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Thread: My Adult Scoliosis Story

  1. #1
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    My Adult Scoliosis Story

    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-fam...ults/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.
    Last edited by sjmcphee; 11-10-2015 at 07:41 PM.

  2. #2
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    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
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  3. #3
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    Quote Originally Posted by sjmcphee View Post
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
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    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.

  5. #5
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    Quote Originally Posted by sjmcphee View Post
    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
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  6. #6
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    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.

    Quote Originally Posted by Pooka1 View Post
    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.

    Quote Originally Posted by Pooka1 View Post
    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.

    Quote Originally Posted by Pooka1 View Post
    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).

    Quote Originally Posted by Pooka1 View Post
    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.

    Quote Originally Posted by Pooka1 View Post
    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.

  7. #7
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    Quote Originally Posted by sjmcphee View Post
    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.
    Last edited by Pooka1; 11-12-2015 at 07:42 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    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.

  9. #9
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    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.
    Last edited by sjmcphee; 11-13-2015 at 07:23 AM.

  10. #10
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    Quote Originally Posted by sjmcphee View Post
    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.
    Last edited by Pooka1; 11-13-2015 at 01:54 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #11
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    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.
    Last edited by sjmcphee; 11-14-2015 at 07:49 AM.

  12. #12
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    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?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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    Quote Originally Posted by Pooka1 View Post
    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.

    Quote Originally Posted by Pooka1 View Post
    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.

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    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #15
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    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.

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