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Thread: Setting the Record Straight

  1. #1
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    Setting the Record Straight

    In the previous SpineCor 59 Year old thread my name was mentioned several times, and false and misleading remarks were inappropriately made against me. ClickHere!.

    I'd like to clarify a few points for the record;

    1. Three of my five children have scoliosis. Two of them were braced. In both cases the progression of the curve was halted. One child wore a modified Boston Brace and the other wore SpineCor. I also have a brother who was successfully braced with the Milwaukee brace in the 70’s, and a niece who was successfully braced more recently with a Providence nighttime brace (27o pre-brace: 17o in-brace and 21o two years post-brace as per her x-ray last week). In total there are 12 people in our family with scoliosis.

    2. I am fused from T4-L5 after four surgeries. The first was in 1966 and the most recent was in 1997. My journey was documented publically in a poster I prepared for the SOSORT Boston meeting we hosted in 2007. The abstract for that poster was published in the SCOLIOSIS journal at http://www.scoliosisjournal.com/content/2/S1/P9

    3. The primary mission of the National Scoliosis Foundation is the early detection and treatment of scoliosis. I have been on the Board since 1978 and became the President in 1993. I have had extensive collaboration with the research and medical community on a global basis for the conservative management and acute health care for chronic spinal deformities with a special focus on trying to find the cause, prevention and cure of adolescent idiopathic scoliosis. In 1996 I was recognized in the U.S. Congressional Record for biking across the country to raise national awareness about scoliosis and the need for etiology research. This campaign helped to establish a new directive in the field of scoliosis and led to seed funding, NIH funding, and private investment supporting potentially new genetic screening and biochemical methods to detect and treat progressive scoliosis.

    For more than a dozen years I have provided scoliosis education and screening training to school nurses, physical education teachers and other healthcare professionals. I have given oral presentations and poster displays at numerous medical conferences throughout the world. I have also consulted, edited or co-produced a dozen books and videos on scoliosis and co-authored six papers published in Studies in Health Technology and Informatics, Disability & Rehabilitation, and the Scoliosis Journal. I am also a Board member and Treasurer for the Society On Scoliosis Orthopedic and Rehabilitative Treatment (SOSORT) and was elected as an Honorary Fellow by the Scoliosis Research Society (SRS) in 2006. I currently serve on four SRS committees.

    4. I met Dr. Charles Rivard in 1996 at a meeting of the International Research Society for Spinal Deformity (IRSSD) and learned about his work. In 1998 he presented his first clinical results at the Scoliosis Research Society (SRS) meeting in New York and we wrote an article about it in our Spinal Connection newsletter to inform the patient community. http://www.scoliosis.org/resources/m...s/spinecor.php

    5. In 1999 I became the President of Biorthex USA and along with two physical therapist colleagues introduced the SpineCor brace into this country. During a 1 ½ year period we worked with Dr. Rivard and Dr. Christine Coillard to open 25 clinics with orthotists and orthopedic surgeons who were primarily SRS members. In total, 325 patients wore the brace during this time. In 2001Biorthex decided to concentrate their financial resources into a surgical product with a much larger market potential and sold SpineCor to the current owner in the UK who is a certified orthotist and experienced SpineCor clinician. I have no financial interests in this company or any SpineCor product or related clinic.

    6. My thoughts about SpineCor are publically documented in the 1999 video now viewed by many people on youtube http://www.youtube.com/watch?v=6TBtDSHp_Ko .

    7. I joined Biorthex because I shared Dr. Rivard’s belief that we needed improved methods to treat children with scoliosis. He is a respected Orthopedic Surgeon who has made tremendous personal and professional sacrifice to find better ways to care for his patients whether it was dynamic bracing, or non fusion surgical instrumentation. Millions of dollars were invested and almost ten years of multicenter research and development occurred before this brace was commercialized. This is the type of rigorous standards all non operative and surgical methods should live up to. Unfortunately, too many practitioners today think that website proselytizing, internet marketing, and anecdotal youtube testimonials suffice as scientific evidence to support their device or method. You and your children deserve, and need, more than that.

    8. The SpineCor brace was designed and developed for adolescent idiopathic scoliosis. The indications and contra-indications are clearly defined on the SpineCorporation website, and the FAQ’s http://www.spinecorporation.com/Engl...mation/faq.htm contain very straightforward answers to many of the questions about the brace including pricing, vestibular testing, chiropractic treatment, and use by adults.

    9. The use of this brace for adults is experimental at this stage, until such time as appropriate studies are published to evidence the benefits and harms. But that is no reason to be upset about studying the use of this brace for that purpose. And it is certainly no justification for anyone to prevent, or gang up on, someone who is part of the study to share their experience with the community. If we adopted that same attitude towards surgery we would be still be having patients spend a year in bed in plaster body casts.

    10. As stated in the Welcome page, this Forum is intended to be a community center to give all patients and families an opportunity to give and receive vital information and support. While we may have common unity in the characteristics of our spinal deformity, our individual situation and experiences are unique and we need open communication for all in an environment that shows courtesy and respect for, and by, everyone.

    11. Anyone unwilling or unable to abide by the spirit of item #10 is kindly asked to leave the Forum and find another venue to satisfy your needs.
    Best Regards,

    JOB

  2. #2
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    Joe:

    I thank you for your post today. I have been finding it increasingly difficult to post onto this forum recently since certain individuals are determined to tell me how to think, they are rude and closed-minded. I read the New Posts daily since I desperately need help with and a place to talk about my daughter's scoliosis but usually don't post onto the site anymore because the responses are upsetting.

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  3. #3
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    Thanks Joe.

    For the record, I think it's great that the use of the brace is being studied in adults, and I suspect most people feel the same. The problem in the other threads came about when some false claims were made.

    For the rest, here are the correct facts from one of the links in Joe's post:

    Can an adult be fitted with SpineCor?

    A US study is now evaluating the use of SpineCor ttreatment for adult patients. The treatment objectives for adults are quite different to children but the same principles of postural re-education through dynamic exercise and neuromuscular feed back still apply. Treatment objectives for adults are postural improvement and pain reduction. Whilst postural improvements may lead to very small Cobb angle reductions, true correction of scoliotic curves in adults is not possible and should never be the treatment objective. Early results with adults are very positive, with both postural improvements and pain reduction in all patients to date.

    Can the brace be used on an adult to reduce back pain?

    Theoretically pain reduction in adults is possible, early treatment results do seem to support the hypothesis.

    Has any thought been given to eventually having an ''adult'' brace?

    Yes, for the moment the size range of the paediatric brace has been expanded for adult use. In the near future a specific adult SpineCor postural rehabilitation brace (P.R.B.) will be launched.

    Regards,
    Linda

  4. #4
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    Linda,
    Might I suggest that you edit your first post in the Adult SpineCor thread so those portions of the FAQ are up front and center.
    You might also consider posting Joe's points 8 and 9 there in the first post too.
    Might reduce the need/urge to reiterate everything.

  5. #5
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    Thanks CD. Done.

  6. #6
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    Thanks for your post, Joe. No one here should be a victim of innuendos.

    Good to see a posting from the President of NSF.

  7. #7
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    Thank you Joe

    Yours, a valuable posting for all. Thank you also for comments on youtube, I see you have posted there as well as the President of the United States! Exciting times we are living in where information is literally at our fingertips – and youtube being a reflection of the Internet itself as it continues to grow and embrace a wide array of subject matter, we find both good and bad information there – challenging all to develop good research skills. Learned how to tune my new twelve string guitar there – and have found it very informative in my research of many things actually – including the latest greatest from the President.

    The Internet has become a valuable tool – without it I would have never known about Spinecor, without youtube – I would have had little knowledge of shared first hand experience regarding adult use. A valuable post yours, for all our continuing collective research and sharing of experience. The link to the Spinecor manufacturer, very good … the work in the field – even better, in terms of real life experience. It takes so long for research to become published and made available (and even then we must look to inspect it well), but thanks to the era of Information Technology – and the resulting ability for rapid fire exchange of information between people not only like myself but also the medical/research/scientific community as well – we now live in amazing times. A renaissance of information in the 21st century, really.
    Last edited by mamamax; 04-23-2009 at 09:10 PM.

  8. #8
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    Not everyone is interested in, or particularly wants, the facts. That's a FACT.

    The question in my mind is should a forum such as this that is concerned with disseminating facts about a serious medical condition be used as a vehicle for purposes other than to disseminate facts? I think not.

    As to folks who openly behave as if they don't want the facts or who otherwise are open about accepting counterfactual material, I think all we can do is apply conversational pressure for these folks to start making sense. I think this needs doing for the sake of folks who are actually interested in facts.

    Otherwise this might as well be a group sing-a-long.

    Just my opinion.
    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."

  9. #9
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    Sharon-- part of the purpose of this forum is to support and encourage people, not just provide facts. Where's the human side of your statement-- the caring, concern, sharing, uplifting, and all the rest of the emotional and mental side of our lives? You left that out of it. A lot of people seek (and need) the kind of support that helps them get through the stress and emotional trauma that scoli often/usually brings with it. That is often generated through the knowledge that others understand and can relate to what they are going through; that others are willing to share and encourage... This is not just a scientific/research only forum but rather a group of people who help each other with a difficult challenge that we all (or most of us) share. I probably have not said that very well, but I'll bet there are many many people who understand what I mean. I hope you can see that side. This is a people place as well as an information place. And the information side of it also includes day to day knowledge of how to get through life with scoli, surgery, pain, successes, disappointments, and all the rest of it.
    66 and still heartbroken...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  10. #10
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    Pooka1,

    I have read this forum for over a year now and lots of the postings from the history as well. I haven't requested posting privileges until recently because of the nasty treatment of posters by certain people on this forum whom you may recognize. What you consider to be "conversational pressure" I consider to be ideological brownshirt tactics. I can now understand what Galileo went through, it wasn't the fault of the Catholic Church, it was the received wisdom of the scientists of that day who felt they could ridicule and squash any other ideas that fell outside their belief system.

    My daughter was diagnosed at twelve with a 35 degree extremely rapidly progressing curve, Risser 0 and premenarchal. Ten months before she was screened by the nurse at school and noted for possible scoliosis, her pediatrician (who has a specialty in orthopedics) had checked out her spine thoroughly for scoliosis, went down her back vertebrae by vertebrae, with me watching, and said she was straight. Ten months later she had a 35 degree curve. We were told that she would probably progress to surgery, but was given a Charleston bending brace. My daughter is now three inches taller, fourteen years old at the end of this month and five months post-menarche. The orthopedist thinks her curve is probably going to stay where it is at this point, even though she will continue wearing a brace for the next year at least. The latest measurement of her upper curve, with 24 hours out of brace, was 32 degrees.

    What happened to my child doesn't fit in with your pre-conceived notion that braces don't work. So therefore, I guess you'll have to accept that it was a miracle that occurred.

    Please don't respond that the curve would have stopped on its own naturally at that point. The curve kept noticeably progressing during the weeks it took to get the brace made and shipped from Florida, as I watched her shoulder move up and her scapula protrude more every night at ballet class. I know for a fact she would have been in surgery within months if she hadn't been given that brace. What she had going for her was she's thin, has a very flexible spine, and had great results with brace correction....she also continued to do ballet six days a week.

    I really don't understand why you are pushing so hard to try to convince everyone that bracing doesn't work. If I hadn't been allowed a brace for my child and told to just let her progress to surgery, when bracing works for a significant number of people, I would have been outraged. No medical treatment works for 100% of patients. It doesn't mean the doctors don't try.

    For an investment of $3500 that brace has saved the medical system hundreds of thousands of dollars. If she, for some reason, continues to progress when she's an adult, I'm happy that she's been given the chance to continue her ballet now, and to have a chance for a flexible scoliosis surgery in the future.

    So please, for everybody's sake...keep your proselytizing for your faith under control. It is as offensive to me as "God bless you" is to you.

    And thank you Joe for your efforts with scoliosis screenings in the school system. That was a Godsend for my daughter. It is much appreciated.

  11. #11
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    Quote Originally Posted by Susie*Bee View Post
    Sharon-- part of the purpose of this forum is to support and encourage people, not just provide facts. Where's the human side of your statement-- the caring, concern, sharing, uplifting, and all the rest of the emotional and mental side of our lives? You left that out of it. A lot of people seek (and need) the kind of support that helps them get through the stress and emotional trauma that scoli often/usually brings with it. That is often generated through the knowledge that others understand and can relate to what they are going through; that others are willing to share and encourage... This is not just a scientific/research only forum but rather a group of people who help each other with a difficult challenge that we all (or most of us) share. I probably have not said that very well, but I'll bet there are many many people who understand what I mean. I hope you can see that side. This is a people place as well as an information place. And the information side of it also includes day to day knowledge of how to get through life with scoli, surgery, pain, successes, disappointments, and all the rest of it.
    I don't think I have argued against anything you said.

    The problem comes in when folks use counterfactual material to help with the stress and trauma. That misleads others who do want the straight dope but don't know what it is or if not known, what the consensus among the professionals is at any moment.
    Last edited by Pooka1; 04-24-2009 at 10:27 AM.
    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. #12
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    Quote Originally Posted by Ballet Mom View Post
    Pooka1,

    I have read this forum for over a year now and lots of the postings from the history as well. I haven't requested posting privileges until recently because of the nasty treatment of posters by certain people on this forum whom you may recognize. What you consider to be "conversational pressure" I consider to be ideological brownshirt tactics. I can now understand what Galileo went through, it wasn't the fault of the Catholic Church, it was the received wisdom of the scientists of that day who felt they could ridicule and squash any other ideas that fell outside their belief system.
    If it wasn't the Catholic church then why did they apologize for it?

    The-Vaticans-Turn-To-Recant

    My daughter was diagnosed at twelve with a 35 degree extremely rapidly progressing curve, Risser 0 and premenarchal. Ten months before she was screened by the nurse at school and noted for possible scoliosis, her pediatrician (who has a specialty in orthopedics) had checked out her spine thoroughly for scoliosis, went down her back vertebrae by vertebrae, with me watching, and said she was straight. Ten months later she had a 35 degree curve. We were told that she would probably progress to surgery, but was given a Charleston bending brace. My daughter is now three inches taller, fourteen years old at the end of this month and five months post-menarche. The orthopedist thinks her curve is probably going to stay where it is at this point, even though she will continue wearing a brace for the next year at least. The latest measurement of her upper curve, with 24 hours out of brace, was 32 degrees.

    What happened to my child doesn't fit in with your pre-conceived notion that braces don't work. So therefore, I guess you'll have to accept that it was a miracle that occurred.
    You are misstaing my position. I have continually said we don't know that bracing doesn't work (search on that phrase... you will find it in several of my posts). We have no robust evidence that it does work because of the lack of controls. But your experience also doesn't prove that the brace worked. Some curves stop, even large ones. Consider Pam's which was stable for decades at ~50*.

    Please don't respond that the curve would have stopped on its own naturally at that point. The curve kept noticeably progressing during the weeks it took to get the brace made and shipped from Florida, as I watched her shoulder move up and her scapula protrude more every night at ballet class. I know for a fact she would have been in surgery within months if she hadn't been given that brace. What she had going for her was she's thin, has a very flexible spine, and had great results with brace correction....she also continued to do ballet six days a week.
    My daughter who is in the Charleston got a 100% correction in brace. She has gone through stable periods in and out of brace. She has also gone through unstable periods in and out of brace. There is no pattern. I'm glad your daughter stabilized in brace.

    I really don't understand why you are pushing so hard to try to convince everyone that bracing doesn't work. If I hadn't been allowed a brace for my child and told to just let her progress to surgery, when bracing works for a significant number of people, I would have been outraged. No medical treatment works for 100% of patients. It doesn't mean the doctors don't try.
    I'm going to insist you stop mischaracterizing my position. You are reckless at this point. I have NOT said those things nor are they my position. I am maintaining there is no robust evidence bracing works and I certainly think people should get braces if they want. How do you explain all the orthopods who never brace and yet are not sued for malpractice? There must be some reason. What is that reason?

    There is evidence and there is a lack of evidence. Bracing efficacy fails into the latter category at this point.

    In re bracing efficacy, we seem to have a lot of people who know it but don't show it. That falls short of proof in my world.
    Last edited by Pooka1; 04-24-2009 at 07:34 AM.
    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. #13
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    The key difference

    Position A: "There is no proof X is effective."

    Position B: "There is proof X canNOT work because it violates known biology or a law of physics or something."

    I have be falsely accused of taking Position B towards bracing. I do not.

    I take Position A (and so do many experienced orthopedic surgeons).

    Some other helpful tidbits...

    The plural of "anecdote" is not "data."

    "If you don't have controls you don't know the hell is going on."
    Last edited by Pooka1; 04-24-2009 at 08:07 AM.
    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. #14
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    Quote Originally Posted by Ballet Mom View Post

    I really don't understand why you are pushing so hard to try to convince everyone that bracing doesn't work.
    I hope our discussions about the topic have not misled anyone.
    We are amateurs trying to look at the evidence so we can make decisions for our kids.

    Even the most ardent opponent to bracing would never say it doesnt work. (I hope)

    Some say "it works"

    Others say "We dont know if it works"

    No one says, "It doesnt work"

    (Then we can discuss what "working" means and if it "works", when does it work (what age and what curves...)

    You have to realize though, that there is a chance, that indeed the medical community will discover one day that bracing doesnt "work". It is more likely they will discover WHEN and for WHO it works. That will be useful information because no one wants to unnecessarily treat a child with a brace. And we do know that SOME kids are unnecessarily treated (we just dont know which ones and how many exactly).

  15. #15
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    Quote Originally Posted by Pooka1 View Post
    I'm going to insist you stop mischaracterizing my position. You are reckless at this point.
    Sharon,

    I think your position of repeatedly stating here that surgery cured your child is reckless. Surgery is a treatment, not a cure. There is no cure for scoliosis, and that’s a FACT.

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