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Thread: My Adult Scoliosis Story

  1. #16
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    There are syndromes that affect the skeleton. Teeth issues could be just another symptom along with a spine curvature. One doesn't have to cause the other.

    As an example, my kids have some sort of connective tissue issue. They not only have a curved spine but also have ankles that collapse inward. The ankles did not cause the curve and the curve did not cause the ankles. They are both symptoms of the syndrome they have.

    The both needed braces but had different orthodontic issues (despite being identical twins).

    Biology/pathology is way more complex than we can even imagine.
    Last edited by Pooka1; 11-18-2015 at 07:48 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."

  2. #17
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    Some of the members here may be aware that I own some scoliosis websites and domains.
    I'm giving some thought as to what to do with these websites and domains in the long term.

    One thing that I really tried hard to do was increase the quality of scoliosis information on the internet.
    And there are numerous reasons as to why I wasn't all that successful.

    What I envisaged was having a a website where the majority of the information was on actual web pages.
    Informative videos, sophisticated imagery and animated presentations, etc.

    I'm giving some casual thought about whether or not to start a gofundme.com campaign to raise a large amount of money to do this properly once and for all, (maybe $20,000 target) and to hand over all my web assets to a scoliosis patient organisation such as this one.
    I like to finish the things I start and I hate losing.
    What do other people think about this idea?

    I've always thought that we are letting ourselves down by not having a more professional and informative web presence.

  3. #18
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    Quote Originally Posted by sjmcphee View Post
    Some of the members here may be aware that I own some scoliosis websites and domains.
    I'm giving some thought as to what to do with these websites and domains in the long term.

    One thing that I really tried hard to do was increase the quality of scoliosis information on the internet.
    And there are numerous reasons as to why I wasn't all that successful.

    What I envisaged was having a a website where the majority of the information was on actual web pages.
    Informative videos, sophisticated imagery and animated presentations, etc.

    I'm giving some casual thought about whether or not to start a gofundme.com campaign to raise a large amount of money to do this properly once and for all, (maybe $20,000 target) and to hand over all my web assets to a scoliosis patient organisation such as this one.
    I like to finish the things I start and I hate losing.
    What do other people think about this idea?

    I've always thought that we are letting ourselves down by not having a more professional and informative web presence.


    If you really want to create a comprehensive patient education products you'll need a lot more than $20,000. That amount is barely enough to just plan out all the contents you wrote about, let alone actually create the assets.

    Even if you succeed in developing assets, that is no guarantee any organization will use any of it. Generally, legal issues (Especially in the U.S.) will probably prevent supporting/using content that was not created by them or cannot be properly referenced according to the organization's guidelines. Each organization has their own set of rules and guidelines on how content can be created and sourced/referenced.

    So you can continue to develop educational material but I don't know if any organization will back you or use that content. Is it your goal to just share what you know or have an organization use your content?

    If you really want to do this, I'd guess your best bet is to develop your brand through social media and develop a following, not just blindly create content expecting people to find it.
    Last edited by green m&m; 11-19-2015 at 12:27 PM.
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  4. #19
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    Hi,

    I am not sure what you are trying to achieve.

    There are websites out there already and support groups on Facebook etc.

    The problem with social media is that there is no control. For example look at Scoliosis Warriors of Facebook- it looks like a support group but actually it is run by ScoliSmart a group of chiros who claim to be able to prevent and cure scoliosis. If you are allowed to join the group you will see lots of posts from Scolismart rubbishing fusion surgery and scaring people with out of context and outdated studies that suit their purpose while not providing any evidence of their own to support their own methods - if anyone like me challenges asking for research you get removed from membership. There are plenty of people on there who don't realise this- Scoiotic sufferers still post about surgery and get replies from fellow sufferers ( never Scolismart), but the replies are all subjective. Scolismart constantly post their rubbish and thus develop an audience of vulnerable people who might try anything ( provided they pay)


    One of the problems as I see it is with the definition of Scoliosis itself. Unfortunately it covers too broad a spectrum from very small curves that do not cause a problem to large surgical level curves that do. We are all lumped together on social media and so clear objective advice is difficult to find.

    I look to the official medical bodies to be more proactive e.g. SRS- they do have good definition about treatment paths but won't go as far as to jump in and demand excellence from outfits like Scolismart and create public debate which in the long run would protect scoliotics as well as help them.


    I have no problem with people trying new methods of treatment but I do object to people doing so without proper research and evidence while making sure they make loads of money at patients expense -

    I agree with you that we need informative websites but without clear guidance and a supported treatment path it is difficult to see how we are going to get it.

  5. #20
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    Burdle, nice post! I admire your reasoning on this stuff.

    You wrote:

    I look to the official medical bodies to be more proactive e.g. SRS- they do have good definition about treatment paths but won't go as far as to jump in and demand excellence from outfits like Scolismart and create public debate which in the long run would protect scoliotics as well as help them.
    I want to say that not only are SRS surgeons not demanding excellence from Clear/Scolismart Chiros but they allow themselves to be photographed in public with them. I don NOT understand it. It lends an air of respectability to chiro that is has not earned on the science front and the surgeons know it. One such surgeon is Br. Betz. One of our members her knows him very well and for many years. I wonder if she would ask him about this because it looks crazy.
    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. #21
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    Quote Originally Posted by Pooka1 View Post


    I want to say that not only are SRS surgeons not demanding excellence from Clear/Scolismart Chiros but they allow themselves to be photographed in public with them. I don NOT understand it. It lends an air of respectability to chiro that is has not earned on the science front and the surgeons know it. One such surgeon is Br. Betz. One of our members her knows him very well and for many years. I wonder if she would ask him about this because it looks crazy.
    Hi Pooka1,

    I am in the process of contacting Dr Betz on this matter - trouble is I cannot find an email address from him so I will write care of his hospital and hope he gets it. I am in UK so I don't hold out much hope in the way of a reply. I am astonished at the photograph and also the fact that Stitzel's posts on scolismart really rubbish fusion surgery but Dr Betz does fusion surgery not only for people for whom VBT is not an option but also on those for whom VBT has failed. This is never mentioned by Stitzel and I really wonder if Dr Betz realises this.

  7. #22
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    Quote Originally Posted by burdle View Post
    Hi Pooka1,

    I am in the process of contacting Dr Betz on this matter - trouble is I cannot find an email address from him so I will write care of his hospital and hope he gets it. I am in UK so I don't hold out much hope in the way of a reply. I am astonished at the photograph and also the fact that Stitzel's posts on scolismart really rubbish fusion surgery but Dr Betz does fusion surgery not only for people for whom VBT is not an option but also on those for whom VBT has failed. This is never mentioned by Stitzel and I really wonder if Dr Betz realises this.
    Yes exactly! I am perplexed by that photograph. Maybe the chiros didn't admit they were chiros??? Clear morphed into Scolismart because they were not accumulating evidence for efficacy and so just changed name as far as I can tell. Scolismart will morph into something else once it becomes obvious there is no evidence for efficacy.

    Maybe the people on this forum who are in contact with Dr. Betz will ask him. I wonder if he knows his picture is posted publicly with those particular chiros.
    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. #23
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    One of the reasons that Stitzel left CLEAR was because the Traction Chair that they used has disadvantages results on the rotation of certain thoracic curves- it made them worse!!!

    Stitzel posted on Scoliosis Warriors that he had demanded that CLEAR publish the results and that they threatened him with a lawsuit. It is all very odd and I think was just a gesture on his part. However on the website fix.scoliosis.com which is a CLEAR web site he is still posting etc.

    All very strange - this was his post about an interview he claimed he had with Fix.scoliosis (who are behind CLEAR) that he put on Scoliosis Warrior ( Facebook)


    Sitzel is the "I" below...

    There still seems to be some confusion over the clinical data on the STC which we published about a year ago. Here is an interview I did on the study that hopefully will clear (pun intended) things up.....

    FixScoliosis Interviews Dr. Clayton J. Stitzel about the Scoliosis Traction Chair

    Dr. Stitzel was one of the chief developers of the Scoliosis Traction Chair in 2004, was a lead instructor for the CLEAR Scoliosis Institute for 5 years, and served as one of the directors and board of advisors for over 10 years.

    FixScoliosis: What was your role in the initial development of the Scoliosis Traction Chair?

    Stitzel: The concept of a traction chair for the treatment of scoliosis is certainly not a new one. In fact, we reference a very similar concept from the 17th century in the research paper we recently published.

    The novelty of this was chair model was the adjustable arms, ratchet correction system, and the whole body vibration, which had never been incorporated before. The initial models were modifications of existing chairs made by hand exclusively by Dr. Dennis Woggon and my contribution came some time later as we moved away from modifying existing chairs and building chairs specifically for the purpose of treating scoliosis.

    The final design was created in 2004 and very minor changes have been made to the current design since that time. It is important to note that our study not find any problems in regards to the design of the scoliosis traction chair, as some of the patients in the study did improve while using the chair, but we did find concerns with the application of the scoliosis traction chair in curves above T11 in particular.

    FixScoliosis: Why did you decide to do a restrospective study of the long-term scoliosis traction chair results?

    Stitzel: The Scoliosis Traction Chair has been in clinical and home use for over a decade and no data on either exists. Some of the doctors in the organization began to question the effectiveness of the ratchet system to de-rotate the thoracic spine, so several of them began to shoot “in chair” x-rays to determine its effectiveness in the late fall of 2011.

    FixScoliosis: .And the results of those “in chair” x-rays?

    Stitzel: Well, as claimed by the manufacturer, the “in chair” x-rays demonstrated a reduction of the cobb angles, but it also clearly indicated in certain cases the compression of the rib cage was forcing the pre-existing adverse spinal rotation in the thoracic spine to increase.

    Obviously, the doctors found this disturbing and immediately began looking into it, but for reasons I can’t discuss, we decided not to pursue it out of fear of reprisal. I and the other members who conducted the research article left the organization January 1, 2014 and made investigating the potential increase in thoracic rotation in the Scoliosis Traction Chair a priority research project.

    FixScoliosis: Were you surprised by the results of the data that was collected?

    Stitzel: Actually no, we had a pretty good idea of what was happening based off the preliminary “in chair” x-rays back in 2011. A few of us even started to look into ways to mitigate the negative effects of the Scoliosis Traction Chair on thoracic spine rotation and even stopped selling them to patients for home use, all-be-it against the current regulations of the CLEAR Scoliosis Institute.

    What we did find a bit shocking was how clear the distinction was between the patients with curve apexes above T11 and the patients with curve apexes below T11 who used the chair in the office and at home. All, but one of the cases with curve apexes above T11 demonstrated increase thoracic rotation and saw their curves increase by an average of 16° over the next 6 months. In stark contrast, all but one of the patients of patients with curve apexes below T11 demonstrated no increase in thoracic rotation and saw their curves improve by an average of 9° over the next 6 months.

    Given the small sample size and short outcome assessment period (6 months) of our study, It still isn’t proven that increased thoracic rotation seen in the “in chair” x-ray is directly correlated with poor long term outcomes in our study.

    FixScoliosis: Have you been contacted by the CLEAR Scoliosis Institute or the manufacturer of the Scoliosis Traction Chair (Vibe For Health) since the study has been published?

    Stitzel: Since the article has been published? No. However, I personally reached out to both the head of the CLEAR Scoliosis Institute and the CEO of Vibe For Health in regards to our concerns and requested an immediate moratorium on the use and sale of Scoliosis Traction Chairs for the treatment of scoliosis curvatures above T11 until they conducted their own investigation and research into the matter. If a legitimate concern existed, I requested they publish the results of the original investigation and any follow up research demonstrating the elimination of the increase thoracic spinal rotation caused by the scoliosis traction chair to ensure patient safety.

    FixScoliosis: Did they respond to your request?

    Stitzel: Actually they did respond in the form of a “cease and desist” letter from their attorney. We were very disappointed and made the decision to move forward with publishing the data in the interest of public safety if they declined to voluntarily impose the moratorium. I’m hoping I won’t be hearing from their attorney again in regards to the study or this interview. I wouldn’t be surprised if some effort to discredit the scoliosis activity suit (a newly developed neoprene suit for scoliosis home rehab) is made as well.

    FixScoliosis: As lead author of the study, what are your recommendations for patients who are currently using a scoliosis traction chair in an office or at home?

    Stitzel: There seems to be a very clear correlation between curves above T11 displaying adverse thoracic rotation in the Scoliosis Traction Chair and poor long-term outcomes, so I would recommend having their doctor re-evaluate any “in chair” x-rays for increase thoracic rotation, not just cobb angle improvement and given that virtually 100% of the patients (in our study's small sample size) using scoliosis traction chairs with curve apexes above T11 saw their curvature get worse, I would be very concerned about using it at all without proper supervision.
    Any parent or patient who is uncomfortable with using the scoliosis traction chair after learning of the concerns raised in our study should contact their treating physician or the scoliosis traction chair manufacturer immediately.


    Clayton Stitzel's photo.




























    ..

  9. #24
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    Thanks for posting that.

    It is a symphony of nonsense of course. Stem to stern.

    Nobody involved is doing any research. Where is Stitzel's study published? I am guessing it is on his web page and not in an peer-reviewed journal.

    The T curves got worse because they are the ones that tend to get worse. The L curves didn't because they progress less compared to T curves, at least in adolescence. None of this stuff is is done in a controlled setting. None of this stuff is long-term. It is ALL nonsense.
    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. #25
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    Here's the chair paper in some new journal...

    http://www.clinicsandpractice.org/in...view/642/pdf_4

    Here's the Woggoni complaining about it...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274490/

    Here is Morningstar's response...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274492/
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  11. #26
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    Quote Originally Posted by burdle View Post
    Hi Pooka1,

    I am in the process of contacting Dr Betz on this matter - trouble is I cannot find an email address from him so I will write care of his hospital and hope he gets it. I am in UK so I don't hold out much hope in the way of a reply. I am astonished at the photograph and also the fact that Stitzel's posts on scolismart really rubbish fusion surgery but Dr Betz does fusion surgery not only for people for whom VBT is not an option but also on those for whom VBT has failed. This is never mentioned by Stitzel and I really wonder if Dr Betz realises this.
    Here is his contact info...

    http://www.spineandscoliosis.com/the...dal-r-betz-md/

    I will try to find out more about the alleged association between legitimate doctors and the Clear chiros.
    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. #27
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    Quote Originally Posted by Pooka1 View Post
    Here's the chair paper in some new journal...

    http://www.clinicsandpractice.org/in...view/642/pdf_4

    Here's the Woggoni complaining about it...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274490/

    Here is Morningstar's response...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4274492/
    Thanks for posting- I am a bit confused.

    The reply from the Woggons seems to criticise the Traction Chair study done by CLEAR but The Woggons are founds of CLEA?. The reply from Morningstar and Stitzel rejects their criticism but Morningstar and Stitzel have now left CLEAR and become part of Scolismart but have not taken the Traction Chair with them and now criticise the use of it by CLEAR?

  13. #28
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    Quote Originally Posted by burdle View Post
    Thanks for posting- I am a bit confused.

    The reply from the Woggons seems to criticise the Traction Chair study done by CLEAR but The Woggons are founds of CLEA?. The reply from Morningstar and Stitzel rejects their criticism but Morningstar and Stitzel have now left CLEAR and become part of Scolismart but have not taken the Traction Chair with them and now criticise the use of it by CLEAR?
    I don't know exactly what is going on. I think Stitzel has claimed to have invented the chair in his basement at one point but I could be wrong.

    I think Stitzel joined the Woggons at Clear at some point and them left. Stitzel continued to use the chair at his Clear clinic. When he left Clear I guess he couldn't take the chair with him and "serendipitously" noticed something bad about the chair, the same chair he had been using and CHARGING patients for and SELLING it to them at several thousand dollars a piece I think. This is exhibit A thru Z on why chiros should not be allowed to treat scoliosis. When I screw up the interest I will review the article, comment, and response.
    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. #29
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    Okay I read the paper. Apparently, the 15 cases were the only people who followed the protocol of:

    i) they used the scoliosis traction chair as part of their scoliosis management; ii) they received an in-chair radiograph to evaluate positioning and effect; and iii) they presented to the office for a 6 month follow-up exam. A total of 15 cases met this criteria and were therefore used for this present study
    They have had hundreds of patients and only 15 followed the protocol. If everyone did the first two things then they lost all but 15 patients to follow up at 6 months. Hundreds of people did not return at 6 months apparently. That's an important result right there.

    Since they were all the cases that met the criteria, they are by definition "consecutive." So I don't understand why they said they were consecutive. They should have said they selected all cases that met these criteria.

    The main thing that makes this unpublishable in my opinion is the lack of a control group. Because the results conformed to known factors (Risser, type of curve) affecting progression, there is no evidence that anything the chair did or didn't do affected any outcome WHATSOEVER. They are assuming just because the kids were put in chairs means it must have had some measurable effect on outcome. In my opinion, the chair can't possible help or hurt progression potential whether or not it has measurable de-rotation or not for 30 minutes a session, twice a day for a few weeks (or whatever). Because they didn't have a control group, and because it was only 15 cases, and because only 15 kids out of hundreds followed the protocol, nothing can be said either way. The results don't apply to anything.

    After I recover a little, I will force myself to read the complaints from the Woggoni and the response from Morningstar but it really doesn't matter what they say... the small sample size and lack of a control group make this unpublishable. They are arguing chair placement on the Titanic deck at this point.
    Last edited by Pooka1; 12-04-2015 at 04:32 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."

  15. #30
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    Hello!

    Interesting development at the end of this specific thread topic.

    I first came across Morningstar's work and development of CLEAR back in the day. And while I didn't like some of the methods, I felt like Morningstar's discussion was very good. (Assuming I am remembering all of that correctly). The thing that really always upset me about it was that the article stated that while no evidence could be found to indicate spinal adjustment in AIS patients, they felt like adjustment was still warranted. After I picked up and reassembled the parts of my exploded head, I, more or less, left the paper alone.

    It seems to me that Steizel and Morningstar and perhaps others started having doubts about the traction chair. And then the fall out happened. And now they did a retrospective study on the outcomes of the traction chair. They seem to be concerned that it might make some curves worse. 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.

    Anyway, interesting developments for sure. I only wish hundreds of patients hadn't been misled, possibly made worse and money wasted.

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