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Martha Hawes improves her scoliosis w exercise

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  • Originally posted by TAMZTOM View Post
    Tamzin, seated on floor, knees to the floor, has ZERO T and ZERO L rotation; standing, she is circa. 10 degrees.
    Okay this reminds me of Christian who basically does not seem to have a structural curve (or has almost no rotation or some combination) based on the forward bending test but has a curve standing.

    Did they ever do bending radiographs on the T curve? If they haven't then how do they know it is structural? Are there other ways to tell if a curve is structural? Based on that one paper I posted, I think the burden of proof is proving a curve associated with Chiari/syrinx is structural, not the other way around but I really have no idea.
    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."

    Comment


    • Hi everyone,
      Thanks for all your comments.
      I didn't recieve a notification that there was replies, maybe it was in one of the previous emails - It tends to stack multiple responses up into a single email in my gmail, and I missed it. I haven't had a chance to go through everyone's comments as yet.
      Just updating that I will have the powerpoint presentation I alluded to ready in the next few days.
      I won't be making it public to everyone, but I am willing to share with some of you who have been part of this discussion for the purposes of further discussion and feedback.
      - Scott

      Comment


      • Originally posted by sjmcphee View Post
        Hi everyone,
        Thanks for all your comments.
        I didn't recieve a notification that there was replies, maybe it was in one of the previous emails - It tends to stack multiple responses up into a single email in my gmail, and I missed it. I haven't had a chance to go through everyone's comments as yet.
        Just updating that I will have the powerpoint presentation I alluded to ready in the next few days.
        I won't be making it public to everyone, but I am willing to share with some of you who have been part of this discussion for the purposes of further discussion and feedback.
        - Scott
        That's excellent Scott. Please keep me in the loop!
        Joshua
        Diagnosed with 42 degree thoracolumbar scoliosis in 1996
        1997 - 45 degrees
        2003 - 29 degrees
        2011 - 27 degrees
        http://i1249.photobucket.com/albums/...osis/front.jpg
        http://i1249.photobucket.com/albums/...sis/Lumbar.jpg
        http://i1249.photobucket.com/albums/...s/Thoracic.jpg

        Comment


        • Yes Hi Josh,
          I'm not sure why I'm not getting notifications right now, so this thread got away from me, but it did give me a chance to spend a few days creating the document you all want to see.
          I've decided I will make it public, and give everyone their fair chance to pick it apart.
          From Scott

          Comment


          • This is a response in relation to Dr McIntyre's post on th 5th Jan.

            From one human being to another, I’m genuinely sorry if my comments bother you, but in all honesty, in some ways, - don’t take this personally, in the bigger picture of things, I couldn’t care less.
            But before you let your ego go and get upset, please hear me out.

            You’re probably upset that someone with very little actual technical knowledge or education can speak the way I do regarding scoliosis biomechanics. – That I can talk about it so candidly when I have no academic qualifications – only a grade 10 school certificate. I never went to college and I never went to university. I guess if I was to really try and hit the nail on the head, it would offend you that you being a person who spends hours and hours and hours looking at all this stuff to do with scoliosis and trying to make sense of it, that someone else who does absolutely none of that thinks they know better. I can see how this might offend you and how my quick short comments may seem thoughtless and offend you as well. If I’ve offended you please understand that it is unintentional.
            QUOTE>>You haven't even read the current studies to know what the scoliosis researchers are or are not doing.<<
            You are exactly right, and I get you’re point - I haven’t read the current studies…
            - but this is a part of me that gets really cocky – You actually said- to quote ‘You haven't even read the current studies to know what they are or are not doing’
            This is another of my areas of logic and I know it’s a short minded given the situation –
            I don’t need to know what they are doing, because I already know what they are not doing.
            They aren’t doing the research that I tried to give to them years ago, which I know is right and I could say that’s it. Final.
            But I can see I’m going to have to do better than that.
            And just the fact that you’re here a part of this patient forum means you deserve more.
            I got enough out of their old studies I read years ago to know they can’t get the data they need to make heads or tails of scoliosis biomechanics for starters and to be honest with you I’m not even sure they would know what to do with this data if they had it. I’m not sure they would be able to make sense of it. Firstly I could bring up the fact of loss of water content in intervertebral discs in cadavers, meaning you can only get smaller bits of info and nothing really useful when it comes to understanding the whole vicious cycle of loading in living patients. Or that marker based motion capture yields no info that I’m aware of then I could bring up the chicken and egg problem you guys have in trying to separate factors that relate to growth. We could talk about maybe EMG – but you can’t test all the muscles all at once, and you can’t create a product that someone would wear that would do such a thing without that thing itself placing a weight on the spine and affecting results. But most of all, if they could have done anything more already, they’d have done it already, I will give them that credit.
            Without any disrespect, apart from the improvements in 3d X-rays and such you guys don’t have much of a chance of even seeing the things you need to see in their own right, unhindered by other factors let alone going one step forward and actually making sense of it. (That is of course you’re willing to let someone live inside one of these 3d x-ray machines and be exposed to permanent radiation for 3mths or more... that is if you can understand and separate the factors that relate to growth) I know that’s harsh and I am sorry, but it’s going to get worse.
            So really I'm sorry and apologise when I said 'give me just a tiny bit of credit for having a crack at that which even the scoliosis researchers are scared of' as it may not be correct, (but with the focus turning to DNA I have to wonder)
            I should have said 'give me just a tiny bit of credit for having a crack at that which even the scoliosis researchers CANNOT DO.
            This is why I can be smart and simply say I could leave for another 7 or 8yrs come back and still nothing would have changed… exactly like the last 7/8yrs.
            I know you guys give your all to trying to work out how scoliosis works, (I know you put so much into it and my comments seem creul) but let’s face it you guys as specialists in your field aren’t the same as say people who specialise in building skyscrapers, or lawyers, or bankers. These people know just about everything in their fields where you guys, as specialists in your field, do not.
            Don’t be offended, that’s the name of the game – It’s just that I’m smart enough as a patient to understand - and even though it doesn’t sound like I mean this I genuinely want you to know that I’m grateful that people such as yourself who take on such a career that would benefit scoliosis patients. I truly am, and I’m even more grateful that you’re here. This forum needs you and more people like you. You doing a great thing being here, and I’m sorry if my attitude doesn’t reflect that.
            Quote>>If you want to claim you know what you're talking about, that's fine; and even post pictures to try and explain what you're saying, that's more than fine. That's encouraged even. <<
            Thankyou, I appreciate you being open to allowing me to share my ideas, I’m not completely sure if others on the forum would agree. I feel like I don’t even have the right to talk about it on here, with the way some people are about different ideas.
            Quote>>You've clearly thought about it a lot and you might have some interesting thoughts.<<
            Thank you for that, I haven’t thought about it that much for years, that’s why it’s hard to remember everything – (I never had to think about it like you have to think about it – that’s the part no-one gets – the answers were presented to me as clear as day.)
            Interesting thoughts…ok, let me ask you a question –
            How far do you really want to go?
            How far are you willing to go to find out about scoliosis??
            I know the answers, if you want them, you can have them, no-problem – I’ll give them to you.
            I didn’t want to drag up all my research ideas and write a document, but now it’s mostly done, so it doesn't matter.
            Continued on next post...

            -Scott
            Last edited by sjmcphee; 01-11-2012, 02:11 PM.

            Comment


            • Quote>>But you should really refrain from trash talking. If you want respect, you need to give respect.<<

              I certainly understand that concept and maybe I should explain a little bit of my abrasiveness, my shortness or my disrespect.
              You’re soon to have a detailed record of my scoliosis story and research concepts…
              And so, let me tell you a few little stories about giving and getting respect - the two way street.
              About 6 or 12mths after I had the injury and had been diagnosed with scoliosis I decided I may as well take a trip to the library to find out what the hell scoliosis was.
              I already knew there was a vicious cycle of loading and had spent all the time since the injury slowly making sense of it.
              Anyhow off I went. After reading the 3 or so books that were there that gave little more information than the big word ‘Idiopathic’ (which I hate incidentally) I realised then and there that I knew that in which no-one else knew. Right from the very first day I picked up the first piece of scoliosis literature.
              Respect – I didn’t get much respect a few weeks later when I went to see a specialist and was virtually laughed out of his office for suggesting that I knew how scoliosis worked, mind you he still took my $70 for the 20minute consultation.
              AHOLE. I had a bit of a bad attitude, and still do I guess.

              Or maybe when I see a hospital specialist who stuck my 11 -12 degree curve up on the xray box and said that I didn't have scoliosis.
              I stood there right in front of my own xray pointing at it clearly seeing it wasn't straight.
              Nope -you dont have scoliosis. I walked out of there thinking I had a mental problem because he said I did not have scoliosis.

              Or maybe the best part of the last 12 yrs where the general concensus was that my curve was stable (because of the 5degree threshold) and not progressing. Even though I knew it was.
              Or maybe that this all started because of a work injury that I could not get compensation for because you researchers don't believe it can happen?

              My motivation to complete the task left no room for grey area.
              I decided that anyone who wasn’t part of the solution was therefore by default part of the problem.
              That the end justified the means.
              It was simply Black and White.

              Some might agree with this attitude, others may not.
              Respect… I remember in 2003, when the SRS issued ‘A call for action’ if I remember correctly – which I answered – (It was posted on NSF forum as well and I posted on here as well.) I probably pushed it too far with the executive director of the SRS Tressa Goulding though, who when I pushed the point in saying I knew how scoliosis worked said - We are contacted from time to time from many patients who have scoliosis research ideas….. and that your research is no better than that of another scoliosis patient who suggested the cause of scoliosis is sitting on the toilet in the morning. Now if the Executive Director of the SRS said that to me, then technically I don’t have any obligation to show any respect to any member of the SRS if that’s what her comments as executive director of your organisation stand for, and since she keeps her job every year while all other scoliosis directors have a one year tenure, she may as well be the boss.
              But not that I didn’t speak via email to at least 3 acting SRS chairman and a couple of acting research directors as well. They mostly treated me with a lot more respect than she did, but still nothing ever eventuated – it was never going to if email was all I had to describe 3d ideas.
              I’ve got every right to take my knowledge and use it to ridicule the efforts of scoliosis researchers given the way the executive director herself blatantly discredited my ideas without investigating them.
              Then I could talk about the leaders and moderators of certain patient support groups who ignore my efforts and take a step away for fear they could get dragged into something that might discredit them – Who just stand there like a deer in the middle of the road staring at headlights.
              Not even members of scoliosis forums supported my efforts in the past. They are too quick to find ways to discredit you based on things they think they know… and I’m not talking about now… so much, but rather 8/9yrs ago. The worst part about it they are the ones who stand to benefit from what I did and even they aren’t on my side.
              There ain’t no romanticism. None and no-one to support me or what I did.
              And what if I am right about what I know about scoliosis biomechanics? Then that makes me someone who knows, and everybody else is someone that doesn’t know. I’ve been waiting 12yrs for one of you so called experts to prove my ideas wrong. Maybe you could ask Tressa Goulding to explain to all the patients why my ideas were ignored and why so many years were wasted as a result and why people had to suffer for needlessly when new information had already been put on the table? Certain other people should probably be there as well standing beside her.
              Sometimes there’s more to things than meets the eye.
              And what happens when I do make my research ideas public knowledge and someone actually gets it??
              You and 3 of your mates team up and make a company that makes 100million a year off patents relating to what I did and then what do I and the other patients get except the right to pay exorbitantly for some knowledge that we patients created and not you guys?
              Put it this way – A plaque or award presented by the executive director of the SRS won’t cut it. - Not for me.
              I swear right now I’ll break it in half and throw it in the bin before I leave the podium if that’s all my efforts amount to if some member of the SRS gets rich off it.
              Now you know where my bad attitude comes from.
              I’m sorry, but the SRS crapped on me first.
              Then you say if I want respect then I really need to give it.
              (That’s another chicken and egg thing itself. I’ll never get the respect until the jobs done, and at that time I won’t need anyone’s respect. Derrr)
              I don’t want respect.
              I just want the SRS to start investigating the research I first put to them 10yrs ago, and until then they don’t deserve much more than my scorn and ridicule, and they should be grateful that I haven’t dished it out, considering I own about 15 scoliosis sites with which I could. - I could, but I'm not going to.
              How do know that I want respect?
              Even if I did show you exactly how scoliosis biomechanics works, does that fix my scoliosis?? NO.
              You're assuming that I think there's something in it for me to be gained, but there's not.
              I have a 19 degree curve, its progressing at less than a degree a year and I'm 38years old.
              It's not for me, it's for them, and those that have yet to be born into this nightmare.
              You’re assuming I want to prove my research, which I’m not really prepared to do right now.
              Not on my own.
              Not unless its easy and I can do it for fun.
              I’ll do so when I have a spare million dollars to pay experts to do it the way it needs to be done, till then I’m not gonna push crap uphill.
              And if I never have a spare million dollars then it won’t happen. Not from me.
              The document I give you in a few days might be all you ever get.
              The SRS should have paid more attention to what I was saying before my spine started to rotate.
              I’m not able to make sense of loading of the curve pattern at a given point in time like I used to. Simple as that, the opportunity being what it was, was mostly lost.
              It just depends on whether or not there’s enough in this document…
              I think there might be, but it’s could go either way, I'm not sure you guys are going to be able to make good sense of it.
              Gimme a day or two to finish a couple pages and go over it.

              - Scott
              Last edited by sjmcphee; 01-11-2012, 02:25 PM.

              Comment


              • Hi Tamztom,
                Thanks so much for adding this earlier link.
                I started to take a look at it but havent read it all.
                QUOTE>>The tri-dimensional nature of scoliosis was identified in the 19th century. John Shaw recognized it in 1824, and clearly demonstrated that the apex of the deformity is lordotic, with the anterior column longer than the posterior column. In
                1865, Adams also described the presence of lordosis in the thoracic apical region. With the arrival of radiology in 1895, the anatomical observations made by Shaw and Adams were quickly forgotten. The projections of the skeleton
                produced by X-rays were so attractive for doctors, surgeons, etc. that their thoughts were concentrated only on what was projected, the anteroposterior view, and rarely the sagittal view. As a result of this unidimensional approach, errors occurred in the use of instrumentation systems of the spine, creating the lumbar flat back syndrome, for example. This occurred throughout the world, in spite of the efforts made by Roaf and Somerville in their persistent description of the 3D nature of the scoliotic deformity. Dickson has recently underlined these findings of his British colleagues. In France, Rene Perdriolle was a pioneer in promoting the reality of the tri-dimensional nature of the deformity”. During the second
                half of the twentieth century, a series of orthoses were developed within this one-dimensional, or two dimensional maximum, context by people who at least considered rotation. These braces are still used as standard scoliosis treatment in some countries, even though many of these brace concepts were later related to the thoracic and lumbar flat back syndrome [4-9]. Scoliotic deformity can be described as a ’series of vertebral segments placed in extension, or lordosis, which deflect and axially rotate towards the same side’ (Dubousset 1992). According to Dubousset, rather than a succession of lateral deviations, idiopathic scoliosis represents the combination of torsional regions joined by junctional zones.

                I really like this document you guys are going to have to send more + and I'm actually going to have to read them. (damn) - whats this about 2 types of torsion?
                Lordosis in Thoracic see - just what I said.
                Lateral deviations, Regions, Junctions - You wanna know how it works?
                I've already done all of it.

                Comment


                • Originally posted by sjmcphee View Post
                  This is a response in relation to Dr McIntyre's post on th 5th Jan.
                  ...
                  Originally posted by sjmcphee View Post
                  ...
                  http://i.imgur.com/kpTtT.gif

                  I'll respond to a couple of specific things shortly.

                  Comment


                  • Originally posted by sjmcphee View Post
                    Respect… *snip* I probably pushed it too far with the executive director of the SRS Tressa Goulding though, who when I pushed the point in saying I knew how scoliosis worked said - We are contacted from time to time from many patients who have scoliosis research ideas….. and that your research is no better than that of another scoliosis patient who suggested the cause of scoliosis is sitting on the toilet in the morning. Now if the Executive Director of the SRS said that to me, then technically I don’t have any obligation to show any respect to any member of the SRS if that’s what her comments as executive director of your organisation stand for, and since she keeps her job every year while all other scoliosis directors have a one year tenure, she may as well be the boss.
                    First, do you understand her point at all? The SRS clearly gets contacted by many patients claiming they know how scoliosis works. How would you suggest she should have proceeded with whatever it was that you sent her?

                    Second, she’s the “Executive Director” of the office at SRS. Not the Board of Directors. Big difference here. My mom has a similar type of job at a mid-sized company. She runs the office, i.e. hiring, firing, bookkeeping, payroll, etc… Undeniably an extremely important job. That she stays on year after year probably indicates that she is an employee of the SRS as opposed to any dictatorial powers and perhaps shows that she’s good at what she does.

                    Originally posted by sjmcphee View Post
                    But not that I didn’t speak via email to at least 3 acting SRS chairman and a couple of acting research directors as well. They mostly treated me with a lot more respect than she did, but still nothing ever eventuated – it was never going to if email was all I had to describe 3d ideas.
                    Ok, at least here you’re contacting the right people. But again, what would you have them do? Seriously. What would you have them do? Give you a research grant to study your hypothesis? Or were/are your thoughts written down so well that you can actually make a suggestion as to how to move forward in scoliosis care? Should the McPhee hypothesis for scoliosis etiology be taught in medical school despite it being completely untested or described? I’d suggest that, first, you had unrealistic expectations for how they would receive your assertions; And second, to use a quote from a scientist in an extremely confusing field – physics, “If you can’t explain it simply, you don’t understand it well enough” – A. Einstein.

                    Originally posted by sjmcphee View Post
                    I just want the SRS to start investigating the research I first put to them 10yrs ago, and until then they don’t deserve much more than my scorn and ridicule, and they should be grateful that I haven’t dished it out, considering I own about 15 scoliosis sites with which I could. - I could, but I'm not going to.
                    If that’s what you want, I’m not sure you’re going about it correctly.

                    Originally posted by sjmcphee View Post
                    You’re assuming I want to prove my research, which I’m not really prepared to do right now.
                    That’s not an assumption I’m making. I’m not sure what you want to do with your ‘research’. I do know, however, that if you want a biomechanist to listen to your ideas and take them seriously, you’re going to need to be able to show that you have a working knowledge of the current literature and how your ‘research’ fits in or contradicts. But that doesn't seem to be anything you're interested in doing. Alternatively, you could try a little humility. You like to say you have all the answers and that nobody else does. Any push back/challenge you receive you claim you're being attacked. This is the way science works. You claim something, show your evidence, then people get to confirm or refute your evidence. Some people may see your point and others won't.

                    Comment


                    • Hi Dr McIntyre,
                      Thanks for your reply.
                      Yeah I did understand her point but she still discarded me as some crazy person and I didn’t like it.
                      I have no doubt that she’s good at her job, just not when it came to the situation I presented.
                      I just didn’t like what she said and that she discarded my research ideas.
                      The toilet comment was what really peeved me off - an insult to me as a patient (she might have said all us patients are idiots) and an insult to my research ideas.
                      But like I previously admitted I probably did push the point too far and most of all after all this time it doesn’t matter anymore anyway.

                      Do you understand that for me – as a mild / moderate scoliosis patient that for all the people that would take money from me there’s no research so far that actually amounts to anything that benefits me whatsoever?
                      And that for all researchers know I have to wonder if they’re any closer to really understanding how scoliosis works than those guys from back in 1895 in that other post?

                      When I did contact the right people who then put me in touch with the other right people they certainly did take the time to listen and hear me out.
                      I’m not going to say who the particular researcher was, not publicly anyway, but I will say he certainly gave a fair amount of time looking into what I was saying. I can’t say that he didn’t.
                      The reason why and where I failed was mostly:
                      1/ fundamental difficulties of trying to define 3d scoliosis ideas in 2 dimensions and email and not being there in person to show some specific things going on in the curve pattern,
                      2/ my own shortcomings when it came to correct terminology or explaining things in an easy to understand manner despite the problem described in item 1.
                      It was a situation where the harder I tried the more stupid I looked.

                      QUOTE>>But again, what would you have them do? Seriously. What would you have them do? Give you a research grant to study your hypothesis? Or were/are your thoughts written down so well that you can actually make a suggestion as to how to move forward in scoliosis care? Should the McPhee hypothesis for scoliosis etiology be taught in medical school despite it being completely untested or described? I’d suggest that, first, you had unrealistic expectations for how they would receive your assertions; And second, to use a quote from a scientist in an extremely confusing field – physics, “If you can’t explain it simply, you don’t understand it well enough” – A. Einstein.<<

                      Well, I didn’t come from an academic family, and I finished school in grade 10 (and I spent more time playing up than paying attention), so any sort of knowledge about how the correct way to go about things in these kinds of technical areas at the professional level was certainly a new thing for me. I really had no idea at all how research was conducted, and who conducted it. I’d certainly agree with you I did have unrealistic expectations, and also add that I really didn’t know how to go about it the right way, but in the absence of knowing any other way I tried my best. I didn’t want any money or a research grant or a handout. I would have happily tipped my own money into it had there been a clear path forward. A lot of my thoughts/ideas were written down but honestly in 2003, I think whatever I wrote mostly seemed difficult to understand, nobody would have ever have made sense of it, and it certainly wasn’t the type of thing that could ever be printed, in any form. Most of all though, back then in the course of my progression that I was trying to explain, torsion hadn’t even entered the curve pattern nor had spinal rotation whereas now I can place them in as well, only I can’t make sense of the loading anymore like I used to, but there are good reasons for this and I will explain more in my presentation.
                      McPhee hypothesis for scoliosis etiology – lol sounds formal doesn’t it…
                      Maybe it should, but that’s not what I wanted. I’ve never sought any fame or career from this.
                      I’ve never had any aspirations to have any formal interest in scoliosis biomechanics – truly.
                      I considered taking a course in mechanical engineering and spine/scoliosis related study, but after thinking upon it realized it wasn’t what I wanted to do. My situation is that I saw/felt the structural misalignment take place from a specific motion and set of forces I placed on my body, and an altered system of biomechanics began to work as a vicious cycle, I eventually looked up the literature, realised that what I was seeing/feeling was exactly the missing piece that researchers needed to understand this condition, my spine also having no factors relating to growth and in the most humble way possible just wanted to share what I knew.
                      Like me at the supermarket, get in and get out.
                      Ideally just as many scoliosis patients are prepared to go along with some out-there ideas in the hope of fixing their scoliosis I will admit that my first and only motivation in the beginning was I wanted to find a way to manually reverse the cycle of loading taking place, in order to reverse the progression back to the original misalignment and realign it.
                      I cared not for anything else.
                      Being that I felt I knew something important and that I had an obligation to share it whilst having no way to do so drove me crazy. In the absense of anyone else taking an interest I felt like I had to do it all myself. I never wanted to. That the knowledge could not be afforded to be lost since there is no way for you guys to even get the data to get to this knowledge.
                      As for Albert Einstein, he’s right, but I’m not sure he never tried making sense of this…
                      This is never the way I wanted to go about my research.
                      What I wanted, was to create a Spine Buckling model for my right thoracolumbar curve pattern that incorporated coupling and was based on my geometry type methods. There is no need to gather any data, because all the data would be calculated from within the model itself. I would have used the methods refined in creating the first model, to transfer the same scoliosis biomechanics rules to other curve patterns and then we would have models of all the curve patterns. Then you would start to add secondary factors into the models, such as factors relating to growth and finally congenital abnormalities.
                      I wanted to put my ideas into a correct model so that everything would be placed in the right context 3d not 2d, (because I fundamentally have to do so in order to put the underlying vectors in the right context in relation to the flexion/extension and lateral flexion that’s messed up in the system.)- and I just never got the chance to take what I was doing that far. And I’m still pee’d off that I failed – that’s the bottom line. With how well I was actually once able to feel and see exactly what was going inside my curve pattern I thought that there was no chance I could fail.
                      My research, well I don’t know what I want to do.
                      I really don’t care that much anymore, but I still believe in it.
                      I never even really planned so much for any of the ‘application of’ my ideas, since I know that the laws of physics are nobody’s property.
                      I was only ever mainly interested in the core understanding of this vicious cycle.

                      What you can expect from my presentation is this.
                       A particular motion that led to a structural misalignment;
                       Location and info about that misalignment;
                       The amount of junctions and location of them;
                       The loading on those junctions
                       Underlying vectors that control the curve pattern
                       Define Loading components
                       Define Progression from point of inception to –
                       Becoming equally loaded throughout the curve pattern
                       To torsion entering the curve pattern
                       To Spinal Rotation
                       Hypothesis for Curve Patterns

                      I tell you this now, but at the same time I want you to know don’t expect me to show you where every translation came from and went to. To do that would have required the 3d model.
                      This (in my opinion) represents the rules of my curve pattern, maybe not all of them and not fully defined anywhere near as much as I’d have liked, but the rules nonetheless and in my opinion a better overall view than what you guys currently have.
                      I have no plans for the future of this document or research at this time.
                      I’m not really convinced that I truly can add much more to this other than some ideas here and there any more than what the document itself stands for.
                      There's a hell of a lot more smaller bits of info I learned at the time that got me to here, but I'm not sure I'll ever be able remember everything.
                      In fact it's extremely likely I wont.
                      There’s far more better experienced people to try and work this research out than me.
                      The card I had up my sleeve what got me here was my ability to make sense of the loading at a given point in time and at a much deeper level which as I’ve said before I cannot do anymore.

                      Sorry I’ve been harsh on you Dr. McIntyre.
                      I truly am, it’s nothing personal.
                      It’s just my way I guess of clearing the garbage off the table before we begin.
                      I am grateful for the benefit you bring to this forum and the people that are a part of it.
                      Please don’t ever hold them to blame for anything I do.
                      I will make an effort to be much more respectful from now on.
                      - Scott
                      Last edited by sjmcphee; 01-13-2012, 01:01 PM.

                      Comment


                      • Scott,

                        I know this isn't my discussion, but I've been reading it. Honestly, I have NO problem with someone who only has a 10th grade education coming up with great ideas. I think that is your own insecurity. There have been plenty of geniuses that haven't had formal schooling, so to me that is a moot point.

                        What I am concerned about is the fact that you are convinced that you have ALL of the answers pertaining to scoliosis and its cause. Even IF you are correct in your hypothesis, that doesn't help anyone to fix the problem once it's started. Also, a hypothesis (a research idea) is not fact, as you convey it, until you can PROVE it with a large study. It's great that you are delving into this, but as you have experienced, you are running with the "big dogs" here.

                        Another concern is that if you read through your posts, you actually contradict yourself, which sadly discredits you. We all tend to do that if we randomly put down our thoughts during an emotional outpouring. But as a researcher, you can not do this if you want to be taken seriously.

                        As it stands, your ideas seem very plausible. But you have to remember that not every scoliosis is the same. Not every scoliosis has the same cause. So even if you are correct in your thinking, you are only correct for a limited number of individuals. I totally agree that if you can help this subgroup of scoliotics, then you have accomplished a great deal. But honestly, it's hard to believe that EVERY case of scoliosis is caused by an injury. There is ample evidence that the turn to genetics is well founded. It HAS been shown to run in families, indicating at least a genetic predisposition to the disease. That's why the researchers are so focused on the DNA. Scoliscore does work for many people as a tool to determine progression or not.

                        I do appreciate how you outlined what is in your presentation, and thank you for your willingness to share this information with us. Like I said, it's very plausible. But tell us, if the researchers do decide to follow your line of logic, where will it end up? What new therapy can be derived from knowing this? We are talking about very delicate and complex structures here. If it were as easy as stacking blocks (and I'm not implying that you are being that simplistic), it would be easy enough to just straighten them up to create an even load. But that's not an easy task as the spine is NOT an independent structure.

                        I hope I'm not offending you, as you said, "It's the name of the game." I just want you to know that these are some of the reasons why you may have been brushed off. Researchers have to prove that their research will lead to something. Definitely understanding etiology is important. But if you are right, I feel that we may all be hopelessly stuck with the current options of bracing and surgery.

                        With that said, I am still eagerly awaiting your presentation. Maybe someone WILL see it and investigate it.
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • Originally posted by TAMZTOM View Post
                          Yes, balances and, importantly, removes distorting pull from everything downwards of the pelvis.
                          Tamzin, seated on floor, knees to the floor, has ZERO T and ZERO L rotation; standing, she is circa. 10 degrees.
                          Ergo
                          Pelvis and lower ligaments, bone, muscles and tendons are mightily involved in thoracic rotation and curvature.

                          Hamstrings are definitely tighter than desired. Re. the knee ligament contribution TOSCOLIOSIS isn't sure about, I'll try to find the link to the research paper suggesting relevance.
                          Tom,
                          This is an interesting point you make here. Many scoliotics have very loose joints, including me (can put my feet behing my head). But I would be curious to know how many have the tight hamstrings. I have very tight hamstrings and no matter how hard I have tried to stretch them out, it has ALWAYS been to no avail. I've never been able to even stretch them enough to sit on the floor with my legs staight out in front of me without tilting my pelvis back. I have to compensate with the flexibility I have in my lower spine. If ever I were to be fused to the sacrum, I would never be able to sit with my legs out in front of me and keep them straight. If you find something on this, I would also be interested in reading it. It seems we are learning more and more from your little girl every day!

                          Thanks,
                          Rohrer01
                          Last edited by rohrer01; 01-13-2012, 11:42 PM. Reason: major typo
                          Be happy!
                          We don't know what tomorrow brings,
                          but we are alive today!

                          Comment


                          • Originally posted by rohrer01 View Post
                            Many scoliotics have very loose joints, including me (can put my feet behing my head). I have very tight hamstrings and no matter how hard I have tried to stretch them out, it has ALWAYS been to no avail. I've never been able to even stretch them enough to sit on the floor with my legs staight out in front of me without tilting my pelvis back. I have to compensate with the flexibility I have in my lower spine. If you find something on this, I would also be interested in reading it. It seems we are learning more and more from your little girl every day!
                            Hi Rohrer
                            Excellent description, thanks. Live "tester animals (humans)" can help achieve answers. 3sisters and Erin also afford interesting comparison (ballet stretching difference). We will devise a progressive routine specifically on this area. I'll PM you and clue you in more as we organise.

                            Live flitting thoughts:
                            • Tamzin has 8 - 3 degrees lumbar rotation;
                            • when sitting, legs in front, Tamzin can't put head to toes (just manages to touch toes with fingers);
                            • when sitting, knees to the floor, Tamzin can get head to toes easily, 3 - zero degrees rotation;
                            • knees to floor removes only (it seems to me) the contribution from hamstrings;
                            • when standing, those tight hamstrings pull on the gluts, pelvis, psoas, affect various ligaments, all this AT LEAST contributing to distorting/rotating/curving force/pressure on the LC and, therefore, TC.
                            • We must FIX those pesky hamstrings, Rohrer!



                            Tom
                            07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
                            11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
                            05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
                            12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
                            05/13: (12yrs) <25, >22cms height, puberty a year ago

                            Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

                            Comment


                            • Hi Rohrer,
                              No you’ve not offended me. I enjoy jour comments.
                              I’ve got to be able to take it, if I give it, right?
                              Right now I’m probably due for something… lol
                              I’m sorry if I’ve said things that contradict myself.
                              You are right about, things do get a little complicated when you let passion and emotion in - which as Pooka will tell us is the reason why patients should not be doing this stuff.
                              I’m not going to go back and read my posts to see what I said… all I can say is that if I have contradicted myself regarding what to do about my research then I admit that I don’t really know know to do, and for me the whole research thing - it’s not really a constructive thing for me anymore, I got to a point within myself that there was nothing more to be gained with it only the sad fact that I never got to share what I learned. If I’ve contradicted myself regarding the research itself, it’s probably more of a case that I haven’t clarified or explained myself properly.
                              Sometimes I might seem to come across the wrong way… like I’m making out these are all the answers and I’m not showing respect for the DNA and hereditary aspects of scoliosis. This isn’t the case. I definitely do respect these facts and I’d be a fool not to.
                              For me in trying to make sense – I placed all of these… DNA, leg length discrepancy etc. areas of interest into a separate category named ‘Underlying Influences’ to separate these things from the core concept of the ‘Vicious Cycle of Loading’ itself, as well as another category ‘Factors related to Growth’. For what it’s worth I pay no interest in these other areas… that’s not the part I was playing to investigate these things, you really need to get the vicious cycle of loading part right first before you can look at how factors related to growth affect it.
                              I know that what I’ve been saying may not be all the answers but in the bigger picture of things, if (for example) we currently, know 33% of everything about scoliosis and the biomechanics knowledge was to (hypothetically) improve our knowledge to 66% then we start to get critical mass over the problem and the concept being that it should not be as hard to figure out the rest of the unknowns. That’s just my way of looking at it.
                              My presentation is mostly done, I just have to explain a couple things a little better and fix a few images… It’s nothing that’s going to blow your mind or anything, just lines and stuff… I’m not a researcher you know just a scoliosis patient. If you PM me your email I can send you a copy if you want, and anyone else as well. It’s only on PowerPoint though. My adobe CS5 trial ran out again and I can’t transfer the file to acrobat and .pdf format. I tried some online converters a few days back but it lost some of the formatting and images didn’t always display.
                              Just so you all know I haven’t spent day and night on it. Mostly I’m addicted to xbox lately…
                              But it still is what I’m saying it is, but I’m just not that sure if anyone will really understand what I mean. And if you do get what I mean, you’ll know that to truly figure it out it needs to be put in the right context – a proper 3d model that takes normal spinal biomechanics into account.
                              -Scott

                              Comment


                              • Originally posted by TAMZTOM View Post
                                Hi Rohrer
                                Excellent description, thanks. Live "tester animals (humans)" can help achieve answers. 3sisters and Erin also afford interesting comparison (ballet stretching difference). We will devise a progressive routine specifically on this area. I'll PM you and clue you in more as we organise.

                                Live flitting thoughts:
                                • Tamzin has 8 - 3 degrees lumbar rotation;
                                • when sitting, legs in front, Tamzin can't put head to toes (just manages to touch toes with fingers);
                                • when sitting, knees to the floor, Tamzin can get head to toes easily, 3 - zero degrees rotation;
                                • knees to floor removes only (it seems to me) the contribution from hamstrings;
                                • when standing, those tight hamstrings pull on the gluts, pelvis, psoas, affect various ligaments, all this AT LEAST contributing to distorting/rotating/curving force/pressure on the LC and, therefore, TC.
                                • We must FIX those pesky hamstrings, Rohrer!


                                Tom
                                Tom,
                                If you can find a way to effectively stretch the hamstrings, let me know! I know all of the usual stretches, but they don't seem to work for me no matter how consistent I am with doing them. It just never gets better. I used to teach aerobics, so was very in shape at that time. The hamstring issue was just as bad back then. I did a lot of weight training and stretches. The thing that I found to help with the pain of my scoliosis was, believe it or not, the Roman chair. I think that's what it's called. It's where you lift your torso while your hips and ankles are locked in place by bars. I've heard that this is very bad for hypokyphosis, which I have very badly (only 6* curve where there should be over 20*). I didn't know anything about hypokyphosis at the time. I just know that this exercise relieved pain over a period of time as my muscles were strengthened. I don't know if the hamstring issue is part of the overall problem, but it seems to be related somehow. One thing I never have tried (this just popped into my head), is applying heat to the backs of my legs while stretching. Maybe I'll try that for a couple of months and see if any progress is made. I'll let you know. But, like Tamzin, I can barely touch my toes. I CAN touch them, but it is painful to do so and always has been. Let me know of anything that works with her. But remember, I'm 43 and she's, what, 11 years old? There's a huge difference in how the body responds between kids and middle-aged adults.
                                Be happy!
                                We don't know what tomorrow brings,
                                but we are alive today!

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