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.
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.
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