with that on those xrays, but it has been slowly getting worse over time.
I can feel that its gotten worse in a way I cant easily explain and think I'm getting closer to rotation, or at least it feels like it.
What is the 'crankshaft' effect?

I know you don't believe that my injury initiated a 'system of instability' and 'altered biomechanics' but at least you aren't disrespectful about it.
I'm not completely sure whats going wrong in there, but I absolutely and most definitely see a system of bad loading as a result of that injury, and I do see that a 'lordotic' components exists locked into the centre of my thoracic region.


What's missing is the logic of what really happened to you. You won't accept rational explanations and insist your case is unique. In a way it is. We are ALL unique. If you really think you have come upon this great break-through, then you have to figure out a way to explain it. The researchers are well aware, as most of us are, that we have altered biomechanics. Since your spine is so "level", referring to your spinous processes, you seem to have less altered biomechanics than most of us. Are you limited in your range of motion? Are there things that you can't do because of your curvature and altered biomechanics? I'm not being snarky or mean. I really do want to know if this limits you in any way.
Its not that I won't accept rational explanations, its that my spinal column is telling me something different.
Until those two things correlate I have to firstly stand firm on what my body itself showed me was going on.

No I cant say I'm limited in range of motion in anyway, but it does give me some level of discomfort, sometimes pain but that just depends on what day it is..
However if I over exert myself in the way I use my range of motion 'pushing myself or stretching those muscles' it does lead to considerable more discomfort.
I'll usually feel it a lot more the following day, and if I end up consistently doing too much day after day my body doesn't take long before it starts feeling totally burned out.
Then I am stiff and sore.

sjmcphee
02-06-2016, 03:08 AM
I also had a work injury where I felt more like a crinkle in my lower spine. Afterward, not only did my lower back hurt, but my upper back started hurting worse than it had before. It was so much that I sought medical attention and was seen by a scoli specialist. The work injury affected my L5/S1, which the surgeon didn't even look at. My upper curve had progressed a little, but I do NOT believe it was a result of hurting my lower spine. My upper curves were stable for a good ten years after that. My lower back has continued to degenerate.

I blame the upper back pain on holding myself differently to compensate for the lower injury. That's what we do. It's not a conscious thing, usually. We change the way we sit, stand, walk, and do just about everything else when we are injured. That doesn't mean that we've started a system of altered biomechanics that lasts a lifetime. We heal and get back to normal. I just happen to have a deformed L5 and my neurologist said that the Spina Bifida Occulta (that's what it's called) CAN be painful. I never completely healed as the injury caused a bulging disc which was the start of DDD, and continued to have intermittent pain in both the lower and upper spine. I was 29 when my "injury" happened. However, I chose not to dwell on it and I have had many years of a very active lifestyle despite a lot of intermittent pain (I've had since a kid) that gets worse as I get older. Now I'm in my 40's and unfortunately, people in their 30's and 40's start to develop spinal degeneration. Some hold out longer, some don't, as in the case of my ex who was disabled from DDD in his thirties. I have DDD in my L5/S1 and it HURTS! MY scoliosis HURTS. I'm a rarity as I've heard that most people don't have as much pain as I do from scoliosis. But, I have some sort of neuromuscular disease which likely contributes a lot to that pain.

My scoliosis doesn't fit a particular pattern. I've yet to meet a doctor that has seen a curve like mine. YOURS fits a typical right thoracolumbar curve. You can see the curve all the way to your pelvis. That's why I interpret it that way, even though you disagreed in my previous post.

You may be one of the unfortunate ones who have degeneration. Ask your doctor if he sees any degenerative changes. IF he tells you he sees nothing out of the ordinary for someone "your age", then that means there ARE changes going on. That has nothing to do with your original scoliosis, except it may degenerate from age WAY later on. Likely never to surgery unless you have a lot of degeneration.

Your ordeal makes mine look like a walk in the park... Though I don't really know what state it will be in in another 20 years or so and that concerns me (if I make it that far).
I don't know why the doctor never looked at the area from where your injury occurred, and its unfair that it lead to such worse changes as a result.
That pain in your L5/S1 seems like a nasty place to get pain too, its almost making me cringe.
What neuromuscular disease do you have if you don't mind me being curious?
And I do think I've heard the 'someone my age' speech, I think I am starting to have the beginnings of degeneration.


No you weren't wrong to try and get questions answered. That's why we're here, for answers and support.
I think the part you feel you are missing is the support. I think you don't feel supported or validated. I'm sorry for that. But those of us that try to give you reasonable explanations for what you are feeling are trying to support and validate you. But you are very stubborn, as you know.
Yes maybe, and I appreciate you saying it, but I'm well aware of the position I've gotten myself in.
Sometimes I just don't deal with it very well.
I know I come across as being somewhat stubborn and opinionated.
But it's not stubbornness just for the sake of stubbornness.
I do believe I witnessed a system of bad loading in my spinal column (Linda knows me well enough when she says nothing anybody says will change my mind) and I wont be truly satisfied until what I've witnessed occurring in my spinal column correlates with the information given in regards to it.

You have to remember that we ARE taking the time to read your posts and your ideas. Isn't that validation. How would you feel if no one ever commented on your threads? It takes a LOT of time to respond to your lengthy posts and we are giving you that validation and support by doing so. I hope you understand that.
Yes you're right, and I do appreciate the time you and thought you all put into your comments..
I didn't think anyone was listening at first because no-one replied...
I assumed no-one knew how to take me... but that's something I've gotten used to over the years..


You are a real scoliosis patient. However, you obsess way more about it than most. That's not going to be good for your psyche. It will give you a disability complex where you may limit yourself. My advice is to live life and not to obsess so much over this. Keep track of it but don't dwell on it. Think of those two boys from Canada who had 120o+ curves and count your blessings.

Thanks for saying that...
Its something I'm touchy about because when I first was diagnosed and came home from Melbourne my mum took me up to a specialist in a public hospital in the city.
As you would understand, the guy doesn't look at my work injury but slaps the xray up on the light and says with my mum right there "You don't have scoliosis" and made me look and feel like a complete liar and an idiot.
Being made to feel like I'm a liar has always been a touchy subject ever since.
The fact that I do obsess way more than most people with my size curves actually tends to reaffirm that something is different about my scoliosis than others.

I received a email reply back from my stepmum earlier and shes willing to have a look at my back and share any findings on this site and share her scoliosis family story which is what I asked.
The reply was "No problems", so we'll see what happens.

Sorry for the slow reply to my comments Rohrer and thanks for your thoughts.
I'm trying to catch up with all the others who gave their time to comment as well.

I don't get angry with others simply because they don't believe me, I'm not irrational (I bet some of you guys question that.. Lol) and I learn from it either way - (I'm a slow learner) it just depends on how those people go about it expressing their opinion that either inspires or motivates me or backs me into a corner. Sometimes though pushing me into a corner will motivate me as you saw with me doing that modelling the other day, but mostly it just infuriates me.

Pooka1
02-06-2016, 07:05 AM
Some people are here for support, others are here for good information. Those two can occasionally conflict.

Yes luckily it is only occasionally.

Until I joined this group, I had never seen lay people wax so much as if they were experts in any field. There are (or were at this point) people who thought they could do a five minute search on google and "solve" AIS.

It's breath-taking. To read what these people write would make you wonder why we have medical schools and grad schools. Who needs those when we have google? People don't know what they don't know.

sjmcphee
02-06-2016, 12:39 PM
The reason why you might see a lot of lay people acting like backyard experts might just correlate with the fact that our real so-called experts haven't found the answers to our condition.
Your blaming patients for seeking answers when the so called specialists aren't actually specialists at all.
How can you they call themselves scoliosis specialists, when none of them actually knows what causes scoliosis, how it really works and the whole treatment system is based on trial and error?
If you cant see the reality of that, then you're living in fantasy land.

If I was one of those shonky backyard experts I may have gotten in with people that may have tried to use my ideas to create treatments for profit.
All I ever did was advocate that the research be done properly and to let that speak for itself.

I'm not sure Linda has access to create forum categories, but the final point I want to make is that if you really cared about the integrity of the information on the research forum, why didn't you look for a solution to the problem?
A really simple one would have been to split it into 2 categories "Proven Research" and "Unproven Research Ideas"

There I just fixed your problem.

You know what the difference between us is Sharon?
You want to go around in circles, and I want to find solutions.

Pooka1
02-06-2016, 03:44 PM
The reason why you might see a lot of lay people acting like backyard experts might just correlate with the fact that our real so-called experts haven't found the answers to our condition.
Your blaming patients for seeking answers when the so called specialists aren't actually specialists at all.
How can you they call themselves scoliosis specialists, when none of them actually knows what causes scoliosis, how it really works and the whole treatment system is based on trial and error?
If you cant see the reality of that, then you're living in fantasy land.

If experts trained in this field haven't figured it out, what chance do people with no training and no grasp of even the basics have of coming up with a solution? Isn't the answer zero chance?


If I was one of those shonky backyard experts I may have gotten in with people that may have tried to use my ideas to create treatments for profit.
All I ever did was advocate that the research be done properly and to let that speak for itself.

You have no reason to suggest research is not now being done properly or as good as it gets. You only imagine that.


I'm not sure Linda has access to create forum categories, but the final point I want to make is that if you really cared about the integrity of the information on the research forum, why didn't you look for a solution to the problem?
A really simple one would have been to split it into 2 categories "Proven Research" and "Unproven Research Ideas"

There I just fixed your problem.

You know what the difference between us is Sharon?
You want to go around in circles, and I want to find solutions.

That wouldn't fix the problem because lay people like yourself who are convinced you are correct would just post in the proven research forum. Other lay people I could name would do the same. Hopeless.

The difference between you and me is that I admit scoliosis isn't my field and I don't claim to understand even a fraction of what you claim to understand despite you having zero training, little grasp, no college level math and physics, no graduate level anatomy and physiology, etc. The field of biomechanics is written in a language you don't know yet you claim you are speaking it. That is a problem.

sjmcphee
02-06-2016, 05:14 PM
If experts trained in this field haven't figured it out, what chance do people with no training and no grasp of even the basics have of coming up with a solution? Isn't the answer zero chance?

One would reasonably assume so.


You have no reason to suggest research is not now being done properly or as good as it gets. You only imagine that.

It's not imagined at all.
I don't really fit into any existing scoliosis category and I don't have answers that correlate what I saw take place in my body with whats written in the literature, and I see no evidence of any attempt to do so.
If what your saying was true I could ring up the scoliosis research department right now and say: "Hey.. Umm just wondering how that research is going? Should be ready on thursday and pick up anytime friday you say? Great. Talk to you then."
If they fail to provide answers then people are naturally going to seek them out themselves.
Don't hate the player, hate the game.


That wouldn't fix the problem because lay people like yourself who are convinced you are correct would just post in the proven research forum. Other lay people I could name would do the same. Hopeless.

People like myself? I can't believe you just said that.
I may have a side to me where I seek clarification with regards to an area of scoliosis research, but I wouldn't have to do it if they did, and I wouldn't have to be in the position I'm in if patient organizations were more organized and liaised between researchers and patients when there was reason for clarification within the research. Do you get it?
I don't post in the research forum anymore and I don't mislead anyone.

Do you not think I hold the idea of the quality of scoliosis information on the internet with the highest regard and scrutiny?
Why do you think I'm playing around with scoliosis websites?
I want a scoliosis website that puts everything in its correct place.
Do you think I intend to deliberately mislead people and give them false information?
While you're making assumptions and accusations "people like me" already made the changes to my own demo site before you even replied. 2 Research Categories (http://scoliosistv.com/index.php/forum/miscellaneous)
And why the hell wouldn't I use such a feature after everything I go through with you?
Why do you think I called this thread My Adult Scoliosis Story?
So I wouldn't have to deal with you.


The difference between you and me is that I admit scoliosis isn't my field and I don't claim to understand even a fraction of what you claim to understand despite you having zero training, little grasp, no college level math and physics, no graduate level anatomy and physiology, etc. The field of biomechanics is written in a language you don't know yet you claim you are speaking it. That is a problem.

No the difference between you and me is that you don't have scoliosis, that's the REAL problem.
And I might suggest that if you were in my body you may be observing and saying the same things I am.

Linda can you tell this woman to get out of my face and off my thread before I do?
I'm not going to be continually disrespected or spoken down to on a patient forum by someone who doesn't even have scoliosis.
LAST CHANCE SHARON.

rohrer01
02-07-2016, 02:48 AM
Scott,
If Sharon bothers you that much, you can block her so that you don't see her posts. She can still post but it will come up post blocked and you don't have to read it. I'm not encouraging you to block her as I think she is truly trying to help you understand some things. She gets just as frustrated as you do. Just because she herself doesn't have scoliosis doesn't mean she doesn't know a heap. She is a Ph.D. researcher in another field and has two daughters who've had corrective surgery for scoliosis. Since she is a legitimate researcher herself, she knows how to read scientific literature. She's familiarized herself with the terms used in biology and anatomy in doing research for her own daughters. Don't discount her for not being a biologist. I think she has good intentions as do you. I give everyone the benefit of the doubt for good intentions (almost).

You never responded to my post and chose to engage in debate with Sharon. Do you really care what I have to say in response to you or are you liking the drama? You say you don't like the arguing and that you'll stop, but you continue. I keep waiting... :-(

I looked at your scoliosis curve patterns web page and there are four identical pictures with four different curve patterns posted below them. There are more than four curve patterns.

Like I said before, you DO fit a typical curve pattern. I truly do NOT. I've seen many surgeons and NONE have seen a curve pattern like mine thus far.

Your curve pattern would be a typical right thoracic curve, the most common type. Throw in the LLD and you have a little bit of a lumbar curve making it a thoracolumbar curve. IF Sharon is right and a curve bends down to below 25o, then a bending x-ray wouldn't even apply to you since your curve isn't that big as far as we know to this date. It may have progressed. I think the purpose of bending x-rays is to see how flexible the curves are before surgery so that the surgeon kind of knows what s/he's getting into before the big operation. I can't see much use for it other than that. Whether it's structural or functional has no bearing on the fact that the person still has scoliosis. I think it may impact the treatment that they get... just my honest guess. Hysterical scoliosis is another mystery in and of itself and VERY rare as far as I know. This, I doubt, would fit your case. I don't understand why you think that you don't have a typical curve pattern. Can you explain why you think this?

Like I said in my other post, you have a curve very similar to my daughter's. The degree of curvature is about the same and to my very diligent observation of my kids as they grew up (I'd check for rib humps throughout the year), I can't see a rib hump in her back even though I KNOW she has scoliosis. It's either not large enough to cause rotation or there are curves with little to no rotation.

It's kind of strange, though, because physically when the spine is bent it has to rotate a little. I've messed around with the hanging skeletons at the colleges and doctor's offices. My best guess is that the lateral curve just isn't large enough to rotate the spine to a degree that can be seen by the naked or laymen's eye. I didn't see a rib hump in your box picture. Although, I wish you would post a proper bending picture with both arms hanging toward your toes and head down. But looking at your coronal x-rays you can see those little vertical lines centered in each vertebra. Those are your spinous processes. Yours appear to be dead center or nearly so. The farther off they are from center, the more rotation there is.

I'm going to have to post my updated x-rays from last year so everyone can see how much progression there is. But even with the ones I have posted, look at those little vertical lines in the vertebrae and you can see the rotation. You will also see a curve pattern that doesn't fit any classification. ;-) It goes into my cervical area. Yikes!

I'm truly perplexed why you think your right thoracic curve isn't typical...??? If you didn't have the slight lumbar curve from your LLD, you and my daughter's curves would be almost identical.

Oddly enough I have a slight LLD, too. It doesn't seem to affect my lumbar at all. But it was my PCP measuring with a tape measure and not x-rays of my legs. That's one thing that has never been x-rayed on me!

Have a good day,
Rohrer01

P.S. There is a place on this forum where you can get to know one another. It's called PM. THIS forum wants to keep clear of clutter having nothing to do with scoliosis. Could you imagine trying to moderate people's debates on countless other topics?! You have to keep things civil and clean. So that would be nearly impossible.

Pooka1
02-07-2016, 10:56 AM
One would reasonably assume so.

Yet you were going on and on about the necessity of lay people stepping in to remedy some shortfall that you imagine exists but which doesn't actually exist outside of your imagination.



I don't really fit into any existing scoliosis category and I don't have answers that correlate what I saw take place in my body with whats written in the literature, and I see no evidence of any attempt to do so.

You have no basis to claim that. You merely claim you don't fit in an existing category because you don't understand the categories and don't realize you are a textbook case for a known category. You can't expect researchers to explain a condition that exists only in your imagination. You think there is an association between your neck/should injury and your pre-existing scoliosis that was discovered as an incidental finding. I think you got wigged out when they found that small curve and decided it must have something to do with your neck shoulder injury and decided you are in some unknown category because of that. But that is just in your imagination.


Do you not think I hold the idea of the quality of scoliosis information on the internet with the highest regard and scrutiny?

I think you hold that idea. What I doubt is your ability to distinguish between quality and sub-par information based on what you have written. You don't appear to understand this material.



No the difference between you and me is that you don't have scoliosis, that's the REAL problem.

This comment is irrational. Your subjective feelings about scoliosis are leading you away from the facts, not the other way around. For example, you think you feel minute positional changes of individual vertebrae that are too small to show up on radiograph. If Olympic riders need mirrors to help them know the position of their body parts, there is little chance you are feeling what you claim to feel.


LAST CHANCE SHARON.

This comment is irrational.

sjmcphee
02-07-2016, 04:51 PM
Yes, she does and I don't think blocking her is acceptable.
If I feel that if I'm being constantly harassed by another member who doesnt even have scoliosis and I request that she no longer posts on my thread, then in what context do others think it is ok for her to continue to do so if I'm feeling harassed by it?
Its not enough to block her, she should respect my wishes.
And I don't care what qualifications she has, I don't care if she won the Nobel prize.
Its her behavior that is simply not working for me, whether she has good intentions or not.
I don't think she realises the stress it causes me, her doing what shes doing.

I did see that you wrote a post a little ways back that I might have missed and I know I havent responded to others yet and I am feeling a little guilty about it, but I did try to go through and respond to a bigger post you wrote yesterday, I'm not sure what I didn't respond to but please don't think I'm liking the drama more than I appreciate other peoples reponses because I most certainly aren't and I'll have more to say on that soon.


I'm so glad you brought up my web page (takes my mind off the rest of things)
And yes I'm well aware of your criticisms.
If you look up the top, you'll see a link that goes to a research document that discusses 4 different types of classification systems, Ponseti, King, Lenke and Peking Union Medical College. Then theres a seperate link to the Lenke's webpage and his system. The images themselves are misleading, because they are just placeholders for the proper images later.
Its the only good-looking scoliosis image I have, I can get more from the guy who made it but they aren't cheap. Just as important, and what you don't see going on is that I stole the code from other existing pages on the template demo the site is built from to create that 'Learning Page' and the block of images all aligned neatly on that 'Curve Patterns' page. I do this for several reasons, one it helps in the design process of the page, two it helps me to know the image assets I will need and three I have the code already in place for when I add more content, and in general every time I create a page its good practice. I think I like web design more than modelling, because I'm better at it, but both can be pretty frustrating when you get stuck on something.
What I havent done, and what I really need to do is to post a 'Disclaimer' at the top of every page saying the site is a demo that people shouldn't rely on any information on the site and that if they believe they have scoliosis or need assistance they should seek professional medical advice. As well as list the srs and this forum as online resources.
The site has actually existed with the forum built into it since 2013, I originally built it as a site that would display scoliosis videos organised into categories, and maybe I was just testing the Kunena forum. But the extension I was using to display the videos was glitchy, and it didnt look good, I didnt find a solution for it so I never got it finished.
It was the same when I was building the news site. I had rss news feeds pulling in scoliosis news stories and displaying them, literally hundreds of them, but that extention was also glitchy. Sometimes it would duplicate items, and I had trouble pulling in and dislaying related images and intro text for each news item. I was able to get a list of latest news stories that would act as links, but that was the best I could do and it wasnt enough to base and entire website around so I never finished that one either. Not even sure I can build that one anymore as google has stopped making rss links to its searches, but I might actually still have the feed links, though I'm not sure they'll work anymore.

I've always been lead to believe that I had a thoracolumbar curve, but I did notice that I actually had a thoracic instead the other day when I was going through dictionary terms, and it said the apex of the curve needed to be at T12/L1 for a thoracolumbar determination.

I don't doubt that you have a unique curve pattern, and I'm not saying that mine is.
What is unique about me is my claim to understand the biomechanics of my curve pattern.
I know im right but I dont know where or how it all fits into the bigger picture.

Saying I have a typical curve pattern makes me consider the possibility that what I allege has occurred in my curve pattern also happens in others, but I don't know.

Your explanation of bending xrays was helpful, thanks.

What is the go with Hysterical scoliosis?
Is that where I think my scoliosis is progressing and its not?
Like a mental disorder (that you all think I have)
Whats the go with that?
Out of curiosity is there any common factor to whatever these people are thinking?

I dont dispute Sharons or anyone elses medical diagnosis of my situation as being unwarranted, but honestly none of the doctors specialists or researchers found any answers for me so even if shes on the mark she's no better than them and still hasn't got any real answers for me.

She could be the President of the SRS for all I care, I've spoken to several of them, but they too have no answers for me.

Thanks for sharing about your daughter.
I think one of the hardest aspects of this condition is the one where you girls have to endure the scoliosis yourself but then you have to see your kids endure it too, and I'm sure thats a hard thing to live with. Thankfully her curves are not too great. I think it must be heartbreaking for a parent who has scoliosis to see their kids go through it as well (and all the feelings associated with it). Thats not saying that mums like Sharon don't go through a lot too, I'm sure its almost as tough for them as well.

It's kind of strange, though, because physically when the spine is bent it has to rotate a little. I've messed around with the hanging skeletons at the colleges and doctor's offices. My best guess is that the lateral curve just isn't large enough to rotate the spine to a degree that can be seen by the naked or laymen's eye.

Now you're talking Rohrer... now you've got my attention.
I don't see any decisive evidence of what I feel occuring in my spine in xrays.
But I'm 100% sure its there. In fact I'm not sure, I know, and I know that damn lordotic element is there.
And I'm going to write something soon for you all to read, it will be called "Why the presumption of propreoception in my scolisois is irrational". It's going to be a counter-argument to Sharons statement (and everyone elses assumption) about the reasonable assumption that I must be wrong and thats its irrational to think I might be right.

No there was no rib hump during the time that image was taken, its only now that I think I'm possibly going through the initial stages of this development as well as spinal rotation.

I was actually wanting to make more photos and videos.
I'd be happy to do it, but I'm having some issues doing this.
I could get friends to take a couple of shots or use my camera tripod.
The problem is I can't find my damn camera anywhere havent seen it for ages and my phone wont go on the tripod.
(because its one of these ones that screw into the camera from underneath.)

I might come off as a person who just wants to go around in circles but this isnt the case.
The first thing I did yesterday after I'd made arrangements to see me stepmum about my scoliosis was go and investigate.
I went down and saw my friend and neighbour Donna and got her to feel my spine.
Shes like 'ahh' and I'm like "Yes I have a curvature in my spine called scoliosis" dont worry about that, I want you to try to feel something specifically. Then I showed her pics of a normal spine and natural curves on the internet and that I was looking to see if she could feel this element of lordosis around T6 and this is what happened:

The first thing that was immediately obvious to me is that other people cant feel it as well as I can.
I've been feeling around for the last day or so and so I have an idea of whats going on in there and I can feel it all straight away.
I reached around with my left arm and put my thumb right in the place where I feel the lordotic element in thoracic.
I even got her to get a pen and mark the exact point, I wish I'd taken a photo.
She was feeling around but I could tell that she wasn't able to feel it as distictly as I can feel it.
Then she said "I felt something just for a second, it feels like theres something wrong.. [and made a twisting motion] like its not sitting on the next one properly" So I made her feel it again. and guided her finger right to the exact spot and just for a second she said she felt it again.

Its hard for me to know what she felt, I'm not convinced that she definately felt a lordotic element (and shes no back expert) but I am reasonably convinced that she could feel that something was structurally wrong but I'm not sure thats enough to mean anything.

I would like to have a look at what rotation looks like in xrays.
All I know about it is that you can tell the level of rotation by the pedicles.

I don't necessarily think my curve pattern isnt typical, but if I dont entertain the idea that my scoliosis is different to others then by default I must also entertain the idea that I understand how other peoples scoliosis works and that I may have info that would surely help them.

I've never had my legs xrayed either.

sjmcphee
02-07-2016, 08:43 PM
Extract of feces,

Yet you were going on and on about the necessity of lay people stepping in to remedy some shortfall that you imagine exists but which doesn't actually exist outside of your imagination.
When have I said that? Your making it up and once again your insulting me so go fck yourself.


You have no basis to claim that. You merely claim you don't fit in an existing category because you don't understand the categories and don't realize you are a textbook case for a known category. You can't expect researchers to explain a condition that exists only in your imagination. You think there is an association between your neck/should injury and your pre-existing scoliosis that was discovered as an incidental finding. I think you got wigged out when they found that small curve and decided it must have something to do with your neck shoulder injury and decided you are in some unknown category because of that. But that is just in your imagination.

I can claim anything I want. I could claim that aliens abducted me and injected my spine with rubber and its got nothing to do with you.
State the facts state your position if you feel you need to, then shut your piehole.
If I am a textbook case as you see it, then maybe you should start seriously looking at the logic that I've put forward that I do know how my scoliosis works instead of trying to justify that I must be wrong simply because its the only thing that your tiny minute brain can rationally make sense to you. I'm not saying that whats occurring with my scoliosis is the same as everyone else's but I will say that not one single one of you would actually know a valid explanation from an invalid one if it slapped you in the face.
I think in this sense the benefits of me being right far outweigh any cost of If I'm wrong.
Tell me whats the cost of being wrong? not that I am.
An no you moron, I didn't get wigged out when I found out I had scoliosis, I got wigged out 2 weeks before that when I had the injury that stated the instability the followed a system.
You insulted me two more time please refer back to line 2.

Obviously you think you have the right to insult me with immunity even after I've asked you not to post, reported you to the moderator and made my case that if I respectfully ask you not to post that you should respect my wishes.
So your just an argumentative so and so but I'm sure you've been called that and more many times. - Refer back to line 2

Oh and by the way since I've reported you and got no response, I can't be sure that Linda wants me to stick my head in a noose so I will get banned so for integrity sake fck = frick.

Here's a question for you Sharon if you think you're so damn smart.
If altered biomechanics occurs in AIS, then either it was always that way or it had to start somehow.
How does it start? What have you got of value to bring to the table?
You couldn't even come up with a half decent hypothesis yourself let alone claim to have the intelligence to judge others.


I think you hold that idea. What I doubt is your ability to distinguish between quality and sub-par information based on what you have written. You don't appear to understand this material.
Well, Thanks you for believing AT LEAST in my integrity, its the nicest thing you've ever said.
(Mind you its the first anyones mentioned my site except Rohrer, and I'm making a note that technically you're still criticizing me Sharon. Whats new... You could've helped but no... Start crap instead.. That's who you are.. )
And I'm not going to argue with you on that point. I don't know the material well.
I've never lied to any of you any I'm not planning to. Its not who I am.
But I don't see any of you people making an effort and this site hasn't had an upgrade since facebook was invented.
I'm only filling a gap that has been created by others incompetence and I'll probably give up anyway so who even cares?
How many people have been lead astray by shonks because none of you guys will support the idea of getting scoliosis's act together on the internet?
How many years have I been saying it?
BAD THINGS HAPPEN WHEN GOOD PEOPLE DO NOTHING.
How much has been wasted because you wont do this and leverage professional fundraising?
And how many other members have the guts to admit that I'm right?
None because your all scared you might be seen supporting the crazy one.
PATHETIC, SELF INFLATED VALUE YOU PEOPLE HAVE OF YOURSELVES.
You wont even admit it even when I am right.

Who the hell are you that's so special to say I'm wrong?
Who the hell am I?

What are you so concerned about?
Spending a few dollars on scoliosis research that you make from profession fundraising?
This things bigger than all of us why don't we work together and get all our answers?
Don't you have any integrity of your own?
Don't you have anything worthwhile of your own to support or is all you've got ''the right to challenge and start crap with patients'?

And part of the reason I'm doing it because of my own situation, in case none of you people can have the intelligence to see that.
If another person like me came along I'd like to see them supported and given due diligence, not be left out in the wilderness forever.
Is it wrong to want that you selfish people?


Your subjective feelings about scoliosis are leading you away from the facts, not the other way around.
For example, you think you feel minute positional changes of individual vertebrae that are too small to show up on radiograph.
If Olympic riders need mirrors to help them know the position of their body parts, there is little chance you are feeling what you claim to feel.

No that's just what you believe and it's leading you away from the facts.
Stop coming up with dumb metaphors to justify your backwards thinking.
Facts that none of us will ever get to because of you influence others here with your close-minded attitude.
It wasn't irrational at all. How can you claim to know my body better than me?
You're making the claim that in your mind what I'm putting forward must be irrational because you just decided it must be, not on the basis that you actually KNOW or have tested one thing I've put forward TO KNOW for certain that its not.

Why did you name yourself after a turd? I think its fitting.
You want to keep insulting me by saying its my imagination when you DO NOT KNOW FOR CERTAIN, then it requires a equally measured response.
Go to line 2.

sjmcphee
02-07-2016, 09:05 PM
I don't even care if I get banned anymore anyway, Sharons bs outweighs any support I get anyway, so you'd probably be doing me a favor.
Actually its not fair to say that. Sharons bs makes it impossible for me to concentrate on talking to others. (So I'm sorry to those I never got time to talk to.)
I think that's her actual problem, she doesnt want me talking to anyone else lest they start thinking crazy things like me.

The part I don't get is that an actual patient comes forward, says they see a system of altered biomechanics working beneath what can be seen in an xray, and you'd all rather listen to some know it all parent then support your own.
Even if I am right about others, (and I'm not convinced I am) none of you has done anything to support me in getting those answers, and you don't deserve them.

One day the computer technology will make testing my research quite easy.
The truth will come out sooner or later.

Listen to Sharon and it doesn't matter if I'm right or wrong.
None of you will ever see it, and if you ever do you may find out I was right after all.

sjmcphee
02-07-2016, 09:29 PM
I'm not even going to bother wasting my time here anymore, none of you believe me anyway, and its like a rape victim going to a rape support group and being called a liar.
I can't stay, there's nothing for me here. Sharon's forced me to leave more times than I can ever remember.

Its really kind of stupid since even Doug Keister a surgeon and researcher with way more qualifications than Sharon even himself says that he doesn't think I'm lying.
I don't need to put up with this from someone who doesn't even have scoliosis.

Couldn't even tell my story without that cow butting in every 5 minutes with a million questions designed to stop me from sharing me story or talking with anyone else.
You can all keep her, you deserve her.
Its like the blind leading the blind.

If any of you can try to put witnessing concaves on top of convexes turning into convexes on top of concaves controlled by 4 sets of 4 vectors with equal angles configured into the spines natural movements (which makes my claim to be able to see and understand the loading at every level at least hypothetically valid) in a broken system whilst understanding the relationship between the physical forces in the spinal column and you put all this down to proprioception, whilst knowing damn well that I know how the spinal column normally functions then I'm sorry but its all of you who are being irrational. It's you that are entertaining 'absurdity' by calling propreception when actually in light of the above information, its actually the less-likely answer.

All things considered the simplest and most logical answer tends to be the right one.
Entertaining the idea of proprioception, no matter how logical it seems is actually the least likely answer when taken in the above context.

I understand that it may seem irrational that a patient figured out something the experts didn't, and I agreed with this statement, but that in itself is not enough to simply decide I must be wrong.
In the full context of what I put forward its irrational to call 'propreoception' and I think part of you all know it but are too weak minded to admit it.

Oh and tell me what do I have to gain by sharing this knowledge of mine with you?
Do you think I can reverse 17years of bad loading in my spinal column? No
There's no benefit to me whatsoever except proving I was right.
- Thanks for the support.

Just think of the good I might have done if you people had've supported me IN ANYTHING.
Stupid upside-down world.

Putting up with the bs I get here I'll need a new support group just from having to deal with Sharon.
Good luck getting your answers, just stick with the scoliscore and the scoliosis traction chair and your useless bracing studies and I'm sure you'll all be fine.
I'm sure the trial and error treatment system has worked well for everyone and trust theirs no complaints...
Best of luck

rohrer01
02-07-2016, 11:08 PM
Wow, Scott.

That was a very angry set of statements AND I took the time to read them. I feel like you are lumping everyone into the category of you hating Sharon. I guess I haven't read enough of this thread to see how mean she's actually been. But it hurts to all be lumped into one category of "Sharon".

You and I have had some progressive dialogue, I thought. You reverted back to your vector statements and lordosis within kyphosis and vice versa. I "think" what you are feeling there may either be where the curves meet. That will cause some flattening of the spine. Also, what I mean by saying you have a thoracolumbar curve is misleading you. I mean a small DOUBLE thoracolumbar curve, one in the thoracic region and another in the lumbar region...each having the apex in the opposite direction. Your lumbar would be a LEFT curve and your thoracic curve would be a RIGHT curve. Another thing you could ask your doctor is if you have any minor Spina Bifida Occultas on any of your thoracic vertebrae. My son has a couple and it feels like his back sinks in because he is missing his spinous processes on two vertebrae. That might be what you are trying to describe. I was told that about 10% of the population has Spina Bifida Occulta. It's generally harmless and is found as incidental findings on x-rays. You could also have developed a spondolysthesis in one of your vertebras. That's a shifting of the vertebra out of alignment of the rest of the spinal column. Although I think that would be a rare shot in the dark as these usually occur in the lumbar if my layperson's brain serves me well. These are all questions for the doctor.

I really think you owe RAPE victims an apology for that statement. Being contradicted on a scoliosis idea is NOT the same as being raped and going to a rape counseling group and not being believed. You should strike that if you have any conscience unless you are a rape victim. I take offense to that.

As far as the other venting, I'm hoping you aren't aiming that at me as I have tried to be nothing but supportive and helpful. Many scoliosis sufferers DO have problems with proprioception. That has NOTHING to do with feeling your spine move. Proprioception is feeling like a body part is sitting somewhere other than where it actually is, or not knowing where the body part is in space and time. That's why I can't dance! I have horrible proprioception.

If you want to see rotation, go look at my x-rays. They are in my thread "I have some imaging CD's". Look at the spinous processes and not the facet joints. They look like little vertical lines within the vertebral body on x-ray. If they are off center, that is rotation.

I will continue to talk with you as long as you are civil to me. I really felt attacked right along with Sharon because you lumped ALL of us together. Sharon and I have had our differences and worked them out via PM. I'm pretty sure I know where she's coming from and it angers people when I try to explain what I think she's trying to convey. She's tamed down a lot. Try to take what information you think is useful and ignore what you think is irrelevant. Blocking is a tool so you don't have to see replies from people who provoke you. Use it and save yourself the frustration of typing lengthy angry posts.

Try to have a better day,
Rohrer01

sjmcphee
02-07-2016, 11:15 PM
I'm not mad at you Rohrer, I'm greatful and appreciate that you gave me your time and treated me respectfully...
I haven't read all your comment but I will, though I'm not much in the mood for talking right now.