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Thread: My Adult Scoliosis Story

  1. #31
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    As of 2011, the Woggoni were selling the chair for $3,795.

    https://www.clear-institute.org/Foru...c/Default.aspx

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

  2. #32
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    Quote Originally Posted by Kevin_Mc View Post
    Anyway, interesting developments for sure. I only wish hundreds of patients hadn't been misled, possibly made worse and money wasted.
    So glad you are back, Dr. McIntire. Hope you have been well.

    I just wanted to ask a little question about your comment about the chair possibly making things worse. How likely is it that ANYTHING a kid does for a 1/2 hour a day, twice a day, will affect the curvature trajectory? I mean when we have some kids faithfully wearing their braces 23/7 for years and still needing surgery, I seriously doubt the chair ever made someone surgical who wasn't destined to be so even if the rotation was worse for those two half hours.
    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. #33
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    Quote Originally Posted by Pooka1 View Post
    So glad you are back, Dr. McIntire. Hope you have been well.
    Been well enough :> Job market is tough. They shuttered GSK R&D. Academia wants you to come with an RO1 and teach eleventy hours/semester and industry wants you to have industry experience and to have your best friend in charge of hiring. So my new job is being a home technician and professional Daddy. Turns out, I'm pretty good at both!

    Quote Originally Posted by Pooka1 View Post
    I just wanted to ask a little question about your comment about the chair possibly making things worse. How likely is it that ANYTHING a kid does for a 1/2 hour a day, twice a day, will affect the curvature trajectory? I mean when we have some kids faithfully wearing their braces 23/7 for years and still needing surgery, I seriously doubt the chair ever made someone surgical who wasn't destined to be so even if the rotation was worse for those two half hours.
    The same question was leveled at our work by H. Weiss. And it's a good point. Our response to him was based on muscle physiology. The idea behind therapy is to change the soft tissue structures so that they stabilize/function better. (This of course assumes that the main driver of the curve isn't something like vertebral overgrowth and is more biomechanical in nature). Exercising a muscle 3/week will make it stronger and more functional regardless of how effective it may or may not be on the curve trajectory.

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

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

  4. #34
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    Quote Originally Posted by Kevin_Mc View Post
    Been well enough :> Job market is tough. They shuttered GSK R&D. Academia wants you to come with an RO1 and teach eleventy hours/semester and industry wants you to have industry experience and to have your best friend in charge of hiring. So my new job is being a home technician and professional Daddy. Turns out, I'm pretty good at both!
    Yes I am getting the vibe that it is much harder than it used to be. My twins are biology majors and one wants to go into research. I have to wonder how many jobs will be available when she gets out. Have you considered anything in the Federal Government?

    The same question was leveled at our work by H. Weiss. And it's a good point. Our response to him was based on muscle physiology. The idea behind therapy is to change the soft tissue structures so that they stabilize/function better. (This of course assumes that the main driver of the curve isn't something like vertebral overgrowth and is more biomechanical in nature). Exercising a muscle 3/week will make it stronger and more functional regardless of how effective it may or may not be on the curve trajectory.
    Yes I think the idea behind PT and bracing are sort of opposite in this regard. Bracing is trying to overcome abnormal bone growth even at the expense of muscle strength. PT is trying to overcome abnormal bone growth through building up of surrounding muscle.

    With the chair I can only see it negatively impacting the curve through increasing range of motion through ligament laxity, i.e. making it less stable. If you were to stretch the hamstrings of one leg, and not the other, for a 1/2 hour 2x/day, you would notice a big difference in flexibility between the two legs in a couple of weeks. So I would expect to see something similar for something like the traction chair. Admittedly, I'm not sure how the chair works, but knowing a little bit about traction, it can definitely increase motion and would seem to have the potential to cause laxity, with a focus on the apex. If the muscles and other soft tissue structures have anything at all to do with curve stability (which I believe they do, regardless of progression risk) then reducing those structures' ability to maintain a rigid spine could definitely impact the curve.
    I have to wonder how much traction they really were applying versus playing at the idea of traction. I hope they were playing because they are lay people and shouldn't be messing with actual traction. There are straps that pull the curve in the opposite sense which I think were causing increased rotation for those short periods of time. I think b races may avoid this increased rotation through forcibly kyphosing the spine. The straps can't do that and so must have been increasing the rotation. But again, I seriously doubt it matters. Surgeons maintain that back packs and slouching and such do not cause or increase curves so how can this chair nonsense do it?

    I think you're correct though, that if a patient was destined for surgery, I'm not sure if the chair would necessarily make a difference. OR rather, if someone was NOT destined for surgery, I'm not sure if the chair would have pushed them over the edge. But I can hypothesize a physiologic mechanism that could increase the curve.
    If lax soft structures were in play, why don't all people who have this condition (hypermobility, etc.) get scoliosis? I realize that is a different question form people who have scoliosis who have soft tissue laxity may exacerbate their curve absent muscle building to offset the laxity. It just seems like a bunch of known and unknown unknowns.

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

    Most of the other people doing PT have dropped off the radar also.
    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. #35
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    Quote Originally Posted by Kevin_Mc View Post
    Hello!

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

  6. #36
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    Quote Originally Posted by Pooka1 View Post

    If lax soft structures were in play, why don't all people who have this condition (hypermobility, etc.) get scoliosis?
    I guess I only think soft structures are in play where progression is involved. I suppose I'm somewhat agnostic when it comes to the etiology. But I can see that hypermobility would very easily contribute to progression.

    Quote Originally Posted by Pooka1 View Post
    It just seems like a bunch of known and unknown unknowns.
    There's the understatement of the year!

  7. #37
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    Hey everyone,
    Sorry I've been gone for a little while..
    I can see that quite a few people have taken the time to add comments, I haven't looked at them yet.

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

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

    - Scott

  8. #38
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    Ok, firstly a quick note about my teeth.
    The orthodontist didn't seem opposed to my suggestion that the bad loading occurring at the cervical / thoracic junction and as part of the 'altered biomechanics' occurring from my scoliosis is having an effect on the loading of my jaw and as a result the slow slight buckling of my teeth.
    I started with "I know this is going to sound crazy..." but I didn't detect any disbelief or patronizing as I nervously laid it out.
    He even said "Everything in there is interconnected and what you are suggesting is not disbelievable", or something to that effect.
    Better than the response from my dentist a few years back who outright rejected the idea.

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

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

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

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

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

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

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

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

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

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

  9. #39
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    Scott, we had a lot of conversations and it is hard for me to remember them individually. You have a complete hypothesis of what is going on with your skeletal system that you figured out so I think that helps you.

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

  10. #40
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    Before getting into the scoliosis traction chair issue I want respond to the people who commented in regards to scoliosis websites.
    (I've always believed this topic was deserving of a forum thread of its own.)

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

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

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

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

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

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

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

    I felt that ultimately BY NOT DOING THESE THINGS, we're selling ourselves short; contributing to our own plight; making things needlessly harder for ourselves etc.. etc.. etc..
    Don't think about what we could gain by doing these things in the future, focus on what we are losing right now now each and every day because we haven't already done it.
    Last edited by sjmcphee; 01-13-2016 at 11:39 PM.

  11. #41
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    Quote Originally Posted by Pooka1 View Post
    Scott, we had a lot of conversations and it is hard for me to remember them individually.
    You have a complete hypothesis of what is going on with your skeletal system that you figured out so I think that helps you.
    I hope when you get the radiographs that you don't have any progression. How many years has it been?
    Hey Sharon,
    I know you deal with a lot of patients and their stories, its ok that you forget the details, I'm glad for your efforts and that you take the time to respond.
    Yes I know precisely whats going on with the biomechanics of my scoliosis, I have mostly since the injury originally occurred all those years ago, that's the thing that's always gotten me into trouble, ranting and raving about it.
    But ultimately I don't have any idea of whether what happened to me applies in any way to others, that's the 64 million dollar question, the curse of knowing too much.

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

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

  12. #42
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    Scott, if you understand your scoliosis, I would hope that would comfort you.

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

    Please consider this. You are not dependent on researchers if you have your own theory.
    Last edited by Pooka1; 01-14-2016 at 08:46 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  13. #43
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    Hey Sharon,
    I used to think that understanding how my scoliosis works gave me peace of mind, but I am starting to consider the opposite to be more the case.
    Having this 'knowledge' has been nothing but an unwanted burden, its given me nothing but grief and no end of trouble.
    It might've been better if I never paid such attention to what was going on within my spinal column and I remained ignorant.

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

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

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

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

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

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

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

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

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

  14. #44
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    Quote Originally Posted by sjmcphee View Post
    You talk about researchers concentrating on keeping people off operating tables; out of braces; out of the clutches of chiropractors and of finding effective non-surgical and non-brace treatments for people who need treatment.
    But I have to ask how they realistically hope to go about achieving any of these goals without an understanding of biomechanics if a problem does indeed exist there.
    Scott do you remember I posted many abstracts to articles on biomechanics? Did you read these articles? Maybe one, several, or most of them are saying what you are saying. Why do you think these researchers don't understand biomechanics? I don't think any of those guys are unrealistic.

    By the time the new millennium came, I already had a good handle on what was going on biomechanically, though my ability to explain it was terrible.
    Scott if you can't find a way to explain it rigorously and clearly, nobody should be expected to take it on faith that you have solved it. This is science and it is not enough to understand. If you want others to believe you understand you have to explain it in published, peer-reviewed articles. How will they know what you did if you don't write it down clearly for them to consider?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  15. #45
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    Yes I remember you did, and I did browse them over, though I don't think I found anything all that useful in those particular papers.
    I haven't forgotten that you did try to help though, and I'm thankful.
    Some of them if I recall are of some use, and provide some small leads... for example I think someone hypothesized about lordosis in kyphosis;
    And some are just good for gaining a better understanding even though they don't provide any actual value to me;
    I get the general feeling that even though they did a whole lot of the important legwork learning many things, they're looking at the problem at a far lower level of complexity than that I which prescribe to my understanding of the problem, and also I feel like I'm not going to find any answers amongst other peoples failures.

    Quote Originally Posted by Pooka1 View Post
    Scott if you can't find a way to explain it rigorously and clearly, nobody should be expected to take it on faith that you have solved it. This is science and it is not enough to understand. If you want others to believe you understand you have to explain it in published, peer-reviewed articles. How will they know what you did if you don't write it down clearly for them to consider?
    I understand where you're coming from, honestly I do, but there's some points that you should keep in mind.
    (And I don't want you to think I'm being argumentative, I want you to understand.)

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

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

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

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

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

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

    I've decided I'm going to post the story I wrote about my scoliosis website efforts and name those websites I built and the ones I didn't, as this is a part of my efforts and journey.
    I cant be sure that Linda won't delete my entire post as she has done before, so I'm going to firstly take down the scoliosis websites permanently so that she has no reason to complain.
    Last edited by sjmcphee; 01-16-2016 at 06:41 PM.

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