Page 1 of 2 12 LastLast
Results 1 to 15 of 285

Thread: Setting the Record Straight

Hybrid View

Previous Post Previous Post   Next Post Next Post
  1. #1
    Join Date
    Sep 2003
    Location
    Hanover, MA
    Posts
    34

    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
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    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
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    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
    Join Date
    Dec 2008
    Posts
    494
    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
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    Thanks CD. Done.

  6. #6
    Join Date
    Oct 2005
    Location
    Chicago north suburb
    Posts
    774
    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
    Join Date
    Apr 2009
    Posts
    1,258
    Quote Originally Posted by NMFB View Post
    i would like to add three thoughts to this forum regarding the adult use of the SpineCor.

    Read and research every article, posting, study, and web site, written since 1999 before purchasing.
    Keep in mind that this brace was invented in Canada and is manufactured in the UK.
    Put off purchasing the brace until you have had time to think about it, even if it means making two trips.
    Dear NMFB - Welcome to the National Scoliosis Foundation Forum. Perhaps many here would like to better understand why you would join, and make this your first posting. The President of NSF (who started this thread) speaks well of this brace, in fact - one of his children was successfully treated with this brace. Adults have been using it for about five years. It is currently my treatment of choice, and i am finding it most satisfactory. Certainly, there is no one treatment that works for everyone. What was your personal experience, that moves you to make these comments?

  8. #8
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by mamamax View Post
    Dear NMFB - Welcome to the National Scoliosis Foundation Forum. Perhaps many here would like to better understand why you would join, and make this your first posting.
    I don't think there is anything odd about NMFB's posting. These are his/her thoughts. I'm sure if we looked at everyone's FIRST posting, and tried to analyze it, I'm sure we could come up with all sorts of questions.

    Please try not to be so defensive anytime someone questions the use of Spinecor for adult use. That could cause folks to wonder why YOU post that way, no? I'm not trying to attack you or anything, so please don't interpret it that way - I'm just stating that I don't think there is anything unusual about NMFB's post - his recommendations make perfect sense to me - and I honestly don't think it's fair that because someone has different thoughts than you do (on Spinecor for adults) they have to explain why they included those thoughts in their first post. Would it be different if it was his third or fourth post?

    NMFB is basically telling folks to do their research with respect to Spinecor for adult use, to read every article and posting they can find, and to THINK before they rush into anything.

    What's odd about that?
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by mariaf View Post
    I don't think there is anything odd about NMFB's posting. These are his/her thoughts. I'm sure if we looked at everyone's FIRST posting, and tried to analyze it, I'm sure we could come up with all sorts of questions.

    Please try not to be so defensive anytime someone questions the use of Spinecor for adult use. That could cause folks to wonder why YOU post that way, no? I'm not trying to attack you or anything, so please don't interpret it that way - I'm just stating that I don't think there is anything unusual about NMFB's post - his recommendations make perfect sense to me - and I honestly don't think it's fair that because someone has different thoughts than you do (on Spinecor for adults) they have to explain why they included those thoughts in their first post. Would it be different if it was his third or fourth post?

    NMFB is basically telling folks to do their research with respect to Spinecor for adult use, to read every article and posting they can find, and to THINK before they rush into anything.

    What's odd about that?
    I agree there is nothing nefarious about the post.

    It's interesting how some folks become wary of other folks who advise doing research before jumping into a treatment.

    Is there a term for fear of research or fear of factual material? If not there should be.
    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. #10
    Join Date
    Dec 2008
    Posts
    494
    Maybe not nefarious, but certainly mysterious.

    I second mamamax's question:

    What was your personal experience, that moves you to make these comments?
    Seriously, I get the feeling from this post and other comments that there is something about the SpineCor that we dont know about. It's like no one wants to go on record saying something concrete.

    I heard (and dont wish to reveal the source so take it with whatever grain of salt you wish) that some doctors on the west coast tried it, had poor results, and are currently sitting on the data instead of publishing it (and this relates to AIS use, not adult use). Dr Dolan on the other forum made a passing comment about it also. Linda has made some vague comments (perhaps I've read to much between the lines), Joe Obrien stopped his involvement for some reason (probably none of our business but still, it makes one wonder, no?). US Doctors tried it and mostly stopped. I dunno, it just seems mysterious. This poster adds comments about the relevance of where it was invented and manufactured. I feel like I am missing something. (missing more than my $3500 )
    Last edited by concerned dad; 05-09-2009 at 09:58 AM.

  11. #11
    Join Date
    Apr 2009
    Posts
    1,258
    Agree with you CD - mysterious. Thinking: if one is brave enough to become a member and make such a first posting .. that the rest of the story should be told.

    Like you - i have searched in depth regarding this treatment before beginning it and i continue to do so. In my searching - came across a west coast chiropractor (who shall remain nameless), who on his website - puts the Spinecor brace in the same category as the Copes and Boston braces. Naturally, i wrote to inquire about this. Said provider says - he has had one patient (i.e. he only treated one)who did not respond to treatment, said provider was trained by Spincor, and this provider says the brace does not address the entire spine (i.e., cervical and lumbar regions). Said provider/chiropractor says he displays said brace on his wall (there's a picture).

    I have questioned: did said patient follow protocol, were there extenuating circumstances that would prevent treatment .. have not yet received an answer. Curious this. Now - personally, i can feel the affect on cervical and lumbar sections of my spine. My provider (recommended by my orthopedic specialist) was trained by Rivard and Colliard (feeling very good about that), incorporates Schroth exercises and makes frequent trips to the clinic in Germany to stay abreast of current treatments there (feeling ever better about all that). Also, my provider's practice, has treated over 1,000 adults. And i am following protocol. Also - have a private message off forum from a fellow patient who shares the same provider (and who also receives regular chiropractic treatments) .. she said that that after 4 days in-brace her chiropractor was astounded at the good shape of her spine (she has not told him of her treatment yet) .. so, interesting. I have never seen a study (and i search for studies) that claims the Spinecor brace does not address the entire spine. Maybe our new member will share more details. Personally - i'm not as concerned about the cost of any treatment, as i am about results.
    Last edited by mamamax; 05-09-2009 at 11:18 AM.

  12. #12
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by concerned dad View Post
    Maybe not nefarious, but certainly mysterious.

    I second mamamax's question:



    Seriously, I get the feeling from this post and other comments that there is something about the SpineCor that we dont know about. It's like no one wants to go on record saying something concrete.

    I heard (and dont wish to reveal the source so take it with whatever grain of salt you wish) that some doctors on the west coast tried it, had poor results, and are currently sitting on the data instead of publishing it (and this relates to AIS use, not adult use). Dr Dolan on the other forum made a passing comment about it also. Linda has made some vague comments (perhaps I've read to much between the lines), Joe Obrien stopped his involvement for some reason (probably none of our business but still, it makes one wonder, no?). US Doctors tried it and mostly stopped. I dunno, it just seems mysterious. This poster adds comments about the relevance of where it was invented and manufactured. I feel like I am missing something. (missing more than my $3500 )
    There is a feeling in some sectors of orthopedics that the published results on Spinecor are not necessarily as detached and dispassionate as they should be for research. In other words, they are not believed because the only articles that purport to show the brace works are from the designers and(or) manufacturers. The fact that there is a study out there done by a group with no financial stake in Spinecor which showed it was a failure is consistent with this thought.

    Not saying one study is dispositive but I am saying it is interesting that the one group with no dog in the fight had radically different results. Now I think there is some issue with different methodologies (always the first thought when aberrant results are published) but it's interesting nonetheless. I have read the Spinecor response to the article but I don't have enough information to know if they laid a glove on the paper.
    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
    Join Date
    Dec 2008
    Posts
    494
    Quote Originally Posted by NMFB View Post
    i would like to add three thoughts to this forum regarding the adult use of the SpineCor.

    Read and research every article, posting, study, and web site, written since 1999 before purchasing.
    Keep in mind that this brace was invented in Canada and is manufactured in the UK.
    Put off purchasing the brace until you have had time to think about it, even if it means making two trips.
    I love this post! Very mysterious, got me thinking.
    The problem is, well, I think I read every paper I could find (and I looked hard) on the spinecor. So I'm not sure what I missed. No idea what you may be alluding to.
    Regarding the country of invention and manufacture. I guess the relevance of that escapes me.
    WRT the two trips, well, for adult use, it seems you might be able to tell right off the bat if pain is reduced, for kids, I think it would be good to look at the inbrace xrays before buying.

    But, I guess we're going to need more details. Just what are you saying?

  14. #14
    Join Date
    Apr 2009
    Posts
    1,258
    Quote Originally Posted by concerned dad View Post
    I love this post! Very mysterious, got me thinking.
    The problem is, well, I think I read every paper I could find (and I looked hard) on the spinecor. So I'm not sure what I missed. No idea what you may be alluding to.
    Regarding the country of invention and manufacture. I guess the relevance of that escapes me.
    WRT the two trips, well, for adult use, it seems you might be able to tell right off the bat if pain is reduced, for kids, I think it would be good to look at the inbrace xrays before buying.

    But, I guess we're going to need more details. Just what are you saying?

    Agree with you CD - i too would like more details.

  15. #15
    Join Date
    Jul 2008
    Posts
    407
    Quote Originally Posted by concerned dad View Post
    Regarding the country of invention and manufacture. I guess the relevance of that escapes me.
    That was the thing that got me. Invented in Canada? I never knew that was a bad thing.

    My only concern is wild claims by people or organizations. The point about research is a good one, and usually what brings people here too.

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •