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Thread: My Adult Scoliosis Story

  1. #61
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    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
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  2. #62
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    Quote Originally Posted by sjmcphee View Post
    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.
    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."

  3. #63
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    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
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #64
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    Maybe Scott can discuss this paper in light of his work.

    http://scoliosisjournal.biomedcentra...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.
    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."

  5. #65
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    Here's another that seems similar to what Scott is working on... maybe he can comment...

    http://scoliosisjournal.biomedcentra...1748-7161-2-16
    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."

  6. #66
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    Here is a very long file with extensive Q&A.

    http://scoliosisjournal.biomedcentra...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 [5760],


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

    e)
    resorption by osteoclasts [63], or

    f)
    osteopenia [6467], 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?
    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."

  7. #67
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    Quote Originally Posted by rohrer01 View Post
    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.
    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. #68
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    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

    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?

  9. #69
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    Quote Originally Posted by rohrer01 View Post
    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
    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
    And this one is to show Rohrer a better look at the size of that box.
    Box
    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.
    Last edited by sjmcphee; 01-26-2016 at 06:48 AM.

  10. #70
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    Quote Originally Posted by Pooka1 View Post
    Maybe Scott can discuss this paper in light of his work.

    http://scoliosisjournal.biomedcentra...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.
    Last edited by sjmcphee; 01-26-2016 at 06:27 AM.

  11. #71
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    Quote Originally Posted by sjmcphee View Post
    Standing
    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.
    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."

  12. #72
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    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 and Image 2

  13. #73
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    Quote Originally Posted by sjmcphee View Post
    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 and Image 2
    Thanks Scott. What measurement did you get using the tool?

    That looks like a very complete study.
    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."

  14. #74
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    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

    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.
    Last edited by sjmcphee; 01-26-2016 at 12:38 PM.

  15. #75
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    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?

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