Setting the Record Straight

[Joe O'Brien]

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/medicalupdates/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/English/PatientInformation/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.

[rtremb]

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

[LindaRacine]

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

[concerned dad]

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.
;)

[LindaRacine]

Thanks CD. Done.

[CHRIS WBS]

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

Good to see a posting from the President of NSF.

[mamamax]

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.

[Pooka1]

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.

[Susie*Bee]

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.

[Ballet Mom]

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.

[Pooka1]

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.

[Pooka1]

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 (http://www.beliefnet.com/News/2000/03/The-Vaticans-Turn-To-Recant.aspx)

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.

[Pooka1]

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."

[concerned dad]

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).

[CHRIS WBS]

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.

[Pooka1]

Her surgeon told me she is back in the general population for risk of all future back issues.

I call that a cure. What do you call it?

To further clarify, she is not predisposed over and above an unfused person to any back issues either from having the scoliosis (presumably because it was surgically corrected early, but I don't know that) or from the fusion (because of where is was fused, I do know that because he stated it explicitly). That is my understanding of what I was told. I had it repeated because it sounded crazy. It still sounds crazy but I'm not a surgeon.

[CHRIS WBS]

What do you call it?

I call it and premature and lacking proper caution.

[Pooka1]

Note here I am NOT claiming surgery represents a cure for everyone. I certainly don't KNOW that and therefore can't claim it.

[Pooka1]

I call it and premature and lacking proper caution.

I don't know why the surgeon is so sure. It does sound premature. He might be wrong. But I have no basis whatsoever to claim he is wrong. He has his experience and knowledge of research in this area. I don't.

I don't make the news, I just report it. And in this case, I have reported it accurately.

[debbei]

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.

Ballet Mom,

Good luck with your daughter. I truly hope that she doesn't progress in the future. But I don't think you can declare her treatment a success untill WELL into the future...10, 15 years or more. As a teenager I was also deemed a success. Not that I don't think bracing can't work, but at this point you're just not sure yet.

[lady]

Joe, thank you for your time, effort and dedication re scoliosis.

[Christl]

I second lady. But also have to say, I cannot believe this thread turned out to be like the rest. Where is the support, on any level?

[Qikdraw]

I guess I'll put my two cents in on this subject, although coming from a complete amature on the subject...

Bracing didn't work for me, not one bit. I wore a brace since age 2 and wore it for 11 years and my curve grew progressivly worse, until I was over 100 degrees at age 12.

Thats not to say that bracing won't work for some people. I think there is so much unknown about what causes scoliosis that we simply have little way to help treat it. Which may be why it works for some, but not others.

The best I think we can say about bracing is that, for some people, it will halt the curve. Which is a good result and hopefully it stays that way. It doesn't always, so it does need to be watched at all times, but the hope is it will stay.

I think that some people come in and are so happy with the treatment they are going through, and how much better they are feeling, that they want to share their joy, but it may come out the wrong way, as a push for that type of treatment.

As a community we do need to be supportive of each other, and our successes. We also do need to be wary of people promising the moon to those that are vulnerable and seeking answers.

Just my two cents...

Can't we all just get along? :)

Brad

[Pooka1]

Can't we all just get along? :)

Or at least can't we all just try to make sense? :)

[mamamax]

The propensity to title my written sharings, will not go away and I no longer even try to avoid it (please bear with me here).

Praise Song For The Day (my offered title) as many know, is a free verse sort of poem in 14 unrhymed tercets with a single finish - written by Dr. Elizabeth Alexander from Yale University, and presented on inauguration day for fellow poet President Obama, and the world. Video via youtube: http://www.youtube.com/watch?v=nH6fC3W3YvA and text version here: http://www.poets.org/viewmedia.php/prmMID/20545

The genre, defined here: http://www.britannica.com/EBchecked/topic/473871/praise-song

I am pleased to see it on youtube along with other notable leaders. I am stunned by the lack of knowledge and disrespect shown in some comments (obviously made without research). I keep meaning to leave a supportive one there.

A line from this poem often comes to my mind: We need to find a place where we are safe ...


I’m so grateful for this thread, thanks again Joe – thanks because, the sharing of our collective stories/information in this forum, across all categories, is all the better for what you have shared with us in your posting of Setting The Record Straight. I nominate it for #1 posting in the entire history of NSF forum. As need may arise, I will refer to your wisdom both here in forum, and think it may serve good purpose even outside of forum. Admirable leadership qualities shown here (by one of our own), from my perspective.

I read your posting daily, and review it as reference (along with comments added) before posting. The reason I do that is because your posting/essay covers (in a unique way) everything I personally have experienced when communicating with others (both in and out of forum). In fact, your thoughts here have even personally inspired, led, & helped me, greatly, in a group meeting today where I am employed.

In forum, your posting supports both the wealth of truly factual material we may find here and it addresses the truly counter-factual (if not downright hostile) information that we may also be tested mightily (to nearly wits end) to experience. You address these things in a calm, yet firm and controlled manner which holds attention of those with purpose toward true altruistic sharing of a serious condition, in a place seriously created for us (by one of our own) towards sharing our individual experience, information, concerns, remedies, and inspiration regarding both our individually unique and yet collective conditions. Thank you for the freedom and safe haven you have given and prepared for us to do that, through Setting The Record Straight.

And, as I have come to understand, the NSF forum in its entirety, is often watched by many non-members including numerous professionals in the medical/research fields. Some non-members watch in their continuing research of information for themselves and/or a loved one. Other professionals in the healing arts watch to gather observational facts relative to first hand patient information that seldom surfaces elsewhere … information, which may help inspire our altruistic healers in search of remedy for many good souls (approximately 2-3% in number of the worlds population, equating to approximately 180 million people world wide, each a valuable (and often times suffering) human being. This is noteworthy I believe as both our fellow patients, and our healers also deserve to see and hear us amid an atmosphere of respect vs. one of hostility.

Greatly admire any writing style that offers what yours has offered here Joe. The Art of Happiness by the Dalai Lama, comes immediately to mind (in my personal experience), as well as publications by Joel Olsteen, for sake only of brief comparison (of both professional style and bottom line, real life, conclusions).

If you were to write a book – then based on just the information contained in your compelling essay/posting alone (and the manner in which it has been presented), I for one would be looking for it, and would purchase it (preferably an autographed copy). If you do write one - please do not let anyone edit your style out of existence (as some editors are prone to do) – for I believe your style touches many (regardless of Faith or lack thereof which may be seen as a pseudo faith unto itself), in a way that the majority can (and does) both understand and truly appreciate.

While my observed and repetitive acknowledgment and gratitude (for such information as is posted by yourself or anyone else here in forum), has been heralded , by a select few, as sucking up … I would prefer to observe – I simply have been moved to lift my voice in support of your guidance, as have other brave souls here in forum, as we share a collective and challenging learning experience regarding all forms of scoliosis and respective remedy which has defied complete explanation and/or cure since the days of research by Hippocrates (a Google search of his work in this area is most interesting).

Again, my sincerest thanks and gratitude, just for you being you. As I come across such brave souls as yourself, I am moved in spirit to say – our forum and the world at large – a better place, for your place within it.

Believe your words and thoughts have made some necessary and welcomed changes in our forum lives.

On a humorous note – should it ever be needed (and I think there is good cause to believe it may not be) …. will be Filing this in the signature idea folder. Or maybe just a standard reply for some of the things that have been addressed, would be less bombastic – to wit:

If your spirit moves you to flame
Please read Setting The Record Straight
At least once – if not again

http://www.scoliosis.org/forum/showthread.php?t=8765


Apologies for my long sharing - seem not to be able to edit out one word. The good news Is, I believe I may have satisfied my need of expressed gratitude for the good people here. My sincere wish that other adult Spinecor patients (and other friendly folk) will share with me here:

http://www.scoliosis.org/forum/showthread.php?t=8759

and here:

http://www.scoliosis.org/forum/showthread.php?t=7733

[Ballet Mom]

Pooka1:

If it wasn't the Catholic church then why did they apologize for it?

Because they have some humility, tact and class, which is sadly missing in many people these days. I'm sure they thought they were trying to nicely shut down the squealers and squawkers out there, but I'm sure it hasn't had any effect at all.

[LindaRacine]

This is a scoliosis forum. Posts about religion are now forbidden. All future posts that address this topic will be removed.

[Pooka1]

This is a scoliosis forum. Posts about religion are now forbidden. All future posts that address this topic will be removed.

ALL posts.

[mamamax]

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?

[concerned dad]

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?

[mariaf]

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?

[mamamax]

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.

[Pooka1]

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.

[concerned dad]

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. :confused: (missing more than my $3500 :eek:)

[mamamax]

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.

[Pooka1]

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. :confused: (missing more than my $3500 :eek:)

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.

[Ballet Mom]

For what it's worth, I'll just throw my two cents worth in to this. When the school nurse flagged my daughter for scoliosis, I had my daughter take her shirt completely off. I was stunned to see that my daughter had a completely windswept look to her off to her right side. I realized that the nurse was correct and I immediately set out to research what was to be done to help her. (By the way, I was unable to see her scoliosis with just a small camisole ballet leotard on, which amazes me to this day).

On the internet, I was immediately taken with Spinecor's claims regarding permanent curve reduction and was impressed with the photographs on their site showing the difference in the look of the backs of their patients. I, of course, wanted that for my child too. However, when I went to the orthopedist and I suggested the Spinecor to him, he wouldn't hear of it. And I am so fortunate about that because with the enormous growth forces on her spine in the past year, I am quite sure there would have been no way that a flexible brace made of straps could have possibly held her curve during that dramatic growth phase. The forces on her spine from her rapid scoliosis progression caused her spine to turn into a thoracolumbar curve during the year this growth was occurring while she was wearing the Charleston Bending Brace at night. I was actually scared that we were causing the compensatory curve to turn into a major second curve. There were a few times when I saw her spine in what looked like a muscle spasm very curved, however, she didn't feel any spasm...I thought for sure she would be progressing to surgery.

Fortunately, now that she is past her peak growth, the curve has returned to its initial shape just with both curves slightly smaller than her initial x-ray. In my daughter's case she needed that dramatic in-brace correction she achieved in her brace to weather the huge forces acting on her spine during the past year.

Just another observation, when the orthotist fitted my daughter's Charleston brace I asked him about the Spinecor also, and he felt that the results they achieved were due to measuring differences, not necessarily actual results. And those nice pictures they put up of the improved looking backs, well, I've seen that improvement in pictures of results with the Cheneau braces and, in fact, my daughter's back has improved so she doesn't haven't that windswept look now either. She stands quite straight and vertically.

Obviously, my daughter's experience is not the normal experience, so these are just my observations in case it helps anyone's research here. I'm impressed with the seeming corrections on the younger Spinecor patients on this forum, but I don't think it would have worked with the rapid peak growth that was occurring on my daughter. Just another reason to be very careful about which brace is being used in any particular situation.

[concerned dad]

thanks for sharing that

[Qikdraw]

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. :confused:

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

[mamamax]

Agree Q-D .. what difference could it possible make .. find my mind racing around the universe on that one and remain ever clueless.

Also agree that wild claims, for any treatment, are red flags.

Did an Internet search for "permanent" "correction" and "spinecor". Could not find any web pages (including my provider's) that made any statement to the fact that treatment was a permanent correction. I did find many providers taking more cautionary viewpoints: i.e, it was too early to pass judgment on this. So, if anyone finds one please post it - you know, i'll be writing them a nice letter!

Adult curves, i am learning more about them than i wish (#4 & #10):
http://www.ncbi.nlm.nih.gov/pubmed?term=O'Brien+Joseph%5Bau%5D

Noticing too, that when i read studies, i have to give them second and third looks - after seeing just what i want to see

[Ballet Mom]

Mamamax, it does look like Spinecor has changed the site from over a year ago....they do now tend to be talking about the brace being used for curves under 30 degrees, and not nearly as much information as the curve reduction being permanent.

"SpineCor®’s unique approach to treatment by global postural re-education has been shown to give progressive correction over time which, unlike any previous brace treatment, is extremely stable post brace weaning." That's about the most in a brief look that I've found now (they used to be much more effusive about their permanent reduction results). They still have the same Case Studies up, such as Case Study 4:

http://www.spinecorporation.com/English/index.htm

...and I have to say now that I have a more experienced eye, I can see why the orthotist thinks that their results may have more to do with measuring than what is actually there, especially since as TXmarinemom says, these x-rays may very well be in-brace.

[mamamax]

Hi Ballet Mom ~

The web link you give only brings up the Spinecor Manufacturer's home page - but i did go looking for Case Study #4. Have not found it yet - but did find a case study #1. The after treatment xray of this case is definitely out of brace (or the metal snaps in the pelvic belt/base would show up). What is seen in this xray is a pelvic shield, used in all xrays of young folks to protect them from radiation. Case study one states: Patient's postural correction and Cobb angle reduction have been maintained three years post bracing. SpineCor Brace wearing ceased 3 June 1999 after 15 months of wear.

Case study one shows first, an out of brace xray (with pelvic shield) - then inbrace xrays (you can tell its in-brace because you can see the pelvic belt metal snaps along with the pelvic shield - i can identify this because i wear the same pelvic base). The last xray is out of brace with only the pelvic shield (and wording indicates that it is taken 3 years post treatment).

Would send the web link but it will only revert back to the home page, as the one you posted does. How does this information compare to Study #4?

I do wish the Manufacturer's web site was a bit easier to navigate (and copied web links would go directly to the information we try to share).


Case Study #1 is found under:
Patient Information (English version)
Spinecor Treatment - Overview
Click on: case study

[Ballet Mom]

Hi Mamamax,

When I go to the Case Studies page, I have links for four case studies, one underneath the other. Yes, it's frustrating that you can't link directly to the page you want.

[mamamax]

Hi Ballet Mom ~

Agree 100% ... the art of sharing links could be improved at the manufacturer's site. I did go outside searching (on the web) and found a Case Study #4, is this it? http://www.spinecorporation.com/English/CaseStudies/case4.htm

If so - this is rather a poor representation ( i think) - Case Study #1 (within the manufacturer's web page) is much clearer. The Case Study #4 that i found looks like some poor quality films. View one is definitely out of brace with pelvic shield - View two definitely in brace - View three and four are also out of brace. View four is truly low quality but those pelvic base snaps would appear even in a poor quality film (like view two). Not real impressive given the film quality - imagine they keep it up as it is representative of a 5 year follow up.

Can you give me a step-by-step instruction to the manufacturer's case study page (English version) .. i'm having great difficulty finding it.

[Pooka1]

:eek::eek::eek::eek:

Case #4, alone and all by itself, engenders doubt about the claims of Spinecor.

And this is in keeping with the experience of one among us.

I now understand why their results are not believed by many in the orthopedic surgical community.

[mamamax]

Well #4 isn't really out there all by itself (re: posts # 42-45) - it is within the manufacturer's web pages somewhere - just difficult to find. The web link does indicate this is within the manufacturer's web page by reading the address (spinecorporation.com/engl...dies/case4.htm). All four can be pulled up this way off site .. question is how do we get there while on site (well, is my question anyway). Ballet mom has found the case study page which has case studies #1, #2, #3, and #4 ... mamamax is not so good at finding that page is all. Guess my orthopedic specialist was better at finding such as well - he recommending this brace for me. Technology is - our greatest challenge (a wise man once told me, think he is correct).

[Pooka1]

Well #4 isn't really out there all by itself (re: posts # 42-45) - it is within the manufacturer's web pages somewhere - just difficult to find.

I didn't mean it was unlinked and physically "out there."

I meant you don't need much more evidence to doubt the published Spinecor results as some orthopedic surgeons do. One among us was a victim of this seemingly obvious mis-measurement. Multiply that times every patient and you can easily dismiss the Spinecor literature.

There is likely a very good reason why folks not associated with Spinecor can't duplicate Spinecor's results. I'd say it's because these non-Spinecor researchers are actually measuring the in-brace and post-brace radiographs honestly and accurately.

[mamamax]

I've been told (by specialists throughout the years) that cob angle measurements can often vary between one practitioner and another. I don't honestly know why that is. I do know that my Spinecor pre-brace measurement was consistent with that of my orthopedic specialist's. My Spinecor provider doesn't mind working with my orthopedic specialist throughout my treatment process - think that is indicative of a certain high standard of ethics. I do, truly, feel for anyone who has been victimized by cob angle mis-measurement. Did this happen to a Spinecor patient?

[Pooka1]

Did this happen to a Spinecor patient?

Yes, per the report.

The in-brace radiographs were measured by the poster and another orthopedic surgeon. The Cobb angle from the poster agreed with the second orthopedic surgeon and both disagreed with the measurement from the Spinecor designers.

This is significant enough that I think I will email it to our orthopedic surgeon as a confirmation of the suspicions he said were held in the orthopedic community.

ETA: the difference was well beyond the expected inter-operator error so we can't ascribe it to that.

[mamamax]

I'm trying to understand what happened here. Are you saying - a Spinecor patient went to an orthopedic surgeon and was in someway harmed by virtue of the fact that the Spinecor providers (in brace) measurement was wrong?

[Pooka1]

I'm trying to understand what happened here. Are you saying - a Spinecor patient went to an orthopedic surgeon and was in someway harmed by virtue of the fact that the Spinecor providers (in brace) measurement was wrong?

Yes, to the tune of a few thousand dollars.

[mamamax]

Why didn't the surgeon do his own measurement (i wonder)? I know my specialist would do his own, if surgery were to be the next step. Maybe i am not following this right?.

[Pooka1]

1. Keep reading. Keep researching. Remain focused. Look deeper.
2. USA physicians and business entrepreneurs are not waiting in line to market, sell, and recommend SpineCor for their patients, adult or adolescent--this is the point I was trying to make by mentioning Canada and the UK.
3. No evaluations and fittings the same day. How many times do you see a physician for a procedure and he or she just happens to have 3-4 hours to do the procedure that very day?

Joe's role is to provide us with up-to-date accurate information about all modalities, to maintain civility amongst members, and to keep us informed. It is not Joe's role, as President, whether a patient, too, or not, to endorse or dispel any one type of treatment.

Can we call you the Deep Throat of the group? Please? :D

[Pooka1]

Maybe i am not following this right?

I can confirm that.

This is very simple. You are avoiding the obvious conclusion.

[Pooka1]

How many times do you see a physician for a procedure and he or she just happens to have 3-4 hours to do the procedure that very day?

Or have a surgeon respond in real time to email.

Good points you make.

I am wondering at this point if any non-Spinecor surgeons take Spinecor seriously.

And I have to add that if there is alleged widespread mis-measurement of Cobb angles that was published in journal articles, there needs to be retractions of every paper allegedly involved. And any alleged parties involved in alleged mis-measurements should not be published again, on any topic.

The central requirement in science is intellectual honesty. Everything rests on that bedrock.

[mamamax]

I can confirm that.

This is very simple. You are avoiding the obvious conclusion.


Well i'm not trying to avoid any obvious conclusion - i would like a straight answer.

You said harm was done to a Spinecor patient due to provider error in cobb angle measurement. I would like to know what that harm was - in detail.

[Pooka1]

Well i'm not trying to avoid any obvious conclusion

I am one to throw myself on my sword at the least hint of opacity in my writing.

But I don't need to do that here.

Try re-reading the thread or have someone explain it. There is no point in rewording the obvious.

ETA: "There are none so blind as those who will not see."

[mamamax]

My original question:


I'm trying to understand what happened here. Are you saying - a Spinecor patient went to an orthopedic surgeon and was in someway harmed by virtue of the fact that the Spinecor providers (in brace) measurement was wrong?
Edit/Delete Message

Your answer:

Yes, to the tune of a few thousand dollars.

Conclusion - none can be made - there are not enough details

[Pooka1]

Mamamax, none of this is what actually matters to someone like you.

Getting some pain relief is or should be your goal. As Linda said, that will keep you out of surgery, not a temporary in-brace reduction of your curve which may or may not even be real given what we are learning.

In other words, forget Cobb angles and monitor your pain. I think Spinecor, in the end, might be effective at pain relief in adults. I don't believe any other claims at this point will pan out.

[mamamax]

Of course it matters to me

[concerned dad]

The person Sharon is talking about above is my daughter.
The details are correct except for the part about another orthopedic doctor remeasuring the xrays. The other doctor looked at my measurements and said they appear correct. He did not remeasure the angle.
Small detail but worth noting.

Even with the discrepancy, I would have kept my daughter in the brace had there been some reasonable in-brace correction. There was not.

Personally, In My Opinion, I have to dismiss the data that these folks published as being questionable.

But I still believe the brace holds promise for adults like yourself and for many kids, particularly those who are young. But I would advise parents of kids to have a look at the inbrace xrays and compare them to the pre-brace xrays. (This can be done at the first visit unlike "deep throats" suggestion) I have reservations, based on anecdotal evidence here, and Weiss's paper, that the brace may fail to hold the curve during the peak growth stage. The SpineCor thread has been going on for a while now and I dont recall reading about anyone being successful through the growth spurt with the brace.

[Pooka1]

That was the thing that got me. Invented in Canada? I never knew that was a bad thing. :confused:

It is not. My horse and three of my microswine are Canadian Nationals. Top shelf animals!

I think that comment from Deep Throat should have carried more explanation lest it be viewed as something s/he didn't mean. That is, it was easily misinterpreted.

[Qikdraw]

It is not. My horse and three of my microswine are Canadian Nationals. Top shelf animals!


Well I get what a horse is, but what is a microswine? :confused:

Do your animals say 'eh!'? :D

[Pooka1]

Well I get what a horse is, but what is a microswine? :confused:

Do your animals say 'eh!'? :D

Microswine = guinea pigs. I coined the term. :D

I have five microswine at the moment. If they could talk I'm sure they would say, "eh!" :)

I liked my horse so much I flew him from Alberta to the US. He arrived 22 hours later, door to door, flying to NY first and then immediately onto a van to NC. He was a very tired boy! Horses have to balance the whole time; they don't lay down on planes or vans. He was whooped.

[mamamax]

The person Sharon is talking about above is my daughter.
The details are correct except for the part about another orthopedic doctor remeasuring the xrays. The other doctor looked at my measurements and said they appear correct. He did not remeasure the angle.
Small detail but worth noting.

Even with the discrepancy, I would have kept my daughter in the brace had there been some reasonable in-brace correction. There was not.

Personally, In My Opinion, I have to dismiss the data that these folks published as being questionable.

But I still believe the brace holds promise for adults like yourself and for many kids, particularly those who are young. But I would advise parents of kids to have a look at the inbrace xrays and compare them to the pre-brace xrays. (This can be done at the first visit unlike "deep throats" suggestion) I have reservations, based on anecdotal evidence here, and Weiss's paper, that the brace may fail to hold the curve during the peak growth stage. The SpineCor thread has been going on for a while now and I dont recall reading about anyone being successful through the growth spurt with the brace.

Thank you CD.

Sending you a PM

[Pooka1]

Glad this has been taken to PMs.

I was having that sinking feeling again that I was on Candid Camera with the last bit of back and forth. :eek:

[mamamax]

Did i ever tell you that i've been hit by lightening seven times?

Once when i was minding my own business.

[from the movie - Benjamin Buttons]

[MichelleK]

I would like to add my two cents here, uh oh! No seriously, I am an adult trying the Spinecor brace & without going into my results thus far(off topic) I'd like to say that the only claim told to me by the Dr. fitting me is that the brace has been shown to control/reduce pain in adults. Never claimed to change curve whatsoever. In fact, my x rays in & out of brace the day I was fitted had same curve. So, they don't try to claim it will change curve angles as far as what I was told. I was glad he was honest when he took the xray in brace & the curve angles were the same.

[mamamax]

Hi NMFB ~

It is interesting that so many posts on this adult non surgical forum have to do with Spinecor. Many older adults are in a lot of pain and in need of remedy which for very many, the Spincor brace provides. I do not believe my providers are considered controversial (in the medical communities in which they move), but they are very experienced in treating adult patients (over the last five years).

A medical doctor did in fact recommend/prescribe this brace for me (orthopedic specialist), after careful review and contact with my provider. Chiropractors in the US, to my knowledge, are not diagnosing per se - but they are fitting and monitoring (many along with one's specialist) ... perhaps because this profession is more willing to spend the time required to learn about this brace (it is not just a slap it on and be done with it affair). My providers have worked closely with Rivard and Colliard - i have no idea if the Canadian surgeons are treating adults - but i suspect they may be ... certainly i have read that they are treating skeletally mature spines (direct contact with them would be the best source of this information).

There are indeed two braces at this point (adult/adolescent). They are both designed to do the same thing (i.e., both are PRBs). Protocol and treatment goals at this time do differ. The adult brace became available 9 days following my fitting with the then current adolescent brace. The new adult one was offered to me (also here good to note that treatment outcome was not seen for me to be effected either way). My choice became the adolescent brace and was determined as a comfort based decision only. The only difference in the way both braces are designed is - the lower piece (pelvic belt for adolescents - shorts for adults). The brace has always been a postural rehabilitation device (PRB). Studies take time and funding, Spinecor for adults is in its infancy in this respect but based on many real life experiences, i believe we will see some interesting documentation as the years go by. Here is one:

A Retrospective Study of twenty three adults treated for scoliosis using the Spinecor Orthosis.
Deutchman, G.; Lamantia M.,; Indelacato J.; Raykhman M.:
From 4th International Conference on Conservative Management of Spinal Deformities Boston, MA, USA. 13–16 May 2007.
Scoliosis 2007, 2(Suppl 1):S23doi:10.1186/1748-7161-2-S1-S23

And in answer to your next to last paragraph - yes, parents will always seek remedy for their children. There is more evidence that this works well for adolescents than there is currently for adults (it has been used for them much longer). Of course not all treatments work for all people (adults or adolescents), but Spinecor has proven useful to many (with experienced providers). Post #1 gives better explanation of all i have to say.

In regard to your final paragraph - i thank you for wishing me well on my journey (and other adults who seek this remedy).

You stated: I believe that I have done my best by offering my advice. I do not feel that sharing my knowledge and experience regarding SpineCor would be of any benefit to anyone. It did not work--end of story.

As not all treatments work for all people - it would be good if you would share your personal experience with us in the interests of both shared experience and increasing an ever expanding NSF forum knowledge base. Failure rates (and why) .. also valuable experience for us all to know and understand. I'm sorry it did not work for you - someday maybe, one treatment for all. Till then we should share what we know - and i hope you will share what you have learned in more detail. Best to you.

[Pooka1]

I wish all you adults well. I believe that I have done my best by offering my advice. I do not feel that sharing my knowledge and experience regarding SpineCor would be of any benefit to anyone. It did not work--end of story.

Hi.

One the one hand, one person's experience really is not predictive of anything.

On the other hand, if you are aware of large-scale failure of the brace that is being kept under wraps then that would benefit folks.

Just my opinion.

And if your point about surgeons versus chiros prescribing Spinecor to adults where the surgeons are honest about it not changing curves permanently whereas chiros may not be honestly admitting this then that needs pointing out also.

[Pooka1]

I do not feel that sharing my knowledge and experience regarding SpineCor would be of any benefit to anyone. It did not work--end of story.

Do you mean that it just did not work for you or do you have information that there is widespread failure of the brace for AIS curve stabilization or adult pain relief known to the manufacturers that they are sitting on?

[mamamax]

I would like to add my two cents here, uh oh! No seriously, I am an adult trying the Spinecor brace & without going into my results thus far(off topic) I'd like to say that the only claim told to me by the Dr. fitting me is that the brace has been shown to control/reduce pain in adults. Never claimed to change curve whatsoever. In fact, my x rays in & out of brace the day I was fitted had same curve. So, they don't try to claim it will change curve angles as far as what I was told. I was glad he was honest when he took the xray in brace & the curve angles were the same.

Hi MichelleK - my provider/doctor also did not claim that treatment would permanently reduce curvature. My orthopedic specialist, myself, and provider, were shooting for pain relief - and i can truly say, that the relief i have found is beyond expectation.

I did experience some immediate cobb angle reduction (in brace) - but that is just me - such is not the adult treatment goal (according to the manufacturer's web site at this time, or among reputable, experienced, and ethical providers in the US of this brace for adults).

I did read a 2008 report that stated - in regards to adolescent scoliosis (non congenital) .. that 9 degrees of the curvature was attributable to postural influences - and that no similar quantification has yet been agreed upon for adults. As the Spinecor brace is a postural rehabilitation brace (designed to progressively rehabilitate posture) it may certainly be that this old spine that belongs to me may indeed have some areas still rehabilitatable. Too early to tell of course, yet somewhat promising, the idea - based on the report out of Italy.


Reference:
Adult scoliosis can be reduced through specific SEAS exercises:
Negrini A, Parzini S, Negrini MG, Romano M, Atanasio S, Zaina F, Negrini S.
Scoliosis. 2008 Dec 16;3:20.

Conclusion (in part): A scoliosis curve is made of different components: the structural bony and ligamentous components, and a postural one that counts up to 9 degrees in children, while it has not been quantified in adults.

[mariaf]

joe's role is to provide us with up-to-date accurate information about all modalities, to maintain civility amongst members, and to keep us informed. It is not joe's role, as president, whether a patient, too, or not, to endorse or dispel any one type of treatment.


well said, nmfb!!

[mamamax]

Hi:
I have no inside information, just to set the record straight. I am still seeing some provider web sites making rather unrealistic claims about curve reduction, in adults, as being possible. What are the chances of SpineCor, after centuries and centuries of people trying to understand scoliosis, being the cure? Logically, it does not make sense. I was hopeful, though, at one time.
Not everything works for all people. I wish I had had foresight rather than hindsight--that's all. Find out as much as you can about every aspect of your care. I am not comfortable saying more. It would not be fair in many ways.
NMFB

Hi NMFB ~

Anyone offering complete cure (at this time) is both misled and misleading. There are various treatments which offer some remedy (defined as a lessening of effect) .. none, however offering complete cure - there simply isn't one cure for all forms of scoliosis at this time, for either children or adults. Even remedy is not one size fits all and as Joe states in posting #1: While we may have common unity in the characteristics of our spinal deformity, our individual situation and experiences are unique.

Collectively, we have available few remedies that may work well for some, perhaps even many, but always - not for all. And while some remedies may lessen the effect of our individual conditions, there are no complete cures - even after all these centuries.

I have not seen a reputable Spinecor brace provider that advertises complete cure and if you see one that does (or any other method offering complete cure) - please let me know privately if you are not comfortable doing so publically. Such advertisements (complete cure) are what is unfair, for so many reasons. Even the best remedies often require more remedy and/or maintenance of some kind.

You are right in stating: Find out as much as you can about every aspect of your care. That is wise advise for all regarding any and all treatment options one may seek - for any and all conditions.

All the best on your personal journey NMFB - sincerely. If there is more you feel we should know, please share with us that we may be aware.

[Pooka1]

Anyone offering complete cure (at this time) is both misled and misleading.

It's possible to be completely misleading whilst not promising a complete cure.

For example, it would be misleading to claim the possibility of just reducing the curve of an adult spine permanently.

[mamamax]

The word permanent (in terms of cobb angle reduction for any treatment) is definitely misleading.

The Spinecor manufacturer does state that some may experience small cobb angle reduction (they are very conservative in their wording). And as some have in fact done this, i would not consider the statement misleading. No one in the Spinecor network (so to speak) has ever used the word permanent to my knowledge. As study continues i believe what is looked for (and will continue to be looked for) is stable maintenance of such reduction when it occurs (talking 25 years and more down the road).

Such things (cobb angle reduction without surgery) while not the norm, does exist. Example Martha Hawes (fellow scoliosis patient and research scientist) 40% reduction in magnitude of Cobb angle, which had been stable for 30 years. Even she does not use the word permanent.

Reference:

Reversal of the signs & symptoms of moderately severe idiopathic scoliosis in response to physical methods
Hawes MC, Brooks WJ.
Stud Health Technol Inform. 2002;91:365-8.
PMID: 15457757

This report describes improved signs and symptoms of previously untreated symptomatic spinal deformity in an adult female diagnosed with moderately severe thoracic scoliosis at the age of .7 years. Current treatment initiated at the age of forty included massage therapy, manual traction, ischemic pressure, and comprehensive manipulative medicine (CMM). A left-right chest circumference inequity was reduced by >10 cm, in correlation with improved appearance of the ribcage deformity and a 40% reduction in magnitude of Cobb angle, which had been stable for 30 years. The changes occurred gradually over an eight-year period, with the most rapid improvement occurring during two periods when CMM was employed.

PMID: 15457757 [PubMed - indexed for MEDLINE]

[LindaRacine]

The word permanent (in terms of cobb angle reduction for any treatment) is definitely misleading.

The Spinecor manufacturer does state that some may experience small cobb angle reduction (they are very conservative in their wording). And as some have in fact done this, i would not consider the statement misleading. No one in the Spinecor network (so to speak) has ever used the word permanent to my knowledge. As study continues i believe what is looked for (and will continue to be looked for) is stable maintenance of such reduction when it occurs (talking 25 years and more down the road).

Such things (cobb angle reduction without surgery) while not the norm, does exist. Example Martha Hawes (fellow scoliosis patient and research scientist) 40% reduction in magnitude of Cobb angle, which had been stable for 30 years. Even she does not use the word permanent.

Reference:

Reversal of the signs & symptoms of moderately severe idiopathic scoliosis in response to physical methods
Hawes MC, Brooks WJ.
Stud Health Technol Inform. 2002;91:365-8.
PMID: 15457757

This report describes improved signs and symptoms of previously untreated symptomatic spinal deformity in an adult female diagnosed with moderately severe thoracic scoliosis at the age of .7 years. Current treatment initiated at the age of forty included massage therapy, manual traction, ischemic pressure, and comprehensive manipulative medicine (CMM). A left-right chest circumference inequity was reduced by >10 cm, in correlation with improved appearance of the ribcage deformity and a 40% reduction in magnitude of Cobb angle, which had been stable for 30 years. The changes occurred gradually over an eight-year period, with the most rapid improvement occurring during two periods when CMM was employed.

PMID: 15457757 [PubMed - indexed for MEDLINE]


Martha Hawes' reference to 30 years refers to the amount of time her curve had been stable prior to starting her exercise program, not the amount of time she has maintained correction. She has not published anything that shows that she has been able to maintain the correction.

[LindaRacine]

Agree Q-D .. what difference could it possible make .. find my mind racing around the universe on that one and remain ever clueless.

Also agree that wild claims, for any treatment, are red flags.

Did an Internet search for "permanent" "correction" and "spinecor". Could not find any web pages (including my provider's) that made any statement to the fact that treatment was a permanent correction. I did find many providers taking more cautionary viewpoints: i.e, it was too early to pass judgment on this. So, if anyone finds one please post it - you know, i'll be writing them a nice letter!

Adult curves, i am learning more about them than i wish (#4 & #10):
http://www.ncbi.nlm.nih.gov/pubmed?term=O'Brien+Joseph%5Bau%5D

Noticing too, that when i read studies, i have to give them second and third looks - after seeing just what i want to see


Maxene...

So, were you mistaken when you previously stated "It is also a fact that the Spinecor brace can effect correction and often times that correction can be permanent," or were you again confused about the difference between adults and adolescents? Can you now confirm that no chiropractor has led you to believe that the changes you're seeing might be permanent?

--Linda

[Pooka1]

Martha Hawes' reference to 30 years refers to the amount of time her curve had been stable prior to starting her exercise program, not the amount of time she has maintained correction. She has not published anything that shows that she has been able to maintain the correction.

I was nothing short of shocked to note that Hawes is in fact a full professor at an accredited university.

The reason I was shocked was because of the patent nonsense she wrote relating scoliosis to other things like breast cancer... I'm not remembering the specifics here. Maybe I'm confusing her with someone else?

I can't find the full text of that article but would like to know:

1. What was the starting angle?
2. What was the ending angle?
3. How long has the reduction lasted after 2002?
4. Is there radiographic proof of starting and ending angle?
5. How real is the reduction given you can apparently reduce a curve at least 11* just by standing funny?
6. what ongoing treatment does she need in order to maintain the 40% reduction (if she is still maintaining it)?

[LindaRacine]

I was nothing short of shocked to note that Hawes is in fact a full professor at an accredited university.

The reason I was shocked was because of the patent nonsense she wrote relating scoliosis to other things like breast cancer... I'm not remembering the specifics here. Maybe I'm confusing her with someone else?

I can't find the full text of that article but would like to know:

1. What was the starting angle?
2. What was the ending angle?
3. How long has the reduction lasted after 2002?
4. Is there radiographic proof of starting and ending angle?
5. How real is the reduction given you can apparently reduce a curve at least 11* just by standing funny?
6. what ongoing treatment does she need in order to maintain the 40% reduction (if she is still maintaining it)?
Hi Sharon...

I'm not sure what you mean about what she wrote in terms of a link between scoliosis and breast cancer. (There actually is a link, but it's almost certainly due to an increased amount of radiation exposure from xrays.)

I have never seen anything beyond what she wrote in the foreward to her book, and what's in this abstract:

http://www.ncbi.nlm.nih.gov/pubmed/15457757?ordinalpos=9&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

If anyone has access to the full paper, I'd definitely be interested in seeing it.

In regard to reduction of curves without surgery, I think I mentioned a few weeks ago, that there's a yoga instructor (Elise Browning Miller) who has reduced her curves significantly (I've personally seen the before and after, although I've never seen her xrays). She has maintained the correction for many years. But, this is a woman who practices many hours of yoga every day. I believe that if she were to stop the yoga, her curves would return to their original magnitude (or potentially worsen).

--Linda

[Pooka1]

Linda, I believe it was Tonibunny who critiqued the claims Hawes made. They were wacky... I'll try to find that post. I think I'm misremembering the breast cancer thing.

I found the 2002 paper by Hawes and Brooks:

http://www.scoliosis.org/resources/spinalconnection_spr2002.pdf

Haven't read it yet.

[LindaRacine]

Thanks Sharon. Unfortunately, the full text doesn't really give us a lot more information. I had some phone conversations with Martha around the time that she was publishing her book. She described the treatment as "intensive," but wouldn't discuss any other specifics. (She was trying to convince me that scoliosis curves could be permanently reduced. As you can imagine, she didn't get very far.)

--Linda

[Pooka1]

Thanks Sharon. Unfortunately, the full text doesn't really give us a lot more information. I had some phone conversations with Martha around the time that she was publishing her book. She described the treatment as "intensive," but wouldn't discuss any other specifics. (She was trying to convince me that scoliosis curves could be permanently reduced. As you can imagine, she didn't get very far.)

--Linda

In the paper she claims to have done 4 hours of therapy a day for several years.

I find that incredible.

[LindaRacine]

4 hours a day for the rest of one's life? I guess there might be some who think that's doable. I'm not one of them.

--Linda

[Pooka1]

4 hours a day for the rest of one's life? I guess there might be some who think that's doable. I'm not one of them.

--Linda

No she only did the 4 hours/day from 1993 to 1997.

"From January 1993, one of the
authors (WJB) provided instruction,
support, and evaluation of posture and
movement. Sustained pressure applied
directly to muscle spasms, or manual
traction to stretch the torso,was used
by the patient to relieve pain as needed
( 4 h daily through 1997).These methods
were supplemented with massage
therapy monthly in 1993 and 1994."

[mamamax]

Maxene...

So, were you mistaken when you previously stated "It is also a fact that the Spinecor brace can effect correction and often times that correction can be permanent," or were you again confused about the difference between adults and adolescents? Can you now confirm that no chiropractor has led you to believe that the changes you're seeing might be permanent?

--Linda

Linda - did i use the word can or did i use the word may [there is a big difference] and did i use the word "permanent"?? - if so, i was in error and fall on my sword!! If that is a verbatim quote - all i can say is that it may have been in the heat of great (and emotional) debate (when possibly even over-medicated), resulting in a poor choice of words. It is not like me to use the word can, in such a statement - more like me to use the word may (in opinionated speculation), and very unlike me to use the word permanent. If i did ... my apologies to you, and to the entire world. Thought we cleared this up a while back - maybe not, hope it is clear now.

Certainly no medical professional (chiropractor or otherwise) has ever ever ever led me to believe that any treatment would effect permanent and lifelong cobb angle reduction (many orthopedic specialists have suggested, for me, that no treatment may result in the possibility of life long progression and also suggested that fusion from top to bottom of my spine would also not guarantee permanent cobb angle reduction (explaining to me that curvature may progress even following fusion, requiring revision) - nor has any orthopedic specialist ever guaranteed that surgery, for me, would eliminate pain). So there we have it - the rather sad truth about scoliosis .. there are no guarantees.

I've never been confused between adult and adolescent curvatures. Adolescent spines are still growing - Adult spines have ceased to grow, however they may continue to progress in curvature.

[Pooka1]

Hi:
I neither used the words "permanent," nor "can" in my posting, but I did hear these words somewhere! The brace I purchased was called a Dynamic Scoliosis Correction Brace, or sometimes the SpineCor Dynamic Brace.
This is before the backpedding began.
NMFB

Have you considered sueing to get your money back?

If they misrepresented the brace then that's fraud, no?

[LindaRacine]

I got it. I was just extrapolating to the discussion of whether or not a curve reduction could be permanent. In order for that to happen, I believe one would have to continue the intensive exercise schedule for the rest of one's life.

--Linda

[MichelleK]

I would have to agree. when speaking to my dr about spinecor & scroth, he said that scroth works for alot of people, but it requires alot of dedication to the exercises & if those are stopped, the correction is lost. For those who have the time & dedication though, I'd say it's probably worth it.

[Pooka1]

I would have to agree. when speaking to my dr about spinecor & scroth, he said that scroth works for alot of people, but it requires alot of dedication to the exercises & if those are stopped, the correction is lost. For those who have the time & dedication though, I'd say it's probably worth it.

In other words, it doesn't permanently reduce curves.

No different than my daughter's brace (which she just stopped wearing). She got a 100% correction with that (in brace), MORE than Schroth ever got I bet. But not permanent.

Does Weiss claim Schroth permanently reduces curves? If not then no problem.

[mamamax]

Hi:
I neither used the words "permanent," nor "can" in my posting, but I did hear these words somewhere! The brace I purchased was called a Dynamic Scoliosis Correction Brace, or sometimes the SpineCor Dynamic Brace.
This is before the backpedding began.
NMFB

Hi NFMB ~

Your saying that yours was called a Dynamic Scoliosis Correction Brace, got my curiosity - and i did come across an article from 2006 in the American Academy of Orthotists & Prosthetists (written by an orthotist from the UK). In this article the orthotist refers to Spinecor as being a Dynamic Corrective Bracing system. Paragraph Two:

Flexible Dynamic Corrective Bracing (SpineCor®1) is principally prescribed for Idiopathic Scoliosis patients with a Cobb angle between 15° and 50° and Risser sign 0 to 2. The brace is fitted on the patient in accordance to a sub-classification of the traditional SRS2 definition of curve types. The brace is prescribed to be worn by the patients 20 hours per day until they have reached maturity, with radiological evaluations performed prior to and immediately following the fitting of the brace, and every 4 to 6 months thereafter.

Kind of reads as if at that time, in the UK at least, that this is how the brace was referred to. Terminology can change throughout the years - the field of Information Technology (IT) is a good example of that (many terms changing throughout the years) . Were you fitted around that time frame?

Anyway - a very interesting article:
http://www.oandp.org/publications/jop/2006/2006-14.asp

[LindaRacine]

Linda - did i use the word can or did i use the word may [there is a big difference] and did i use the word "permanent"?? - if so, i was in error and fall on my sword!! If that is a verbatim quote - all i can say is that it may have been in the heat of great (and emotional) debate (when possibly even over-medicated), resulting in a poor choice of words. It is not like me to use the word can, in such a statement - more like me to use the word may (in opinionated speculation), and very unlike me to use the word permanent. If i did ... my apologies to you, and to the entire world. Thought we cleared this up a while back - maybe not, hope it is clear now.

Certainly no medical professional (chiropractor or otherwise) has ever ever ever led me to believe that any treatment would effect permanent and lifelong cobb angle reduction (many orthopedic specialists have suggested, for me, that no treatment may result in the possibility of life long progression and also suggested that fusion from top to bottom of my spine would also not guarantee permanent cobb angle reduction (explaining to me that curvature may progress even following fusion, requiring revision) - nor has any orthopedic specialist ever guaranteed that surgery, for me, would eliminate pain). So there we have it - the rather sad truth about scoliosis .. there are no guarantees.

I've never been confused between adult and adolescent curvatures. Adolescent spines are still growing - Adult spines have ceased to grow, however they may continue to progress in curvature.

It was a direct quote from one of the posts that you deleted, but which Pam saved offsite.

[mamamax]

Boy those were the days .. i have those and will check the context - as i said, if it is a verbatim quote then i fall on my sword and apologize to the entire world.

In the mean time, I would also agree Linda, that any reduction in cobb angle by any means is going to require some kind of care and/or maintenance. How much care and/or maintenance - certainly becomes a consideration when making individual treatment choices. For me 30 minutes a day is doable, preferably something more like three times a week would be better (and that would be similar to general health care guidelines in terms of exercise). Some people are far more active spending an hour or more at the gym daily - not for this kid, though i do admire those who can.

Hypothetically - IF at the end of a two year protocol with my PRB, i were to experience some cobb angle reduction (as some adults are doing) that resulted in significant pain reduction - would i sacrifice 30 minutes a day to maintain it .. yes, i would - gladly. Postural rehabilitation is an interesting thing, in the SEAS report below, the Italians establish: A scoliosis curve is made of different components: the structural bony and ligamentous components, and a postural one that counts up to 9 degrees in children, while it has not been quantified in adults. What is the quantification for adults i wonder, and how may knowing that help establish treatment towards pain reduction.

Martha Hawes (the research scientist and scoliosis patient) did in fact engage in an intense program that few would be able follow in order to achieve her 40% cobb angle reduction (significance being that it could even be done). Her greatest reductions came about under the care of an osteopath. What her maintenance program is i don't know but i do intend to buy her book (third edition available at NSF) as well as one i came across recently regarding Schroth. You got to speak to her? I'm pea green with envy!

Spinecor is not the average brace as it incorporates physical therapy just in the daily wearing. From the manufacturer's web site: Physical therapy is not a necessity in the Spinecor program (Spinecor itself may be considered a physiotherapy 20 hours out of 24. This comes from introductory comments about the brace in regards to treatment - and this statement is general information that would apply to either child or adult as the statement is based upon the brace design.

All of this facinates me, and along with another article written by both Martha and Joe O'Brien (below) .. i just find myself thirsty for everything i can learn - i do stay up late reading a lot considering what combination of programs may get me best through the years to come as maintenance (toward pain reduction) will certainly be an issue.


References:

Spinecor Introduction (Manufacturer's Web Site):
http://www.spinecorporation.com/English/ScientificInformation/Introduction.htm


Adult scoliosis can be reduced through specific SEAS exercises: a case report. Scoliosis. 2008 Dec 16;3:20.
Negrini A, Parzini S, Negrini MG, Romano M, Atanasio S, Zaina F, Negrini S.
ISICO (Italian Scientific Spine Institute), Via Roberto Bellarmino 13/1, 20121 Milan, Italy.
http://www.ncbi.nlm.nih.gov/sites/entrez
(type in Scoliosis SEAS - publication #2)

The Transformation of Spinal Curvature into Spinal Deformity
Hawes MC, O'brien JP.
Scoliosis. 2006 Mar 31;1(1):3.
PMID: 16759413-
http://www.ncbi.nlm.nih.gov/sites/entrez
(type in Martha Hawes in the search - Publication #9

A Retrospective Study of twenty three adults treated for scoliosis using the Spinecor Orthosis.
Deutchman, G.; Lamantia M.,; Indelacato J.; Raykhman M.:
From 4th International Conference on Conservative Management of Spinal Deformities Boston, MA, USA. 13–16 May 2007.
Scoliosis 2007, 2(Suppl 1):S23doi:10.1186/1748-7161-2-S1-S23
http://www.scoliosisjournal.com/content/2/S1/S23

Review of the Literature: Non - operative Scoliosis Treatment
Marc J. Lamantia, D.C., and Gary A. Deutchman, D.C.
TAC, Cover Stories , Volume 31, Issue 4
Published: The American Chiropractor (2009)
http://theamericanchiropractor.com/articledetail.asp?articleid=1115&category=8

[LindaRacine]

Boy those were the days .. i have those and will check the context - as i said, if it is a verbatim quote then i fall on my sword and apologize to the entire world.

http://www.box.net/shared/zr0akpi0l4
IF at the end of a two year protocol with my PRB, i were to experience some cobb angle reduction (as some adults are doing)

Where's the proof that any adult wearing a Spinecor brace has had a permanent reduction in curves? You may not claim such things without proof. Next time, your post will be removed.

Martha Hawes (the research scientist and scoliosis patient) did in fact engage in an intense program that few would be able follow in order to achieve her 40% cobb angle reduction (significance being that it could even be done). Her greatest reductions came about under the care of an osteopath.
Again, there's zero proof that the reduction she got from her intensive programs held when the program was ceased. If the reduction was permanent, I'm fairly certain we would have heard of it by now.

You'll love her book, she spends her time attacking all things surgical.

[mamamax]

I did make that comment - it is the one and only time i ever used the word permanent in relation to cobb angle reduction in an adult spine.

it was in answer to the following statement:

While Spinecor may help some adults manage pain, there is no way ANY brace will correct a curve in a skeletally mature adult. It's impossible. In brace corrections are not permanent. Sorry.

My response begins:

I would like to say that Spinecor has proven the exception to the rule regarding bracing in that it does effect change in the adult mature spine - perhaps not always and perhaps not in every case (just as surgery is not the answer in every case), but certainly more than not for those adults who follow protocol and for those without extenuating circumstances of some kind - there is change, and sometimes the change is impressive. So there are exceptions to every rule - and this exception is only coming to light over the last five years.

In the next paragraph i make the offending statement. I meant to use the word impressive (not permanent) as in the first paragraph above. Made a mistake - sorry. What else can i say?

I was thinking (but not typing):

It is also a fact that the Spinecor brace can effect correction and often times that correction can be impressive. Of course today i would not use the word correction, i would use the term cobb angle reduction.

As for studies showing cobb angle reduction, there are few as research takes time money and willing participants (five years is not a lot of time in the research world) - here is one:

A Retrospective Study of twenty three adults treated for scoliosis using the Spinecor Orthosis.
Deutchman, G.; Lamantia M.,; Indelacato J.; Raykhman M.:
From 4th International Conference on Conservative Management of Spinal Deformities Boston, MA, USA. 13–16 May 2007.
Scoliosis 2007, 2(Suppl 1):S23doi:10.1186/1748-7161-2-S1-S23
http://www.scoliosisjournal.com/content/2/S1/S23

I did make an error in writing - does anyone else ever do this, make an error?

[LindaRacine]

I did make that comment - it is the one and only time i ever used the word permanent in relation to cobb angle reduction in an adult spine.

it was in answer to the following statement:

While Spinecor may help some adults manage pain, there is no way ANY brace will correct a curve in a skeletally mature adult. It's impossible. In brace corrections are not permanent. Sorry.

My response begins:

I would like to say that Spinecor has proven the exception to the rule regarding bracing in that it does effect change in the adult mature spine - perhaps not always and perhaps not in every case (just as surgery is not the answer in every case), but certainly more than not for those adults who follow protocol and for those without extenuating circumstances of some kind - there is change, and sometimes the change is impressive. So there are exceptions to every rule - and this exception is only coming to light over the last five years.

In the next paragraph i make the offending statement. I meant to use the word impressive (not permanent) as in the first paragraph above. Made a mistake - sorry. What else can i say?

I was thinking (but not typing):

It is also a fact that the Spinecor brace can effect correction and often times that correction can be impressive. Of course today i would not use the word correction, i would use the term cobb angle reduction.

As for studies showing cobb angle reduction, there are few as research takes time money and willing participants (five years is not a lot of time in the research world) - here is one:

A Retrospective Study of twenty three adults treated for scoliosis using the Spinecor Orthosis.
Deutchman, G.; Lamantia M.,; Indelacato J.; Raykhman M.:
From 4th International Conference on Conservative Management of Spinal Deformities Boston, MA, USA. 13–16 May 2007.
Scoliosis 2007, 2(Suppl 1):S23doi:10.1186/1748-7161-2-S1-S23
http://www.scoliosisjournal.com/content/2/S1/S23

I did make an error in writing - does anyone else ever do this, make an error?




Regarding the study that you reference... .For the record, these changes are while the patient is still being treated. They got, at best, about 15 degrees of correction. I guess I shouldn't complain about my high insurance premiums, so long as people have access to expensive treatment that results in 15 degrees of improvement, and which will be lost when the treatment is discontinued.

[mamamax]

Regarding the study - kind of looks like its two years into treatment? Anyway - treatment for adults has only been used for the last five years .. suspect we will see more in the near future. A five year study of the same adults should be due 2011 or so? It will be interesting what may be provided over the next decade.

We were talking about the logic of care and/or maintenance earlier (of any treatment resulting in cobb angle reduction) ... certainly this, in my case will be factored into the equation two years down the road. I don't know what other adult Spinecor patients may do - but i will be finding out.

I'm not too sure what to think about the insurance comment, i never think in terms of what my premiums may afford for others - not much i would think, or not enough to gripe about if others are finding remedy.

You know, earlier you made a statement about Martha Hawes: You'll love her book, she spends her time attacking all things surgical. I think Martha is just looking for different options - like myself and many others here in the non surgical threads. Many of us require that option - it is good that there are those researching such things for those of us that require (or even just desire) non surgical remedy. Certainly we all collectively need all the help we can get.

[MissEmmyF]

You know, earlier you made a statement about Martha Hawes: You'll love her book, she spends her time attacking all things surgical. I think Martha is just looking for different options - like myself and many others here in the non surgical threads. Many of us require that option - it is good that there are those researching such things for those of us that require (or even just desire) non surgical remedy. Certainly we all collectively need all the help we can get.

Yeah, thank goodness for that...you certainly won't find any kind of help (or even positive reinforcement) on this forum for exploring anything non-surgical.

[LindaRacine]

Hi MissEmmyF...

If you'll look at all of the posts, I think you'll see support for alternative treatments in terms of pain management. It's only when the false claims of curve improvement come into play, where you'll see debate.

Regards,
Linda

[Qikdraw]

Yeah, thank goodness for that...you certainly won't find any kind of help (or even positive reinforcement) on this forum for exploring anything non-surgical.

I don't think thats a fair statement. There is a lot of support for whatever helps you out, and each person responds differently. What people do pounce on is misinformation, and there are reasons for that. People searching for answers deserve to get all the information they can to help them out, however we have to make sure that information is as truthful as it can be. The only attacks on treatments like Schroth (for example) are in the wild claims some of its practitioners have made, not all of them to be sure, but they are out there. Also the concern that once you stop the treatments your pain/curve may come back, but people are supportive that if it works to get rid of your pain, then you should do whatever works, and that there is support for.

Each of us is different and we will all respond to different treatments. We also have different views on treatments, I don't like Chiropracters at all, I think they are 90% cheats and liars, but then I've had first hand experience in chiros telling me they could have fixed my spine without surgery, and if you look at my before xrays you'll see that is completely wacky. On top of that my wife did insurance defence and dealt with a lot of chiro reports where all it is is padding the bill so the settlement is bigger. However if someone gets pain reduction from a chiro then go for it, just find a good one that won't lie to you.

Just my two cents... :)

Brad

[Pooka1]

Yeah, thank goodness for that...you certainly won't find any kind of help (or even positive reinforcement) on this forum for exploring anything non-surgical.

If you think this then you haven't been following along.

[MissEmmyF]

i understand what you're saying, but my overall feeling after being on this forum for a couple months now is it's waaaaaay more supportive to people going through surgery rather than people (like me) who are exploring alternative methods for pain control. someone going through surgery is met with a lot of "good lucks" etc., whereas someone exploring a viable alternative method usually gets talked down to, asked purposely demeaning questions, or doesn't get responded to at all, etc. it's happened to me before.

the general consensus on here is not "let's be supportive of this person trying an alternative method"...it's more along the lines of "let me bark 5 trillion facts as this person to make sure they know they aren't going to succeed with their alternative method"...even though each person's idea of "success" is different.

i'm not saying surgery isn't the only answer in many cases. i just think it seems like the ONLY answer based on this forum.

[MissEmmyF]

If you think this then you haven't been following along.

i've been following along just fine, thanks.

[Pooka1]

i'm not saying surgery isn't the only answer in many cases. i just think it seems like the ONLY answer based on this forum.

Whether or not surgery is the only answer either is or isn't based on fact and experience. It has ZERO to do with the wish of some patients to avoid it at all costs.

The reason there is push-back on alternative treatments is that there is more charlatanry in the field than legitimate approaches. I feel sorry for the legitimate purveyors of PT and such who do not promise the impossible but instead are realistic with folks. And I feel sorry for the patients who have to search through the haystack of nonsense to find the few legitimate needles.

Surgeons take an oath to be ethical. I doubt many of these alternative pushers do.

[MissEmmyF]

Whether or not surgery is the only answer either is or isn't based on fact and experience. It has ZERO to do with the wish of some patients to avoid it at all costs.

The reason there is push-back on alternative treatments is that there is more charlatanry in the field than legitimate approaches. I feel sorry for the legitimate purveyors of PT and such who do not promise the impossible but instead are realistic with folks. And I feel sorry for the patients who have to search through the haystack of nonsense to find the few legitimate needles.

Surgeons take an oath to be ethical. I doubt many of these alternative pushers do.

i fully agree with everything you said except i don't agree that all surgeons take an oath to be ethical.

[Pooka1]

i fully agree with everything you said except i don't agree that all surgeons take an oath to be ethical.

Which surgeons don't?

Can you list their names?

[MissEmmyF]

Which surgeons don't?

Can you list their names?

no, of course not. how would that even be possible?

[Pooka1]

no, of course not. how would that even be possible?

Then how do you know they didn't take the Hippocratic oath?

All licensed doctors that the oath.

[MissEmmyF]

Then how do you know they didn't take the hippocratic oath?

obviously i don't know...i just find it improbable that every single surgeon on the face of the planet has taken a hippocratic oath.

[Pooka1]

obviously i don't know...i just find it improbable that every single surgeon on the face of the planet has taken a hippocratic oath.

Okay but I had no idea were weren't confining the discussion to licensed doctors.

[MissEmmyF]

All licensed doctors that the oath.

even if they have, it doesn't mean they're automatically all ethical.

[Pooka1]

even if they have, it doesn't mean they're automatically all ethical.

Yes there are certainly doctors sued successfully for malpractice. But they are rare. That's one thing folks should research when selecting a surgeon.

At the other end, some of these guys are artists who literally give folks back their life and future like in the case of my daughter.

[MissEmmyF]

Yes there are certainly doctors sued successfully for malpractice. But they are rare. That's one thing folks should research when selecting a surgeon.

At the other end, some of these guys are artists who literally give folks back their life and future like in the case of my daughter.

i agree, i'm not sure how this thread got so off topic.

[Pooka1]

i agree, i'm not sure how this thread got so off topic.

I'm not sure this thread started with a defined topic. :D

[LindaRacine]

Hi MissEmmyF....

I can find plenty of examples of honest, helpful discussion in the non-surgical forum, where people say "good luck." Here's one example:

http://www.scoliosis.org/forum/showthread.php?t=6858

Honestly, it really only gets contentious when false claims are made.

And, while in general, there aren't a lot of people debating the surgery issue, there are certainly some. And, there are plenty of outcome studies showing the effectiveness of surgery.

I'm relatively certain that all participants in these forums want everyone to be out of pain. Some of us just want to be certain that the charlatans making false claims don't go unchallenged. Believe me when I say that I suspect you wouldn't want to live in a world where the only way you could find out that something didn't work, was to try it out. When I'm investigating something, I like hearing what others say about it, both good and bad.

By the way, I spent more than $5,000 (out of my pocket, since chiropractic treatments weren't covered by insurance at that time) on chiropractic treatments, before I even saw my first surgeon. Although he never told me he could improve my curves, this chiropractor told me that he could 1) stop progression and 2) get me out of pain. Neither proved to be true. If someone had told me when I started treatment, that I shouldn't have to invest $5,000 to know whether it would work, I hope I would have at least listened.

Regards,
Linda

[Qikdraw]

Which surgeons don't?

Can you list their names?

While you can't always list names, you have certainly heard stories of doctors who care more about the money they get from surgery than helping the patient with another treatment.

My neighbours were hit by their doctor. She was pregnant and the doctor made a claim of some problem with the baby, the nurses told my neighbours they should get another opinion because the doctor was saying he needed to do a C section, they didn't. So after the C section another doctor looks at the baby and finds no sign of what their doctor claimed. The hospital had two people come to them asking if they are want to file charges against the doctor for a misdiagnosis, they never did. Although they did find out that their doctor prefers C sections so he doesnt have to wait for the baby to come out.

My wife & I, plus all our neighbours, told them they should go after the doctor for it, he obviosly isn't there for the health of the patient or babies, but for the money he makes. We said that if you're not going to sue, at least get the doctor out of the hospital, how many other women is he going to scar up because he doesn't want to wait?

Not all doctors are ethical.

[MissEmmyF]

Hi MissEmmyF....

I can find plenty of examples of honest, helpful discussion in the non-surgical forum, where people say "good luck." Here's one example:

http://www.scoliosis.org/forum/showthread.php?t=6858

Honestly, it really only gets contentious when false claims are made.

And, while in general, there aren't a lot of people debating the surgery issue, there are certainly some. And, there are plenty of outcome studies showing the effectiveness of surgery.

I'm relatively certain that all participants in these forums want everyone to be out of pain. Some of us just want to be certain that the charlatans making false claims don't go unchallenged. Believe me when I say that I suspect you wouldn't want to live in a world where the only way you could find out that something didn't work, was to try it out. When I'm investigating something, I like hearing what others say about it, both good and bad.

By the way, I spent more than $5,000 (out of my pocket, since chiropractic treatments weren't covered by insurance at that time) on chiropractic treatments, before I even saw my first surgeon. Although he never told me he could improve my curves, this chiropractor told me that he could 1) stop progression and 2) get me out of pain. Neither proved to be true. If someone had told me when I started treatment, that I shouldn't have to invest $5,000 to know whether it would work, I hope I would have at least listened.

Regards,
Linda

I totally agree...I've spent a lot of money on alternative therapies too. It's even more frustrating when all you ultimately want is pain control (not a reduction in the curve (although that would be nice!)), and you can't even get that consistently! I've tried it all and would get so frustrated. Surgery wasn't an option for me (and I wouldn't have wanted it anyway), everything else was failing, and there was literally nothing else I could do except for explore more alternative methods or become complacent and most likely have my pain level get worse. It's a tough spot to be in as I'm sure you all know. Hopefully the alternative method I've decided to explore now will give me the pain relief I desire.

But, I guess my point is I don't think you hear enough on this forum about problems relating to scoliosis surgery. Yes, sometimes it's the only option and therefore it may seem like a "good" option, but there's still a lot wrong with it. You have a huge recovery process, risk of many complications, loss of flexibility, the rest of your vertebrae above and below the fusion are now way more susceptible to problems, there's a good chance you'll have problems with your fusion later on in life, etc. I'm not saying "hey, skip the surgery, there's a great alternative that can straighten your spine"...it's just sad that that's the only option in many cases.

[CHRIS WBS]

But, I guess my point is I don't think you hear enough on this forum about problems relating to scoliosis surgery.

I have to disagree, MissEmmyF. I’ve heard plenty here…everything from paralysis to the tragic death of a young mother from Texas. I mulled over surgery for nearly three years. Spines are not meant to be fused. But they’re not meant to be deformed and twisted either. I had to decide which would offer me a better quality of life going forward – surgery to stop a progressive curve or do nothing. I would have loved to avoid surgery for all the reasons you mention, but when the onslaught of symptoms caused by a collapsing spine began to emerge, I realized that surgery was the only option I had to stabilize my spine. But I have no problem with anyone seeking an alternative treatment. If I felt confident enough that there was one out there, I would probably have pursued it myself.

[mamamax]

i fully agree with everything you said except i don't agree that all surgeons take an oath to be ethical.

Hi Emmy - the Hippocratic Oath was abandoned in the 70's by many American medical schools (for an alternate pledge like the Oath or Prayer of Maimonides.. The links below will give you plenty of information the next time you're just sitting around with your friends discussing such things. An eye opener (the true information regarding this oath).

References:

http://www.medword.com/hippocrates.html

http://www.nlm.nih.gov/hmd/greek/greek_oath.html

http://en.wikipedia.org/wiki/Hippocratic_Oath#Modern_relevance

[mamamax]

Statements claiming that scoliosis cannot be stabilized or reversed without bracing or surgery are not, and never have been, supported by scientific data. On the contrary … long-standing basic and clinical research results documented in reputable medical journals are consistent with the hypothesis that scoliosis can be reduced if not eliminated using nonsurgical approaches.

Realistic opportunities to examine the role of exercise in treatment of scoliosis are available for the first time in history. A growing body of evidence from independent sources is consistent with the hypothesis that exercise-based approaches can be used effectively to reverse the signs and symptoms of spinal deformity and to prevent progression in children and adults.

The above statements seem like outlandish claims void of evidence and/or proof, don't they?

Only - they are not.

Those not familiar with the evidence which would support such statements, certainly may find the statements to be wild and outlandish claims void of evidence and/or proof. The statements however, are based upon over 10,000 research publications and other recognized research data compiled by the author who has also written research articles with Joseph O’Brien, and who is well respected in both research and medical communities internationally. Her name is Dr. Martha Hawes.

Many are aware of the things she has observed, written about, and experienced. It's all fairly new to me however – and i'm glad to be playing catch up rather than remaining in the dark ages.

No one is claiming of course, that any cobb angle reduction by any means (surgical or non surgical) is permanent or that such reduction (surgical or non surgical) does not require some sort of care, life style changes, and/or maintenance.

Those of us adults searching non surgical treatment for our conditions would do well to learn what Martha and many other doctors, researchers, and scientists have been gathering and speaking about for over seven years. Our paths are different - some choose a bracing system like none other - some choose Schroth (reported to even help surgical patients with pain) - others like myself combine both. I cannot wait to see what the next decade may bring in all these areas.

We are collectively in this boat together (the ship called Remedy) – individually our conditions and remedies are unique requiring sometimes more than just one technique. Wonderful it is - that we can all share what we learn along the way, as our paths may be quite varied and yet our desired destinations much the same.


References:

Paragraph #1 (excerpt)
Scoliosis and the Human Spine
Introduction by Martha Hawes
http://www.ctds.info/scoliosis_treatment.html

Paragraph #2 (excerpt)
The use of exercises in the treatment of scoliosis:
an Evidence based critical review of the literature
http://www.informaworld.com/smpp/content~db=all?content=10.1080/0963828032000159202
Martha Hawes

Book Available Here:
http://www.scoliosis.org/store/books.php

The transformation of spinal curvature into spinal deformity:
pathological processes and implications for treatment
Martha C Hawes and Joseph P O'Brien
Scoliosis. 2006; 1: 3.
Published online 2006 March 31. doi: 10.1186/1748-7161-1-3.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1459276

For an article on Dr. Hawes scoliosis including before and after x-ray images and pictures of her back, see the National Scoliosis Foundation's Spring, 2002 newsletter.

[LindaRacine]

But, I guess my point is I don't think you hear enough on this forum about problems relating to scoliosis surgery.
Hi MissEmmyF...

I agree that good outcome stories are much more prevalent than bad outcome stories. I think there are two basic reasons for that: 1) Good outcomes outnumber bad outcomes by at least 3-4 to 1. 2) People with bad outcomes are less likely to post. I hear from people with bad outcomes occasionally, who state that they don't want to frighten others. My response is always that bad outcomes are as equally useful as good outcomes, in helping people make the surgery decision.

And, to circle back to the original debate of negative posts about alternative treatments, you may remember that several of us have stated that the issue is false claims. Thankfully, I've never heard of anyone (at least here in the U.S.) making false claims about scoliosis surgery. People undergoing surgery have to sign an informed consent statement that summarizes the potential complications of the procedure(s) that they'll be undergoing. There are a lot of potential complications. Thankfully, the vast majority of complications are not serious, and can easily be corrected or endured. Unfortunately, for the small percentage of people who have serious complications, their outcomes can be 100% bad. These are all things that we need to understand before agreeing to surgery. But, at least it's all information we know prior to treatment. If I ever heard that a surgeon guaranteed a good outcome, I think we'd all jump down their throat. I'd lead the way.

Regards,
Linda

[mamamax]

Hi Emmy – there is much evidence of what you say.

Regarding surgery: when successful, this is - a miracle (an understatement for those who experience such).

Also true: there are serious risks (as in any surgery) to be considered.

When I was considering surgery earlier this year (which would effectively involve fusion top to bottom), I discussed these risks (as well as the fact that surgery would be no guarantee in terms of pain relief) in detail with more than one highly qualified and respected surgeon – and I also searched out accurate evidence-based reports. The report below (full text version) written (and well referenced) by Hans-Rudolf Weiss & Deborah Goodall is one of the best I have ever come across, and one I would highly recommend to anyone considering surgery (as an informational reference toward individual patient/surgeon discussion). An informative and compelling report regarding both risks and statistics:

Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9

Circling back to the original debate regarding negative posts in the non surgical forum – the best (and one of the more recent) examples of this may be found in the Success with Spinecor thread: http://www.scoliosis.org/forum/showthread.php?t=7733

Many of us have come to understand subsequently that the original poster is as real as her experience. She in fact shares the same Spincor provider practice as myself.

The official answer to such things, and how to best handle them (by example) – found in posting #1 (this thread) Setting the Record Straight:
http://www.scoliosis.org/forum/showthread.php?t=8765

Joe’s response does seem to have made some necessary and much welcomed changes to our workshop forum were we find a large group of international membership (each member with individual and unique experiences). Think we learn daily how to best communicate with each other towards valuable discussion that increases a knowledge base which is viewed world wide (maybe a few members are even watching now while attending the SOSORT meeting in France during breaks). In my personal opinion, learning how to best communicate in such an environment is a life-long learning experience, and we learn much from mistakes (I have anyway, and certainly I cannot be all that different from anyone else).

[LindaRacine]

Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9


First, I doubt that you would trust a scoliosis surgeon to publish an unbiased study on the effectiveness of alternative treatments.

Second, at least there ARE long-term outcome studies for scoliosis surgery. The same cannot be stated for Schroth, or any other alternative treatment.

Third, the referenced study includes papers that go back to surgical procedures that have been out of use in the US for several decades. It also includes surgical procedures on patients with neuromuscular scoliosis and congenital scoliosis. (The alternative to surgery for many of of these patients, is death.)

A more fare view of current short-term scoliosis surgical outcomes can be found here:

http://www.ncbi.nlm.nih.gov/sites/entrez

Spine. 2006 Feb 1;31(3):345-9.Click here to read Links
Complications in spinal fusion for adolescent idiopathic scoliosis in the new millennium. A report of the Scoliosis Research Society Morbidity and Mortality Committee.
Coe JD, Arlet V, Donaldson W, Berven S, Hanson DS, Mudiyam R, Perra JH, Shaffrey CI.

Center for Spinal Deformity and Injury, Suite 1F, 360 Dardanelli Lane, Los Gatos, CA 95032, USA. jcoe@jcoemd.com

RESULTS: Complications were reported in 5.7% of the 6334 patients in this series. Of the 1164 patients who underwent anterior fusion and instrumentation, 5.2% had complications, of the 4369 who underwent posterior instrumentation and fusion, 5.1% had complications, and of the 801 who underwent combined instrumentation and fusion, 10.2% had complications. There were 2 patients (0.03%) who died of their complications. There was no statistical difference in overall complication rates between anterior and posterior procedures. However, the difference in complication rates between anterior or posterior procedures compared to combined procedures was highly significant (P < 0.0001). The differences in neurologic complication rates between combined and anterior procedures, as well as combined and posterior procedures were also highly statistically significant (P < 0.0001), but not between anterior and posterior procedures. CONCLUSIONS: This study shows that complication rates are similar for anterior versus posterior approaches to AIS deformity correction. Combined anterior and posterior instrumentation and fusion has double the complication rate of either anterior or posterior instrumentation and fusion alone. Combined anterior and posterior instrumentation and fusion also has a significantly higher rate of neurologic complications than anterior or posterior instrumentation and fusion alone.

The SRS has formed a study group that has and will continue to issue papers to show the long-term outcomes of surgeries being performed starting about 3 years ago. In the meantime, here are some long-term outcome studies on the universal implant systems that are the gold standard today:

http://www.ncbi.nlm.nih.gov/pubmed/17907428?ordinalpos=28&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Long-term clinical and radiographic results of Cotrel-Dubousset instrumentation of right thoracic adolescent idiopathic scoliosis.
Boos N, Dolan LA, Weinstein SL.

Dept. of Orthopaedic Surgery, University of Iowa Hospitals and Clinics, Iowa City, Iowa, USA. nboos@balgrist.unizh.ch

All patients were doing well and had no complaints with regard to a substantial limitation of professional or sports activity. There were no apparent non-unions, infections or neurological complications. CDI of adolescent right thoracic idiopathic scoliosis provides encouraging clinical and radiographic results at an average follow-up of 9 years (2 to 16 years). Overall patient satisfaction, functional status and subjective cosmetic improvement is high.

http://www.ncbi.nlm.nih.gov/pubmed/17762812?ordinalpos=31&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Spine. 2007 Sep 1;32(19):2103-10.Click here to read Links
Idiopathic scoliosis treated with Cotrel-Dubousset instrumentation: evaluation 10 years after surgery.
Bjerkreim I, Steen H, Brox JI.

Rikshospitalet-Radiumhospitalet Medical Center, Orthopaedic Department, University of Oslo, Oslo, Norway.

The average primary curve was reduced from 56 degrees to 19 degrees, and this correction was maintained during follow-up. Fourteen patients had minor complications, and 5 patients had implants removed because of late clinically suspected infections. A total of 86 patients answered the 10-year questionnaire; 97% of the patients considered back function as excellent, good, or fair, and 96% would have done the operation again. Scores for EQ-5D and ODI were slightly worse than in the normal population. Despite this observation, 45% of the patients reported to have consulted a physician or received physiotherapy for back pain during the last year before the 10-year follow-up. CONCLUSION: Radiologic results, patient satisfaction, and mean scores for quality of life and back function were excellent after CD instrumentation for AIS, but a considerable number of patients had treatment for back problems.

http://www.ncbi.nlm.nih.gov/pubmed/16924553?ordinalpos=48&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Eur Spine J. 2007 Mar;16(3):381-91. Epub 2006 Aug 19.Click here to read Click here to read Links
Minimum 10 years follow-up surgical results of adolescent idiopathic scoliosis patients treated with TSRH instrumentation.
Benli IT, Ates B, Akalin S, Citak M, Kaya A, Alanay A.

Department of Orthopedics and Traumatology, Faculty of Medicine, UFUK University, Mithatpasa Cad. 59/2, Kyzylay, Ankara 06420, Turkey. cutku@ada.net.tr

Last two decades witnessed great advances in the surgical treatment of idiopathic scoliosis. However, the number of studies evaluating the long-term results of these treatment methods is relatively low. During recent years, besides radiological and clinical studies, questionnaires like SRS-22 assessing subjective functional and mental status and life-quality of patients have gained importance for the evaluation of these results. In this study, surgical outcome and Turkish SRS-22 questionnaire results of 109 late-onset adolescent idiopathic scoliosis patients surgically treated with third-generation instrumentation [Texas Scottish Rite Hospital (TSRH) System] and followed for a minimum of 10 years were evaluated. The balance was analyzed clinically and radiologically by the measurement of the lateral trunk shift (LT), shift of head (SH), and shift of stable vertebra (SS). Mean age of the patients was 14.4+/-1.9 and mean follow-up period was 136.9+/-12.7 months. When all the patients were included, the preoperative mean Cobb angle of major curves in the frontal plane was 60.8 degrees +/-17.5 degrees . Major curves that were corrected by 38.7+/-22.1% in the bending radiograms, postoperatively achieved a correction of 64.0+/-15.8%. At the last follow-up visit, 10.3 degrees +/-10.8 degrees of correction loss was recorded in major curves in the frontal plane with 50.5+/-23.1% final correction rate. Also, the mean postoperative and final kyphosis angles and lumbar lordosis angles were 37.7 degrees +/-7.4 degrees , 37.0 degrees +/-8.4 degrees , 37.5 degrees +/-8.7 degrees , and 36.3 degrees +/-8.5 degrees , respectively. A statistically significant correction was obtained at the sagittal plane; mean postoperative changes compared to preoperative values were 7.9 degrees and 12.9 degrees for thoracic and lumbar regions, respectively. On the other hand, normal physiological thoracic and lumbar sagittal contours were achieved in 83.5% and 67.9% of the patients, respectively. Postoperatively, a statistically significant correction was obtained in LT, SH, and SS values (P<0.05). Although, none of the patients had completely balanced curves preoperatively, in 95.4% of the patients the curves were found to be completely balanced or clinically well balanced postoperatively. This rate was maintained at the last follow-up visit. Results of about 10 years of follow-up these patients treated with TSRH instrumentation suggest that the method is efficient for the correction of frontal and sagittal plane deformities and trunk balance. In addition, it results in a better life-quality.

[mamamax]

I doubt seriously that anyone would risk their reputations by publishing erroneous material in the Scoliosis Journal (which i believe requires some strict publishing guidelines).

The reason i reference this article (post #128 this thread) from the Scoliosis Journal (presented in 2008) is because (as i said earlier) it serves as an excellent reference for patient/surgeon discussion. The 254 citations given in this article cover all the risk factors that remain today - and provide some answers to what some may experience from older surgeries ... the information remains good material for patient/surgeon discussion - My orthopedic specialist also says it is an excellent article in this regard.

I don't really wish to debate the pros and cons of surgical vs non surgical methods of treatment for scoliosis - i've already reviewed the necessary things relative to my individual condition with experts in the field. The decision towards surgery (or not) is a personal one and the more information the better. Found your references also informative.

Regarding long term studies - they do take time. Was pleased to see history unfolding relative to Spinecor at the SOSORT Conference today (final program which includes seven presentations).


Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9


6th International Conference on Conservative Management of Spinal Deformites
May 21-23, 2009 - Lyon, France
http://www.sosort-lyon.net/
Click on Final Program (on the left)
Search/Find on this page: Spinecor

[LindaRacine]

I doubt seriously that anyone would risk their reputations by publishing erroneous material in the Scoliosis Journal (which i believe requires some strict publishing guidelines).


Who said that anything was erroneous? They just chose to slant their results, by using old studies, most of which have zero relevance to surgeries being performed today, and studies on neuromuscular and congenital scoliosis, which have no relevance to patients with idiopathic scoliosis. We all see what we want to see.

--Linda

[mamamax]

We see what we want to see - that's the darn truth!

The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.

[LindaRacine]

We see what we want to see - that's the darn truth!

The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.


While we're on the topic, would you post who your orthopaedic specialist is?

[mamamax]

What would be the point?

[LindaRacine]

A discussion with him on the topic.

[LindaRacine]

[I]
The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.

You don't need flawed studies for a discussion of surgical risks. Any of the newer studies I mentioned above outline the potential complications, and give a much more realistic picture of one's actual risk percentages.

--Linda

[mamamax]

A discussion with him on the topic.

Reference: Posts 133/134/135


Hahaha .. as i thought. Not everyone here posts contact information for their specialists. Have you? I think i'll remain in the camp where me and my specialist are anonymous. A personal choice made my many here. Last time i posted such information - said dear doctor received a lot of interesting phone calls - will spare this one.

I'm sure your specialist would be glad to discuss it* though :cool:

*The information does remain good material for patient/surgeon discussion (for symptoms arising from older surgeries and for current known risk factors regardless of current methods) - My orthopedic specialist also says it is an excellent article in this regard - figure he knows what he's talking about.

Rate of Complications in Scoliosis Surgery
A Systematic Review of the Pub Med Literature
Hans-Rudolp Weiss & Deborah Goodall
Published August 5th 2008
Scoliosis 2008, 3:9 doi: 10.1186/1748-7161-3-9
http://www.scoliosisjournal.com/content/3/1/9

[LindaRacine]

Just because you state it multiple times, doesn't make it true.

I suspect you're not posting the name of your specialist, because he is not a scoliosis specialist. My specialist is John Gray.

--Linda

[mamamax]

As i said (and regardless of what you suspect - which is not always correct) ...

Not everyone here posts contact information for their specialists. I think i'll remain in the camp where me and my specialist (who is a scoliosis specialist) are anonymous. A personal choice made my many here.

Last time i posted such information - said dear doctor received a lot of interesting phone calls - will spare this one.

BTY .. You're welcome doc

[LindaRacine]

As i said (and regardless of what you suspect - which is not always correct) ...

Not everyone here posts contact information for their specialists. I think i'll remain in the camp where me and my specialist (who is a scoliosis specialist) are anonymous. A personal choice made my many here.

Last time i posted such information - said dear doctor received a lot of interesting phone calls - will spare this one.

BTY .. You're welcome doc

Yes, not always, but definitely sometimes.

If you're basing your treatment decisions on the word of a doctor who is not a scoliosis specialist, wouldn't it be interesting to see what a specialist who treats lots of scoliosis patients, has to say?

[mamamax]

Yes - definitely.

Like i said above - my specialist is a scoliosis specialist .. well respected one at that.

[LindaRacine]

Yes - definitely.

Like i said above - my specialist is a scoliosis specialist .. well respected one at that.


Guess we'll never know for sure.

[mamamax]

I know - that's about all that really matters :cool:

[mariaf]

Mamamax,

If you want folks to stop doubting/questioning you (and I assume you do), may I suggest that you be more open and less mysterious.

My son's specialist is Dr. Randal Betz.

Linda shared her doctor's name, as have countless others here in various posts. Why wouldn't we?

I truly doubt anyone here would look your doctor up, and call him to have a discussion on this (even if they did, I'm sure he has folks to screen his calls, no?).

[mamamax]

Mamamax,

If you want folks to stop doubting/questioning you (and I assume you do), may I suggest that you be more open and less mysterious.

My son's specialist is Dr. Randal Betz.

Linda shared her doctor's name, as have countless others here in various posts. Why wouldn't we?

I truly doubt anyone here would look your doctor up, and call him to have a discussion on this (even if they did, I'm sure he has folks to screen his calls, no?).

Here’s the thing (well a few things) …

#1 I’ve made some great pals here (and been learning quite a lot about non surgical treatments for scoliosis) – some I correspond with off forum .. it is for them, myself, and others that I stay.

#2 Not everyone doubts me. Those who doubt me now – always will, regardless of what I say or do - regarding those, no I have no great concern in convincing them to change their minds (they are as entitled to their own opinions as i am mine).

#3 I’ve previously posted information about my doctor/brace provider (openly without being asked for the information). The result of that was like I said above (posts 133 – 137 & 139), some interesting phone calls to my providers office (by the doubters). Some of those calls were disruptive to those who manage the office – and a poor representation of most members here.

#4 Many choose not to publicly post their personal information (including the public listing of their orthopedic specialists’ names) – I have come to learn the value of that – and now belong to that camp.

#5 Linda indicated she wanted me to post my specialist’s name so that she could have a conversation with him regarding a reference he and I discussed in the course of my treatment. I suggested that if she feels the need to discuss the value of said reference with an orthopedic scoliosis specialist – that she consult her own. He may agree – he may not (not all specialists agree).

#6 My orthopedic specialist does not need to receive phone calls from Linda regarding the value of a reference he and I discussed in the course of my treatment (nor do i desire/require her as someone included in my personal treatment program by way of her communication with my doctor).

#7 My specialist's name does not need to be published here providing opportunity for repeat performance of item #3 above.

#8 I have no need of the name of Linda’s specialist and her posting it, does not change the way I view our relationship.

So – that’s about all there is to that.

If anyone wants or feels they need more details than this – just PM me and I’ll be glad to reply.

[mariaf]

OR it could be, as Linda mentioned, that he is not a scoliosis specialist.

Guess we'll never know.

[concerned dad]

Now, let me get this straight…..

Linda Asks
While we're on the topic, would you post who your orthopaedic specialist is?

Mamamax replies
What would be the point?

Linda replies
A discussion with him on the topic.

And, as discussed on a recent thread, Linda just called MissEmmyF’s doctor on the phone. EDIT: Linda did not call the doctor, she is personally acquainted with the doctor and emailed him, it was the doctor who called her back as clarified below.)
I dunno, maybe it’s just me, but that seems WAY WAY WAY out of line. I’m with Mamamax on this a zillion percent.

I too choose to keep private the name of my daughter’s doctor (discussed in last paragraph here (http://www.scoliosis.org/forum/showpost.php?p=70553&postcount=96)). It wouldn’t be too hard to guess who he is, and if anybody does, I sure would NOT want anyone calling him up to discuss issues batted around on this forum.

Does anyone doubt there is a spectrum of opinions among SRS members concerning the issues we discuss here? The one thing I have learned is that there is little consensus. All you have to do is read Lori Dolans Equipoise paper to convince yourself of that FACT. My personal experience talking to 4 doctors has convinced me that there is disagreement on many aspects of scoliosis.

Linda, you want Mamamax’s doctors name so you can have "a discussion with him on the topic?" I have the highest respect for you and all you do here. You are the voice of sanity on many controversial topics. But, in my opinion, that is just plain wrong.

[LindaRacine]

Now, let me get this straight…..


I dunno, maybe it’s just me, but that seems WAY WAY WAY out of line. I’m with Mamamax on this a zillion percent.

I too choose to keep private the name of my daughter’s doctor (discussed in last paragraph here (http://www.scoliosis.org/forum/showpost.php?p=70553&postcount=96)). It wouldn’t be too hard to guess who he is, and if anybody does, I sure would NOT want anyone calling him up to discuss issues batted around on this forum.

Does anyone doubt there is a spectrum of opinions among SRS members concerning the issues we discuss here? The one thing I have learned is that there is little consensus. All you have to do is read Lori Dolans Equipoise paper to convince yourself of that FACT. My personal experience talking to 4 doctors has convinced me that there is disagreement on many aspects of scoliosis.

Linda, you want Mamamax’s doctors name so you can have "a discussion with him on the topic?" I have the highest respect for you and all you do here. You are the voice of sanity on many controversial topics. But, in my opinion, that is just plain wrong.

Hi CD...

First, I didn't call him. He called me, after I sent an email asking for his thoughts on which patients might benefit from Schroth. I have a lot of respect for Dr. Mendelow, so was honestly interested in getting the info. I didn't mention anyone's name to him.

If someone is stating that a specialist believes something, I honestly want to know the details. It's how I disseminate info elsewhere. Sorry if you feel I crossed the line. And, by the way, I would not have contacted Dr. Mendelow if I didn't already known him.

Regards,
Linda

[CHRIS WBS]

Now, let me get this straight…..

Linda Asks


Mamamax replies


Linda replies


And, as discussed on a recent thread, Linda just called MissEmmyF’s doctor on the phone.

I dunno, maybe it’s just me, but that seems WAY WAY WAY out of line. I’m with Mamamax on this a zillion percent.

I too choose to keep private the name of my daughter’s doctor (discussed in last paragraph here (http://www.scoliosis.org/forum/showpost.php?p=70553&postcount=96)). It wouldn’t be too hard to guess who he is, and if anybody does, I sure would NOT want anyone calling him up to discuss issues batted around on this forum.

Does anyone doubt there is a spectrum of opinions among SRS members concerning the issues we discuss here? The one thing I have learned is that there is little consensus. All you have to do is read Lori Dolans Equipoise paper to convince yourself of that FACT. My personal experience talking to 4 doctors has convinced me that there is disagreement on many aspects of scoliosis.

Linda, you want Mamamax’s doctors name so you can have "a discussion with him on the topic?" I have the highest respect for you and all you do here. You are the voice of sanity on many controversial topics. But, in my opinion, that is just plain wrong.

I am in total agreement with you on this, CD. BTW, when I returned to the forum after my surgery to report on my outcome, there was a PM in my mail box from a member suggesting that my doctor had been contacted regarding a statement I had made. What an invasion of privacy! Mamamax, you are very wise.

[mariaf]

Hi CD,

Before I read Linda's most recent post above, I was going to say that I thought we were talking about two different things:

1. Someone sharing a doctor's name; and

2. Another member contacting said doctor to discuss things on this forum, etc.

I could not agree with you more that #2 is waaaaay out of line...period.

But I was also going to say (which Linda confirmed) that I doubted anyone would actually DO that. For example, just because I share the fact that Dr. Betz is my son's doctor does not mean that I expect, or would condone, someone calling him to discuss what I post here - and again, I could not imagine anyone here doing that, unless perhaps they already knew him and wanted to discuss something in general without mentioning names, sources of info, etc.

Hi Sharon,

I just wanted to sat that I DO understand what you are saying - and I know that a lot of us here, when we question a post (NOT necessarily mamamax's - but posts in general, sometimes by a brand new member), are not trying to tell people how to think or what to do, but rather we are raising questions to get more information so that nobody here is ever mislead or given false hope (perhaps by someone looking to profit from a parent's desperation to find a non-surgical fix for their child's scoliosis, etc.). AGAIN, I am talking in generalities, NOT about any particular member.

I, for one, appreciate candor. And as much as emotional support and encouragment are important, as a parent I would be even MORE concerned with getting the FACTS when I'm deciding how to handle my child's medical condition. How could anything be more important than that?

[CHRIS WBS]

But I was also going to say (which Linda confirmed) that I doubted anyone would actually DO that.

Naive assumption on your part, Maria.

[mariaf]

If you say so.

However, in all the time I've been here this is the first time I have ever read anything on the topic of someone's doctor receiving an unsolicited phone call. And none of us have any PROOF that it has occurred, even once.

I'm not saying it isn't possible - anything is possible - and anyone can look up any doctor's number and call them I suppose (whehter or not their name is mentioned here or not) - but I doubt folks are dialing as I type this.:rolleyes:

[mamamax]

If you say so.

However, in all the time I've been here this is the first time I have ever read anything on the topic of someone's doctor receiving an unsolicited phone call. And none of us have any PROOF that it has occurred, even once.

I'm not saying it isn't possible - anything is possible - and anyone can look up any doctor's number and call them I suppose (whehter or not their name is mentioned here or not) - but I doubt folks are dialing as I type this.:rolleyes:

Again, Naive assumption on your part, Maria.

[mamamax]

I am in total agreement with you on this, CD. BTW, when I returned to the forum after my surgery to report on my outcome, there was a PM in my mail box from a member suggesting that my doctor had been contacted regarding a statement I had made. What an invasion of privacy! Mamamax, you are very wise.

Thank you Chris .. invasion of privacy indeed!

[mamamax]

Now, let me get this straight…..

Linda Asks


Mamamax replies


Linda replies


And, as discussed on a recent thread, Linda just called MissEmmyF’s doctor on the phone. EDIT: Linda did not call the doctor, she is personally acquainted with the doctor and emailed him, it was the doctor who called her back as clarified below.)
I dunno, maybe it’s just me, but that seems WAY WAY WAY out of line. I’m with Mamamax on this a zillion percent.

I too choose to keep private the name of my daughter’s doctor (discussed in last paragraph here (http://www.scoliosis.org/forum/showpost.php?p=70553&postcount=96)). It wouldn’t be too hard to guess who he is, and if anybody does, I sure would NOT want anyone calling him up to discuss issues batted around on this forum.

Does anyone doubt there is a spectrum of opinions among SRS members concerning the issues we discuss here? The one thing I have learned is that there is little consensus. All you have to do is read Lori Dolans Equipoise paper to convince yourself of that FACT. My personal experience talking to 4 doctors has convinced me that there is disagreement on many aspects of scoliosis.

Linda, you want Mamamax’s doctors name so you can have "a discussion with him on the topic?" I have the highest respect for you and all you do here. You are the voice of sanity on many controversial topics. But, in my opinion, that is just plain wrong.

Yes - exactly. Thank you CD

[mamamax]

Just to clarify the situation in the other thread - this happened to a brand new member SLS (not MissEmmyF) the day after her joining. She has not returned since.

Reference:
127/128/129/130/136 Clear Institute vs Schroth Method
http://www.scoliosis.org/forum/showthread.php?t=8632&page=9

[LindaRacine]

Hi...

I think it's really important to remember that these are public forums. It's entirely possible that a doctor could see comments that were attributed to them. I don't think anyone's privacy is being invaded, once they've posted something on an internet forum. Whenever I post something that involves another individual, I try to think about what that person would think if they read the post. Would they think that I was accurately conveying what they told me?

If there are specialists who are telling their patients that certain treatments work, but there is no published literature to back it up, don't we want to get a dialog going to get the details? If someone said that their specialist was recommending Raindrop Therapy, should that go unchallenged? You know what happens if it goes unchallenged? It gets picked up as fact and reported as such. (We've seen that here a lot lately.)

If I wanted to convince people that what I was stating was fact, I wouldn't be afraid to attribute the facts to prove my point. And, I don't see anything wrong with someone discussing the issue with a person to whom statements were attributed, to get their perspective. Don't we all want the same thing... good, reliable information?

You may not believe me, but I would really love to find out that an alternative treatment was successful. Having gone through scoliosis surgery, I would never want anyone to have to go through it if there was a viable alternative. So, I'm often the first person to talk about people like Elise Browning Miller and Martha Hawes, or that alternative treatments can often reduce a person's pain. I am a lot less anti-alternative than people think. I just happen to think it's very important that claims be backed up by science. And, telling people that some unknown individual is stating that something is "working," doesn't further the cause.

--Linda

[Qikdraw]

Just to clarify the situation in the other thread - this happened to a brand new member SLS (not MissEmmyF) the day after her joining. She has not returned since.

Reference:
127/128/129/130/136 Clear Institute vs Schroth Method
http://www.scoliosis.org/forum/showthread.php?t=8632&page=9


She was last active yesterday (05/21), and you're trying to make it sound like she's been run out of town. Please stop the hyperbole, it does no one any good. People come here for information, not to witness petty bickering or 'gotcha' sessions.

This forum is for sharing information and support, lets keep it that way.

[Pooka1]

Hi...

I think it's really important to remember that these are public forums. It's entirely possible that a doctor could see comments that were attributed to them. I don't think anyone's privacy is being invaded, once they've posted something on an internet forum. Whenever I post something that involves another individual, I try to think about what that person would think if they read the post. Would they think that I was accurately conveying what they told me?

If there are specialists who are telling their patients that certain treatments work, but there is no published literature to back it up, don't we want to get a dialog going to get the details? If someone said that their specialist was recommending Raindrop Therapy, should that go unchallenged? You know what happens if it goes unchallenged? It gets picked up as fact and reported as such. (We've seen that here a lot lately.)

If I wanted to convince people that what I was stating was fact, I wouldn't be afraid to attribute the facts to prove my point. And, I don't see anything wrong with someone discussing the issue with a person to whom statements were attributed, to get their perspective. Don't we all want the same thing... good, reliable information?

Absolutely agree.

It is hard for lay people to fully understand some comments made by professionals. It is very important to be as clear as possible.

For example, I have been very careful to not say our surgeon says my fused daughter is "cured." I say she is cured because the surgeon said she is back in the general population on all future back issues. I don't see a distinction between that and being "cured." My daughter does not have to do anything special to protect her back or discs or whatever over and above what an unfused person would do.

But it may not be in our surgeon's mind. Yet some here might think I said he said my daughter was cured. We have to always read very carefully.

Last, I would bet my house some things attributed to surgeons on this forum were misunderstandings. So Linda is correct in her comments about challenging questionable statements attributed to surgeons. Surgeons don't want people misrepresenting their comments and if experienced people like Linda can help vet those reported comments, I'm sure they would be grateful. I cringe at the thought of some of those guys reading what they supposedly said. :eek:

[mamamax]

Here’s the thing (well a few things) …

#1 I’ve made some great pals here (and been learning quite a lot about non surgical treatments for scoliosis) – some I correspond with off forum .. it is for them, myself, and others that I stay.

#2 Not everyone doubts me. Those who doubt me now – always will, regardless of what I say or do - regarding those, no I have no great concern in convincing them to change their minds (they are as entitled to their own opinions as i am mine).

#3 I’ve previously posted information about my doctor/brace provider (openly without being asked for the information). The result of that was like I said above (posts 133 – 137 & 139), some interesting phone calls to my providers office (by the doubters). Some of those calls were disruptive to those who manage the office – and a poor representation of most members here.

#4 Many choose not to publicly post their personal information (including the public listing of their orthopedic specialists’ names) – I have come to learn the value of that – and now belong to that camp.

#5 Linda indicated she wanted me to post my specialist’s name so that she could have a conversation with him regarding a reference he and I discussed in the course of my treatment. I suggested that if she feels the need to discuss the value of said reference with an orthopedic scoliosis specialist – that she consult her own. He may agree – he may not (not all specialists agree).

#6 My orthopedic specialist does not need to receive phone calls from Linda regarding the value of a reference he and I discussed in the course of my treatment (nor do i desire/require her as someone included in my personal treatment program by way of her communication with my doctor).

#7 My specialist's name does not need to be published here providing opportunity for repeat performance of item #3 above.

#8 I have no need of the name of Linda’s specialist and her posting it, does not change the way I view our relationship.

So – that’s about all there is to that.

If anyone wants or feels they need more details than this – just PM me and I’ll be glad to reply.



The issue at hand is items number #3 and #5.

Linda made it clear that she would contact my doctor, without my permission, about a conversation he and i had in the course of my treatment. I think there is a law against that - anybody know what it is?

In addition another member in another thread has been told by a moderator, that her doctor has been contacted in response to comments shared in their doctor/patient relationship (without permission). Said member has not returned since then. That is a fact.

These are serious things.

[Pooka1]

Look, if someone can prevent a surgeon from being misrepresented then that is well within the role of a moderator. We don't want misquotes from surgeons on here if we want folks to get good information.

I think some surgeons would cringe at some things they supposedly "said" as reported here. They would be glad of Linda's efforts. These guys are not idiots as some think they are.

[mamamax]

The issue at hand is items number #3 and #5.

Linda made it clear that she would contact my doctor, without my permission, about a conversation he and i had in the course of my treatment. I think there is a law against that - anybody know what it is?

In addition another member in another thread has been told by a moderator, that her doctor has been contacted in response to comments shared in their doctor/patient relationship (without permission). Said member has not returned since then. That is a fact.

These are serious things.



And yet another member (Post #149) indicates this may have happened also in the past.

These are serious things.

Doctor/Patient conversations in the course of treatment are confidential. If said patient wishes to share such with others that is fine. However - contacting a person's physician to discuss their confidential treatment (and their conversations in the course of treatment are considered part of treatment) .. without permission - is not ok. In fact, there are laws against it.

[Pooka1]

Doctor/Patient conversations in the course of treatment are confidential. If said patient wishes to share such with others that is fine. However - contacting a person's physician to discuss their confidential treatment (and their conversations in the course of treatment are considered part of treatment) .. without permission - is not ok. In fact, there are laws against it.


Nobody contacted anyone to find out about confidential aspects of anyone's treatment. That characterization is reckless.

If you think surgeons wouldn't be grateful to have folks point out statements that they never made but were attributed to them then you can't be helped.

You must think they are idiots.

[concerned dad]

Look, if someone can prevent a surgeon from being misrepresented then that is well within the role of a moderator. We don't want misquotes from surgeons on here if we want folks to get good information.

I think some surgeons would cringe at some things they supposedly "said" as reported here. They would be glad of Linda's efforts. These guys are not idiots as some think they are.

Mamamax said her surgeon thinks the Weiss article provides good material for patient/surgeon discussion.

The 254 citations given in this article cover all the risk factors that remain today - and provide some answers to what some may experience from older surgeries ... the information remains good material for patient/surgeon discussion - My orthopedic specialist also says it is an excellent article in this regard.

That falls FAR short of a statement that warrants ANYONE from contacting the surgeon to be sure he is not being misrepresented.

Period.

Mamamax was further goaded into providing her doctors name with the implication that he wasnt a specialist if his name wasnt revealed. She would be OUT OF HER MIND to reveal the name of her doctor.

[mamamax]

Pooka - I do not think surgeons are idiots - that is truly the grandest reckless assumption on your part.

The Issue is Doctor/Patient Confidentiality


Doctor/Patient conversations in the course of treatment are confidential. If said patient wishes to share such with others that is fine. However - contacting a person's physician to discuss their confidential treatment (and their conversations in the course of treatment are considered part of treatment) .. without permission - is not ok. In fact, there are laws against it.

My orthopedic specialist does not need to receive phone calls from Linda regarding the value of a reference he and I discussed in the course of my treatment (nor do i desire/require her as someone included in my personal treatment program by way of her communication with my doctor.

Obviously you have not had this happen to you - or you, like those of us who have - would feel the same way.

You're ignoring this - does not make it go away.

[Pooka1]

The Weiss article has been discussed. I have a hard time believing the surgeon said those things in those words meaning what was claimed.

But I don't know that.

[concerned dad]

Yes, but just because the paper has serious faults, does not mean that it is not a good place to start a dialogue.

[Pooka1]

Mamamax, if someone misquoted you on a public forum, wouldn't you be grateful to have that corrected?

Now there is the issue of how far a person should go to correct misinformation.

If you know the surgeon personally, it is not out of line to ask if they said that if the surgeon was named and quoted. That's what friends do for friends. If the person wasn't named then there is the risk that they will remain misquoted. If you don't personally know the surgeon, I think it's over the line to call to verify the quote.

I don't care enough to call anyone's surgeon but I might bring the comment up with our surgeon and ask if could possibly have been uttered by a surgeon. For example, I did that when someone's kid came out of surgery with no physical restrictions. From that exchange, I learned that in fact 95% of kids need no physical restrictions to avoid pseudoarthrosis but most surgeons restrict activities because they don't know who the 5% are who do need the restrictions to avoid pseudoarthroses. The surgeons who don't restrict are playing the odds.

[mamamax]

Yes, but just because the paper has serious faults, does not mean that it is not a good place to start a dialogue.

Exactly CD - that was the point, which i made quite clear.

Thank you.

[mamamax]

Pooka - I'm not going to address the off-topic topics at this point because - they are verging away from the topic.

And the topic (which you continue to ignore) is:

Doctor/Patient Confidentiality

[Pooka1]

Yes, but just because the paper has serious faults, does not mean that it is not a good place to start a dialogue.

It might be a place to start certain dialogues like the quality of certain journals. But I disagree that it is a good starting pint for folks investigating surgery now.

[Pooka1]

Pooka - I'm not going to address the off-topic topics at this point because - they are verging away from the topic.


Surgeons potentially being misquoted IS the topic as far as I can tell.

[mamamax]

Again, the topic is

Doctor/Patient Confidentiality

Why do you not wish to comment on this?

[Pooka1]

I think I did comment on that.

Cold calling a surgeon you don't know for the purpose of vetting a quote is over the line.

Asking a friend if they said something attributed to them on a public forum without mentioning who claimed they said it is fine IMHO.

[Pooka1]

Look, you can ask a surgeon if they said something without getting into doctor/patient confidentially. Do you really disagree with that?

[mamamax]

Pooka -

Cold calling is not the issue.

I was directly asked to provide the name of my specialist so that a representative of the National Scoliosis Foundation could have a conversation with him regarding information shared between me and my specialist in the course of my personal treatment.

My orthopedic specialist does not need to receive phone calls from Linda regarding the value of a reference he and I discussed in the course of my treatment without my permission. She can have that conversation with any orthopedic specialist.

I do not desire/require to include Linda as someone who is part of my personal treatment program by way of her communication with my doctor - regarding a personal conversation that he and i had ... and said conversation is indeed a part of my confidential treatment.

As CD said previously - he sure would not want his specialist called regarding topics batted around in this forum - neither would I, and many others.

CD actually answers your comments better than I Pooka - Please see his Post 164 ... i think you have not read it yet.

[LindaRacine]

Pooka - I do not think surgeons are idiots - that is truly the grandest reckless assumption on your part.

The Issue is Doctor/Patient Confidentiality


Doctor/Patient conversations in the course of treatment are confidential. If said patient wishes to share such with others that is fine. However - contacting a person's physician to discuss their confidential treatment (and their conversations in the course of treatment are considered part of treatment) .. without permission - is not ok. In fact, there are laws against it.

My orthopedic specialist does not need to receive phone calls from Linda regarding the value of a reference he and I discussed in the course of my treatment (nor do i desire/require her as someone included in my personal treatment program by way of her communication with my doctor.

Obviously you have not had this happen to you - or you, like those of us who have - would feel the same way.

You're ignoring this - does not make it go away.


Maxene...

You are quoting your doctor in a public forum, so using your faulty logic, I think you're the one violating the policy. ;-)

--Linda

[mamamax]

Linda ~

What Logic are you talking about Linda?

There are no laws preventing me from sharing an agreement on a topic.

My logic is this - you do not have my permission to call my doctor about any part of my treatment - including our said conversation in the course of my treatment.

I hope that is clear.

[LindaRacine]

Let's say that the comment in question was something potentially harmful. Mamamax states "my specialist told me it's safe to smoke as soon as I'm home from the hospital after my spinal fusion surgery." And, let's say that Mamamax won't back down from that claim. Now, people are starting to smoke because Mamamax said that she had it from a well respected scoliosis specialist.

Let's say that Mamamax had mentioned who her specialist is, and it just so happened that it's the guy that CD takes his kid to.

CD, when you next saw that specialist, would you ask him to comment on the subject?

--Linda

[LindaRacine]

Linda ~

What Logic are you talking about Linda?

There are no laws preventing me from sharing an agreement on a topic.

My logic is this - you do not have my permission to call my doctor about any part of my treatment - including our said conversation in the course of my treatment.

I hope that is clear.

Mamamax...

How can something be confidential when you're the one posting it in a public forum? And, since you won't post the name of the person who gave you the information, there's absolutely no chance that I'll ever be able to verify it.

--Linda

[mamamax]

Let's say that the comment in question was something potentially harmful. Mamamax states "my specialist told me it's safe to smoke as soon as I'm home from the hospital after my spinal fusion surgery." And, let's say that Mamamax won't back down from that claim. Now, people are starting to smoke because Mamamax said that she had it from a well respected scoliosis specialist.

Let's say that Mamamax had mentioned who her specialist is, and it just so happened that it's the guy that CD takes his kid to.

CD, when you next saw that specialist, would you ask him to comment on the subject?

--Linda

That is not the situation we are discussing.

but for sake of discussion - and let's take mamamax out of it while we are at it ...

I agree if member x states that dr x states that ice cream cures scoliosis - that would warrant a phone call in the interest of two things:

1 - finding out if ice cream cures scoliosis

2 - Sharing the fact that it does not

This however, is not the kind of situation we are discussing.

The issue is this: you do not have my permission to call my doctor about any part of my treatment - including our said conversation in the course of my treatment - which many members here recognize as a phone call that is not warranted in this situation.

I hope this is clear.

[mamamax]

Mamamax...

How can something be confidential when you're the one posting it in a public forum? And, since you won't post the name of the person who gave you the information, there's absolutely no chance that I'll ever be able to verify it.

--Linda

CD actually answers this comment better than I ever could Linda - Please see his Post 164 ... i think you have not read it yet.

I think actually - this forum needs/requires a second moderator for the non surgical forum.

CD would make a great one.

Write your Congressman folks! ;)

[Qikdraw]

Can we lock this thread please? Its denegrated to petty bickering even more. This does not help those seeking help on issues regarding surgery or alternative methods.

Can't we all just get along? :D

[mamamax]

Think anyone actually posting to this thread should begin with reading post #1

Can't we all just get along?

Good question handed down throughout the ages.

The need for an un-biased moderator in the non surgical forum who operates within the spirit of NSF forum - as outlined several places ...

remains.

[Pooka1]

Can we lock this thread please? Its denegrated to petty bickering even more. This does not help those seeking help on issues regarding surgery or alternative methods.

Can't we all just get along? :D

I agree this thread is long past the point of productivity though I disagree with locking it. Too heavy-handed.

[mamamax]

I agree this thread is long past the point of productivity though I disagree with locking it. Too heavy-handed.



I also disagree with locking it.

[Qikdraw]

I agree this thread is long past the point of productivity though I disagree with locking it. Too heavy-handed.

When a thread is long past the point of usefullness it does need to be locked. Thats not heavy handed, thats good moderating.

[mamamax]

When a thread is long past the point of usefullness it does need to be locked. Thats not heavy handed, thats good moderating.


Think this thread is hardly outworn its usefulness - much TRUTH being exchanged here

Beginning with Posting #1 - the best example of good moderation.

Lots of Setting the Record Straight going on here.

Off to the beach for the long weekend - Happy Memorial Day everyone - a time to remember our fallen soldiers. Always get that one mixed up with Veteran's Day. In any case, a somber time to remember those who sacrifice for our freedoms. Will check back Tuesday.

[Qikdraw]

Think this thread is hardly outworn its usefulness - much TRUTH being exchanged here

Beginning with Posting #1 - the best example of good moderation.

Lots of Setting the Record Straight going on here.

Off to the beach for the long weekend - Happy Memorial Day everyone - a time to remember our fallen soldiers. Always get that one mixed up with Veteran's Day. In any case, a somber time to remember those who sacrifice for our freedoms. Will check back Tuesday.

There is a lot of argueing going on, not truth. Truth is subjective, argueing is not.

Memorial Day... I found out something interesting about it. You guys use poppies and the 'In Flanders Feilds' poem for Memorial Day, but in Canada the poppies and the poem come out for Rememberance Day (Veterans Day to you, Nov 11th) I also agree with a lot of veterans groups that want Memorial day back on May 30th instead of making it a long weekend where people forget what the day is supposed to be about.

Anyway, Have a good weekend mamamax!

Brad

[debbei]

CD actually answers this comment better than I ever could Linda - Please see his Post 164 ... i think you have not read it yet.

I think actually - this forum needs/requires a second moderator for the non surgical forum.

CD would make a great one.

Write your Congressman folks! ;)

Mamamax,

it sounds to me like you are bucking for the job. This whole thing is just distasteful.

[Writer]

Baloney.

What is distasteful is non mamamax's suggestion but the incessant "ideological brownshirt tactics" of several posters on this board regarding non-surgical treatments, to use the phrase of Ballet Mom in post #10 of this thread. They pay no attention to the instructions outlined in post #1 of this thread.

I agree that another moderator who is open to conservative treatments would be desirable. While Linda is technically very knowledgeable, she has not been controlling the brownshirts, but rather apparently sympathizing with them. The atmosphere has lightened slightly lately, but has been oppressive for over a year. Too many people such as Ballet Mom -- and I know others -- have felt compelled to make contacts offline for fear of being attacked if they express their opinions in an open post.

[Pooka1]

It is one thing to be open to conservative treatments.

It is quite another to claim they work with no robust evidence.

Nobody has a problem with the former.

I would hope everyone has a problem with the latter.

Conservative treatments don't automatically become efficacious just because folks don't want surgery. I think this point is lost on many.

[mamamax]

I think few would argue for the fact that treatments for scoliosis, which have no evidence should be seriously considered. Evidence being defined through long term studies. On the other hand, any successful treatment that someone has experienced first hand is something anyone with scoliosis (who does not elect surgery) would want to be aware of. Hence, the non-surgical board provided through NSF.

So, at the same time, i think we should not turn a blind eye to evidence that exists relative to non-surgical treatment (whenever possible, and here i do acknowledge that non-surgical treatment is not always possible - for some, surgery is the best and only answer). Obviously non surgical techniques are taken seriously on a global basis - hence, SOSORT.

Evidence does exist for other treatments which provide more relief than Yoga or Palaties (for those not electing surgery and barring extenuating circumstances (i.e., Martha Hawes, Schroth, and Spinecor - and in some cases Clear). There may be more - but this is all i am familiar with at this time.

The greater point (lost by some) may be that surgery is not always the only answer. And such evidence has existed for many years.

Martha Hawes covers these things far better than i have talent to express (Scoliosis and the Human Spine) - at the SOSORT 2009 meeting, Rivard and Collard come out and state emphatically (based on evidence & according to scientific guidelines) that their bracing system does change/effect the natural history of adolescent idiopathic scoliosis. For adults, Spinecor is proving promising .. this treatment only arriving on the scene for adults in 2005 .. much funding, willing research participants, and time - remain before we may deem it successful through long term study. An excellent presentation on Schroth at the SOSORT 2009 meeting as well. SEAS has been well documented.

These are things we need to be aware of - take seriously, research to the best of our abilities, and be able easily to share.

[Ballet Mom]

Well, I didn’t want to enter this conversation again, but since I’ve been brought up I simply wanted to say that I have not been compelled to make contacts offline, I have politely answered a few questions put to me by posters requesting a little specific information but that is all. I have not tried to make any contacts with anybody offline. As with any internet forum, I do not want to make my identity known. It’s a dangerous world out there, and people from all over the world are reading these forums. Kids, please note this and do not ever give out any personal information about yourself or where you live over the internet.

Making contacts is not why I read this forum. I’m trying to find out information to help my daughter with her scoliosis and especially how any treatment will affect or even help her with her ballet training. Obviously, I’m trying to avoid surgery for her as a fused spine is rather a significant problem for a professional ballet career and she is passionate about ballet at least at this point in her life, and she’s been doing ballet since she was four years old.

I appreciate the information that Linda was able to provide from Dr. Mendelow about Schroth, although I have to say the information seems to have been buried in all the other conversation. His comments are of great interest to me. Unfortunately, I also don’t think anyone on this forum should be being requested to provide who their physicians are or any other personal information. As I said, using the internet can be dangerous and any information provided online can be accessed at any time by anyone in the world and you have no control over it or what is done with that information after the fact.

If anyone is able to find the remarks from Dr. Mendelow, maybe it could be added to a Schroth thread or made into a new one so the information can be accessed by other people interested in Schroth. I know how hard it is to get any information from these surgeons on anything not surgically related.

Oh, and thank you all veterans for your service and sacrifice to our country. It is greatly appreciated.

[LindaRacine]

Well, I didn’t want to enter this conversation again, but since I’ve been brought up I simply wanted to say that I have not been compelled to make contacts offline, I have politely answered a few questions put to me by posters requesting a little specific information but that is all. I have not tried to make any contacts with anybody offline. As with any internet forum, I do not want to make my identity known. It’s a dangerous world out there, and people from all over the world are reading these forums. Kids, please note this and do not ever give out any personal information about yourself or where you live over the internet.

Making contacts is not why I read this forum. I’m trying to find out information to help my daughter with her scoliosis and especially how any treatment will affect or even help her with her ballet training. Obviously, I’m trying to avoid surgery for her as a fused spine is rather a significant problem for a professional ballet career and she is passionate about ballet at least at this point in her life, and she’s been doing ballet since she was four years old.

I appreciate the information that Linda was able to provide from Dr. Mendelow about Schroth, although I have to say the information seems to have been buried in all the other conversation. His comments are of great interest to me. Unfortunately, I also don’t think anyone on this forum should be being requested to provide who their physicians are or any other personal information. As I said, using the internet can be dangerous and any information provided online can be accessed at any time by anyone in the world and you have no control over it or what is done with that information after the fact.

If anyone is able to find the remarks from Dr. Mendelow, maybe it could be added to a Schroth thread or made into a new one so the information can be accessed by other people interested in Schroth. I know how hard it is to get any information from these surgeons on anything not surgically related.

Oh, and thank you all veterans for your service and sacrifice to our country. It is greatly appreciated.
Hi Ballet Mom...

The post is already in the Schroth thread. You can find it here.

http://www.scoliosis.org/forum/showthread.php?t=8632&page=10

Regards,
Linda

[Ballet Mom]

How funny!

I guess that's why I was unable to find the comment! :rolleyes:

[txmarinemom]

1. Keep reading. Keep researching. Remain focused. Look deeper.
2. USA physicians and business entrepreneurs are not waiting in line to market, sell, and recommend SpineCor for their patients, adult or adolescent--this is the point I was trying to make by mentioning Canada and the UK.
3. No evaluations and fittings the same day. How many times do you see a physician for a procedure and he or she just happens to have 3-4 hours to do the procedure that very day?

Joe's role is to provide us with up-to-date accurate information about all modalities, to maintain civility amongst members, and to keep us informed. It is not Joe's role, as President, whether a patient, too, or not, to endorse or dispel any one type of treatment.

Points I've made all along, NMFB. This thread was started by Joe in the first place because I asked questions about alliances and hawking certain treatments; I think it's a disservice.

Thank you for stating your views so eloquently.

[txmarinemom]

I have to disagree, MissEmmyF. I’ve heard plenty here…everything from paralysis to the tragic death of a young mother from Texas.

Chris, to set the record straight, that death - and yes, it was tragic - was caused by a MAJOR error on the part of Anesthesiology ... NOT fusion surgery.

And, funny ... in all the time I've been reading (vs. registered) here, paralysis has been reported as EXTREMELY rare.

[txmarinemom]

I am in total agreement with you on this, CD. BTW, when I returned to the forum after my surgery to report on my outcome, there was a PM in my mail box from a member suggesting that my doctor had been contacted regarding a statement I had made. What an invasion of privacy! Mamamax, you are very wise.

Chris WBS, although I have no idea if your claim that someone contacted your doctor is valid, I DO know you claimed here that a surgeon had told you fusion surgery was second only to AMPUTATION.

Maybe that had something to do with it (if, indeed, it happened).

[debbei]

Chris, to set the record straight, that death - and yes, it was tragic - was caused by a MAJOR error on the part of Anesthesiology ... NOT fusion surgery.

And, funny ... in all the time I've been reading (vs. registered) here, paralysis has been reported as EXTREMELY rare.

I am a worry wart by nature. Some of you know that from my posts before surgery :) However, prior to surgery I asked my Dr. outright. In 30 years experience, no one had died on his table and he had never paralyzed anyone. So I didn't concern myself with those things.

[Joe O'Brien]

Dear NMFB,

I have been travelling and tied up with other programs so I am not up to date on the postings in this thread. However, I welcome the opportunity to speak with you to learn more about who you are, and clarify my role and perspective. Please call me at 781-341-6333 if you would like to talk.

I have never considered myself a physician and have always fully disclosed that I am a patient who has been dedicated for thirty plus years to learning as much as possible to help my family and fellow patients. I have been blessed in this regard to be able to come to know and work with many of the top scientists, clinicians and surgeons dedicated to scoliosis throughout the world.

The primary mission of the National Scoliosis Foundation is the early detection and treatment of spinal deformities in order to minimize the effect they may have on children and families. Our daily service is to give Help & Hope to patients and families, and to educate, encourage and empower them to make the important healthcare decisions they will face in their journey. The combination of our mission and service encompasses every topic from genetic screening to the most recent surgical techniques.

Since before the time of Hippocrates there have been numerous methods to treat spinal deformities. None of these methods are foolproof or gauranteed. That includes Schroth, SpineCor, Stapling, and Spinal Fusion just to mention the most discussed items here. On the otherhand, each one of these methods have there purpose and role and may be appropriate and effective for a given patient. This Forum is not intended, nor capable enough, to diagnose and dictate to anyone what method they should or should not use. Hopefully, through thoughtful sharing of personal experience and honest respectful discussion of the facts and circumstances a peer to peer exhange can be an important resource.

[txmarinemom]

This Forum is not intended, nor capable enough, to diagnose and dictate to anyone what method they should or should not use. Hopefully, through thoughtful sharing of personal experience and honest respectful discussion of the facts and circumstances a peer to peer exhange can be an important resource.

Joe,

When your ties to Spinecor were revealed here, I naturally questioned it (and I don't feel I was disrespectful). In response, you targeted me by locking that thread and linking to it in your first post in this thread with the lead in "false and misleading remarks were inappropriately made against me. ClickHere!. "

How can you support your stated belief this forum shouldn't dictate patient choices for treatment when you specifically - and vocally - support two options ... Spinecor and Schroth?

Maybe I'm stupid, but I don't understand how you could possibly remain unbiased as you do interviews/YouTube videos to push Spinecor, and a large section of the NSF homepage lists Schroth practitioners (and there is NO proof Schroth works, no matter how long it's been around).

Joe, are you aware most SRS surgeons won't even prescribe Spinecor?

[Joe O'Brien]

[QUOTE=txmarinemom;77652]Points I've made all along, NMFB. This thread was started by Joe in the first place because I asked questions about alliances and hawking certain treatments; I think it's a disservice.


Please re-read post # 1. I started this thread because someone's comment was taken out of context and used to make false and misleading insuations against me. This is a disservice.

I also started this thread so that people on this forum could read my views about SpineCor etc, directly from me and not through the interpretation of someone else.

Your statement about "alliances and hawking certain treatments" is unfounded. This is a disservice.

[Jimbo]

Microswine!! xD

Good coining Pooka

[Pooka1]

Microswine!! xD

Good coining Pooka

Hey, that's what they are. :)

Little packets of love, perfect for cuddling.

[mariaf]

[QUOTE=txmarinemom;77652]Points I've made all along, NMFB. This thread was started by Joe in the first place because I asked questions about alliances and hawking certain treatments; I think it's a disservice.


Please re-read post # 1. I started this thread because someone's comment was taken out of context and used to make false and misleading insuations against me. This is a disservice.

I also started this thread so that people on this forum could read my views about SpineCor etc, directly from me and not through the interpretation of someone else.

Your statement about "alliances and hawking certain treatments" is unfounded. This is a disservice.

Joe,

No disrespect intended here so please don't interpret it that way, I'm just going to state some facts.

It is difficult for me to agree with your statement that Pam's claim that you hawk certain treatment methods is unfounded and a disservice. Here's why -

I have several e-mails that went back and forth between you and I (and others involved with putting together the VBS support site) where I asked you to provide a link to the VBS site here on NSF - and you initially said that you would do so provided that Dr. Betz (pioneer of VBS) endorsed the website.

I then was copied on an e-mail from him (or his PA on his behalf - I can't recall) stating that Dr. Betz did fully endorse the VBS website and in fact he and his PA helped provide us with information as we were building the site.

Still there was no link here on NSF to the VBS site.

When I brought this to your attention, you then asked that we provide a reciprocal link to the NSF site on our (VBS) site. We did this (but have now removed it because after many months and subsequent e-mail(s) to you again requesting that you add a link to the VBS site here, you did not do so.)

But yet as Pam pointed out there are links to groups that support and provide information on other treatments methods that I can only assume you support.

Because of the facts stated above it is difficult for me to believe you when you say there's no bias or alliances involved.

Regards,

[mamamax]

Dear NMFB,

I have been travelling and tied up with other programs so I am not up to date on the postings in this thread. However, I welcome the opportunity to speak with you to learn more about who you are, and clarify my role and perspective. Please call me at 781-341-6333 if you would like to talk.

I have never considered myself a physician and have always fully disclosed that I am a patient who has been dedicated for thirty plus years to learning as much as possible to help my family and fellow patients. I have been blessed in this regard to be able to come to know and work with many of the top scientists, clinicians and surgeons dedicated to scoliosis throughout the world.

The primary mission of the National Scoliosis Foundation is the early detection and treatment of spinal deformities in order to minimize the effect they may have on children and families. Our daily service is to give Help & Hope to patients and families, and to educate, encourage and empower them to make the important healthcare decisions they will face in their journey. The combination of our mission and service encompasses every topic from genetic screening to the most recent surgical techniques.

Since before the time of Hippocrates there have been numerous methods to treat spinal deformities. None of these methods are foolproof or gauranteed. That includes Schroth, SpineCor, Stapling, and Spinal Fusion just to mention the most discussed items here. On the otherhand, each one of these methods have there purpose and role and may be appropriate and effective for a given patient. This Forum is not intended, nor capable enough, to diagnose and dictate to anyone what method they should or should not use. Hopefully, through thoughtful sharing of personal experience and honest respectful discussion of the facts and circumstances a peer to peer exhange can be an important resource.

Hi Joe ~

Good to see you. I think most in forum understand the things you have said and hold a deep respect both for you as a man and the work that you do on behalf of those who have scoliosis (and their families). I've always found you to be very approachable as well, and while i've not picked up the phone to call you - i certainly feel as if i could.

The papers you write (as well as your collaborative work with those mentioned), are always a joy to find, highly informative and respected world wide for their honesty and truth.

I can't imagine what it would be like without NSF and the work that you do. You do us great service and your place in history serves to fulfill a much needed change towards the gathering of trusted information and its dissemination. You and your work - a blessing to us, our families, and the scientific community. Thank you.

[SLS]

Hi Joe,

I just want to say "hello" and it was a pleasure to meet you a couple of weeks ago when you were in Novi, MI, with Beth & Rhonda at my daughters orthopedic's office. Having you there was a pleasant surprise.

Thank you for all you do!

[Joe O'Brien]

[QUOTE=Joe O'Brien;78495]

Joe,

No disrespect intended here so please don't interpret it that way, I'm just going to state some facts.

It is difficult for me to agree with your statement that Pam's claim that you hawk certain treatment methods is unfounded and a disservice. Here's why -

I have several e-mails that went back and forth between you and I (and others involved with putting together the VBS support site) where I asked you to provide a link to the VBS site here on NSF - and you initially said that you would do so provided that Dr. Betz (pioneer of VBS) endorsed the website.

I then was copied on an e-mail from him (or his PA on his behalf - I can't recall) stating that Dr. Betz did fully endorse the VBS website and in fact he and his PA helped provide us with information as we were building the site.

Still there was no link here on NSF to the VBS site.

When I brought this to your attention, you then asked that we provide a reciprocal link to the NSF site on our (VBS) site. We did this (but have now removed it because after many months and subsequent e-mail(s) to you again requesting that you add a link to the VBS site here, you did not do so.)

But yet as Pam pointed out there are links to groups that support and provide information on other treatments methods that I can only assume you support.

Because of the facts stated above it is difficult for me to believe you when you say there's no bias or alliances involved.

Regards,

Hi Mariaf,

In the spirit of stating fact, the following is my actual email response in August 2008 regarding this issue;

In response to your email I would like to assure you that both the vertebral stapling procedure and the vertabalstapling.com website have indeed been highlighted on our website for quite some time.

First of all, Dr. Betz is one of our Medical Advisors and someone who we highly respect and have worked with for many years (see attached). Contrary to the impression in the email you received, I have been well aware of his vertebral stapling procedure for quite some time. In fact, we are one of the first organizations to advise the scoliosis community about his new procedure in our Spinal Connection newsletter in 2003, which is available in the Medical Update section of our website at Vertebral Stapling (http://www.scoliosis.org/resources/spinalconnection_win2003.pdf)

We publish, print and distribute this newsletter free of charge to 30,000 people. We also published an article on the Shriners Hospital, and we have personally advised thousands of patients via phone and email about the hospital and the procedure. As a follow up however we would be more than happy to do another Medical Update article with Dr. Betz to highlight the changes during the past five years.

With regard to the vertebralstapling.com link, as you can see in the following examples there is, and has been, a significant exposure on our website. So much so, that there has been a little concern at times that some of the posts may be perceived as somewhat more advertising/recruiting oriented than educational.

1. Maria has been an active member of our Forum since 2004 with 696 posts as of this email. As you can see in the attached copy of her most recent post in the Adolescent section of our Forum, the link to their website and the procedure is prominently displayed in her signature.

2. Amanda is also a member since 2006 and has 112 posts. As you can see in her signature, and in her posts back in February 2008 and September 2007, there is an open link and direct invitation to their website and their Forum.

3. In total our Forum has 8 different topical threads specifically titled “Vertebral Stapling” that reflect 295 posts which have been viewed 20,000 times. These numbers do not include the volume of posts on this topic in other threads throughout our Forum.

4. The attached Google search on Vertebral Stapling lists our website as the second reference.

We welcome the participation of members such as Maria & Amanda sharing their experiences and to date we have been very open and accommodating to them and others using our site as a feeder for their specific areas of interest. Our scoliosis.org website receives 3 million visits per year, and our Forum has 12,000 registered members with a searchable database by topic. “Vertebral Stapling” receives quite a large amount of exposure on our website, and any patient visiting us has a high probability of learning about this alternative to bracing. In addition, it appears highly likely that our website, Forum, and referrals have strongly contributed towards the exponential growth you mentioned for the vertebralstapling.com website. On the other hand, we would welcome a link on the VBS website to our website. I visited the site, but could not find a link. Is there one?

Yes, I definitely do have a passion for dissemination of credible information regarding diagnosis and treatment options to families who find themselves on the "scoliosis journey”. This passion is fueled by the experience of being a four time surgical patient, the father of 3/5 children with scoliosis, and a member of a family with 12/29 (40%) scoliosis patients. For the past thirty years I have tried to live out that passion as a Board member of the NSF, working with the SRS, IRSSD, Cotrel Foundation, SOSORT, AAOS, Medtronic, DePuy Spine and others around the world, in order to educate, encourage, and empower patients and families and give them the Help & Hope they are looking for. Please be assured that in so doing I will continue to advise patients about Dr. Betz, the vertebral stapling option, and the available support groups in as many ways as appropriate.

[Joe O'Brien]

Hi Joe ~

Good to see you. I think most in forum understand the things you have said and hold a deep respect both for you as a man and the work that you do on behalf of those who have scoliosis (and their families). I've always found you to be very approachable as well, and while i've not picked up the phone to call you - i certainly feel as if i could.

The papers you write (as well as your collaborative work with those mentioned), are always a joy to find, highly informative and respected world wide for their honesty and truth.

I can't imagine what it would be like without NSF and the work that you do. You do us great service and your place in history serves to fulfill a much needed change towards the gathering of trusted information and its dissemination. You and your work - a blessing to us, our families, and the scientific community. Thank you.


Thank you for your kind words.

[Joe O'Brien]

Hi Joe,

I just want to say "hello" and it was a pleasure to meet you a couple of weeks ago when you were in Novi, MI, with Beth & Rhonda at my daughters orthopedic's office. Having you there was a pleasant surprise.

Thank you for all you do!

Hello to you too SLS!

It was a pleasure to be with you all in Novi. I am blessed to do what I do, and I am very grateful that your orthopedist asked me to join him for the occasion. You are fortunate to have someone who has the patient's best interest in mind even when it may be out of the traditional comfort zone. Best wishes to you and your daughter. Please keep me apprised on how she is doing.

[nate03]

Joe,
As a co-moderator of the Vertebral Stapling Support Group, I would like to clarify that what we had specifically been hoping for was a link on this page of the NSF website:
http://scoliosis.org/links.php

We did have a link for several months on the www.vertebralstapling.com website, but after not finding a reciprocal link, we removed it recently because we felt NSF was not supportive of our efforts to provide a separate support group for parents considering VBS. I realize that the NSF provides a significant income financially to you personally - but honestly we are not trying to compete! None of us make any money from our site, and we do not ask for donations to support the site.

Would you be willing to add our site to your links page? We would be happy to put the link back if so. We are not trying to compete with your business - just wanted to give parents a support group and place to ask questions that would not get so "tense" when the topic comes up.

Best Regards,
Cara

[mariaf]

[QUOTE=mariaf;78528]

Hi Mariaf,

In the spirit of stating fact, the following is my actual email response in August 2008 regarding this issue;

In response to your email I would like to assure you that both the vertebral stapling procedure and the vertabalstapling.com website have indeed been highlighted on our website for quite some time.

First of all, Dr. Betz is one of our Medical Advisors and someone who we highly respect and have worked with for many years (see attached). Contrary to the impression in the email you received, I have been well aware of his vertebral stapling procedure for quite some time. In fact, we are one of the first organizations to advise the scoliosis community about his new procedure in our Spinal Connection newsletter in 2003, which is available in the Medical Update section of our website at Vertebral Stapling (http://www.scoliosis.org/resources/spinalconnection_win2003.pdf)

We publish, print and distribute this newsletter free of charge to 30,000 people. We also published an article on the Shriners Hospital, and we have personally advised thousands of patients via phone and email about the hospital and the procedure. As a follow up however we would be more than happy to do another Medical Update article with Dr. Betz to highlight the changes during the past five years.

With regard to the vertebralstapling.com link, as you can see in the following examples there is, and has been, a significant exposure on our website. So much so, that there has been a little concern at times that some of the posts may be perceived as somewhat more advertising/recruiting oriented than educational.

1. Maria has been an active member of our Forum since 2004 with 696 posts as of this email. As you can see in the attached copy of her most recent post in the Adolescent section of our Forum, the link to their website and the procedure is prominently displayed in her signature.

2. Amanda is also a member since 2006 and has 112 posts. As you can see in her signature, and in her posts back in February 2008 and September 2007, there is an open link and direct invitation to their website and their Forum.

3. In total our Forum has 8 different topical threads specifically titled “Vertebral Stapling” that reflect 295 posts which have been viewed 20,000 times. These numbers do not include the volume of posts on this topic in other threads throughout our Forum.

4. The attached Google search on Vertebral Stapling lists our website as the second reference.

We welcome the participation of members such as Maria & Amanda sharing their experiences and to date we have been very open and accommodating to them and others using our site as a feeder for their specific areas of interest. Our scoliosis.org website receives 3 million visits per year, and our Forum has 12,000 registered members with a searchable database by topic. “Vertebral Stapling” receives quite a large amount of exposure on our website, and any patient visiting us has a high probability of learning about this alternative to bracing. In addition, it appears highly likely that our website, Forum, and referrals have strongly contributed towards the exponential growth you mentioned for the vertebralstapling.com website. On the other hand, we would welcome a link on the VBS website to our website. I visited the site, but could not find a link. Is there one?

Yes, I definitely do have a passion for dissemination of credible information regarding diagnosis and treatment options to families who find themselves on the "scoliosis journey”. This passion is fueled by the experience of being a four time surgical patient, the father of 3/5 children with scoliosis, and a member of a family with 12/29 (40%) scoliosis patients. For the past thirty years I have tried to live out that passion as a Board member of the NSF, working with the SRS, IRSSD, Cotrel Foundation, SOSORT, AAOS, Medtronic, DePuy Spine and others around the world, in order to educate, encourage, and empower patients and families and give them the Help & Hope they are looking for. Please be assured that in so doing I will continue to advise patients about Dr. Betz, the vertebral stapling option, and the available support groups in as many ways as appropriate.

Hi Joe,

In the spirit of stating fact, here is my email to you from 2/4/09:



"Joe -

Further to my e-mail of 2/1, I wanted to let you know that I just finished discussing several updates to the VBS site with Amanda and Cara. In addition to adding the names of some additional surgeons who have begun performing VBS around the country, we will shortly be adding links to several other support sites such including Spinekids and NSF!

Although our site is still relatively new, and small in comparison to NSF, it is growing every day - and I, for one, am very excited about the number of families being touched and helped by the amount of information currently available on the internet. Not too many years ago (2000) when David was first diagnosed, there was not nearly as much information out there on the web as there is today.

Your site has been, and continues to be, a great resource for both patients and parents - and we at VBS hope to one day follow in its footsteps and be able to reach as many families of scoliosis patients as we possibly can!

Thanks in advance for your support and I look forward to working with you in the future to reach the above goals.

Best regards,

Maria"

It is obvious that even though you asked about a reciprocal link (which WAS added in February but subsequently taken down when no link to VBS appeared here on NSF), you were not interested in "reciprocating" to us by adding our link here.

Also, the email you copied here which you did send to me - still SKIRTS the issue of "will you add a link?" - you state facts about # of posts by me and Amanda. So?? What does that have to do with adding the link?

I would have preferred if you were candid from the get-go and said that you did not wish to do so, even though you have links related to other treatment methods. I would have rather been told honestly "it's my site and I only provide links to sites that support certain methods" rather than give me the run around for months.

I would have figured that if you truly think as highly of Dr. Betz as you claim to, it would have been a no-brainer for you.

Regards,

[Pooka1]

Hey, I have no first hand knowledge of any of this but I don't understand why O'Brien is singling out VBS from other treatment modalities in terms of entries on the links page. What could be the motivation for not linking to a VBS site versus linking to other treatment modality sites?

Is it possible he didn't understand you wanted a link on the links page?

Would it be the only link to experimental surgery? Might he not want to set a precedent?

If not then what is the reason?

This all sounds very strange with a high chance of misunderstanding.

[mariaf]

Hi Sharon,

While I understand how you could think there was a misunderstanding, I can assure you we were quite clear with our request with respect to adding a link.

That said, if you are correct - and Joe DID misunderstand us, it could be easily corrected by his adding the link to the VBS site now :)

[Pooka1]

Hi Sharon,

While I understand how you could think there was a misunderstanding, I can assure you we were quite clear with our request with respect to adding a link.

That said, if you are correct - and Joe DID misunderstand us, it could be easily corrected by his adding the link to the VBS site now :)

Good point. Let's "watch and wait" to see if he puts the link on the links page.

In the alternate, maybe he can state WHY he doesn't want to do that if it doesn't appear. If it simply doesn't appear without explanation then we are allowed to draw inferences I suppose.

I thought O'Brien was good on the "child" preacher problem we had here a while back and that was against interest based on his bio blurb. You'll note we don't have that problem any more. His letter to me in re that incident/debacle was fair and reasoned. I don't know him at all but just based on that, he seemed reasonable. Thus I find this apparent obfuscation confusing.

[mariaf]

Good point. Let's "watch and wait" to see if he puts the link on the links page.

In the alternate, maybe he can state WHY he doesn't want to do that if it doesn't appear. If it simply doesn't appear without explanation then we are allowed to draw inferences I suppose.


That makes perfect sense, Sharon. Thanks.

[Ballet Mom]

It seems to me that if a link was made to your VBS forum, it would be somewhat of an endorsement by the NSF of that procedure. It is certainly within their rights and duty to not endorse an experimental procedure until there are somewhat longterm studies associated with their safety and effectiveness. I actually agree with Mr. O'Brien's actions here. In fact, there could be legal ramifications in the future if he were to link to a site, in effect endorsing it, and then having it turn out to have problems associated with that surgery in the future.

I am not saying that there are problems with VBS, I am simply pointing out that they really don't know at this point, it is very new, and there are apparently many surgeons who don't believe it is the right thing to be doing.

Most of the links are to surgeon or professionally related organizations and where do you draw the line if every parent-oriented forum wished to be linked? I was easily able to find your forum off of your links in your post. It is nice that the NSF allows that type of advertising to occur.

[mariaf]

Hi Ballet Mom,

While I don't agree that NSF would be liable for merely posting a link to ANY site (would google be liable if folks found a site through them?), it WOULD be NSF's right to refuse to post a link for any reason. If NSF wants no liability for posting links to any site, all they have to do is state so on the same page, add a "disclaimer". (I've worked at a law firm for 25 years and one of the things we handle is liability claims).

(p.s. As soon as folks enter our site, they read a statement that we are not medical professionals, merely parents offering support and sharing experiences.)

In any event, that is not the point here.

Rather, my issue is that at first, I was asked by Joe to get Dr. Betz's endorsement of the site.

I did.

Still no link.

Then I was asked "why isn't there a reciprocal link to NSF on the VBS site"?

We added one.

Still no link.

I just don't appreciate being given the runaround - that's all. I think that's fair. All Joe had to say as "no" when we asked him about the link. One word.

Just to clarify - while a lot of surgeons still don't perform VBS, the number is growing every day. And perhaps more importantly, a lot of well known orthos at top-rated orthopedic hospitals now perform the surgery - not just at Shriners (although their doctors do have an excellent reputation) but in New York, Boston, California, St. Louis, Atlanta, etc. The list is posted on our site and most folks would recognize many of the names (Betz, Lubicky, Oswald, Hresko, Vitale etc. - I know I'm forgetting some and the list may not even be complete becaues as I said it seems we are constantly finding out about more doctors coming on board with VBS).

Also, many insurance companies now pay for VBS and no longer consider it "experimental".

I know you were not necessarily saying any of this - but I just wanted to clarify for folks who might misunderstand.

Regards,

[mariaf]

I was easily able to find your forum off of your links in your post. It is nice that the NSF allows that type of advertising to occur.

I'm very glad folks can find our forum. I don't think of it as "advertising" though (that term, to me, is usually associated with money - and as Cara pointed out, nobody on the VBS forum makes a cent - in fact we absorb some small costs associated with running the site) - rather, I think of it as making sure a parent who might be looking for information and support finds it.

That's all we are trying to do - not make money, not compete with anyone or any other methods of treatment - just help other parents as a way to "pay it forward".

[Ballet Mom]

So noted. Replace "advertising" with "publicity".

[Pooka1]

Also, many insurance companies now pay for VBS and no longer consider it "experimental".

So VBS is no longer considered experimental/investigatory by most insurance companies?

I'll stop referring to it as such if that is true.

I did a quick google search and the first two that came up said it was still investigatory and not medically necessary or something like that though I don't know if that means they won't pay.

On the other hand, I think there is presently MORE quality evidence in favor of VBS than for any brace yet insurance companies pay for that! :eek:

[Ballet Mom]

Until the first person who had that surgery is well into middle-age and beyond, and I believe someone mentioned these patients aren't much farther along than high school, nobody has any idea what the longterm effects are.
And parents should certainly know that when entertaining the idea of having their kids stapled.

It will be a wonderful thing if vertebral stapling is an answer to some of the scoliosis kids out there, until a long time into the future, nobody has any idea what the effect on the spine will be.

[Pooka1]

So VBS is no longer considered experimental/investigatory by most insurance companies?

I'll stop referring to it as such if that is true.

I did a quick google search and the first two that came up said it was still investigatory and not medically necessary or something like that though I don't know if that means they won't pay.

On the other hand, I think there is presently MORE quality evidence in favor of VBS than for any brace yet insurance companies pay for that! :eek:

ETA: Okay I have now come across the policies of several insurance companies and can't find one that covers VBS. An example: Cigna...

CIGNA does not cover the following treatments and devices for the management of scoliosis because they are considered experimental, investigational or unproven (this list may not be all-inclusive):

- vertebral body stapling

It's jarring to see VBS on the list with modalities that have no good evidence to date including electrical stimulation(!) and Spinecor. I predict VBS will be the first of these presently experimental modalities to be approved (by far!).

Also interesting is that most of the companies I checked consider the Providence brace to be experimental and won't cover the cost. I didn't know that that brace was considered more experimental than the Charleston, Boston, etc. even though these other braces are covered. That seems odd.

[SLS]

Also interesting is that most of the companies I checked consider the Providence brace to be experimental and won't cover the cost. I didn't know that that brace was considered more experimental than the Charleston, Boston, etc. even though these other braces are covered. That seems odd.

My daughters Providence Brace was fully covered by BCBS. She had it for about 8 months now.

[mariaf]

[QUOTE=Ballet Mom;78592]Until the first person who had that surgery is well into middle-age and beyond, and I believe someone mentioned these patients aren't much farther along than high school, nobody has any idea what the longterm effects are.
And parents should certainly know that when entertaining the idea of having their kids stapled.
QUOTE]

Ballet Mom,

I can tell you as someone who DID entertain the idea of VBS (and then decided to go through with it after MUCH consideration, soul searching and research) that we, as parents, DO realize that there are no patients who have reached middle age yet.

However, as with MANY procedures that have come into use in the past decades, that is the case as well.

I doubt any parent would opt for VBS if they had not first given it much thought, and did all of their homework.

Of course, for some it's not the best option. For others, it may be. As with most treatements alternatives, they all have their place.

[mariaf]

So VBS is no longer considered experimental/investigatory by most insurance companies?

I'll stop referring to it as such if that is true.

I did a quick google search and the first two that came up said it was still investigatory and not medically necessary or something like that though I don't know if that means they won't pay.

On the other hand, I think there is presently MORE quality evidence in favor of VBS than for any brace yet insurance companies pay for that! :eek:

Hi Sharon,

This is by no means a scientific survey, but I made the statement that some insurance companies do now cover VBS because several parents have told me their insurance companies HAVE paid for it. Some had to file appeals or get their doctors involved but there have definitely been cases where it WAS covered. There have been some surgeries performed out of Children's Hospital of Boston where I am quite sure insurance paid for it.

Most of the info I have on this is from talking to parents on the VBS site who actually dealt with this issue. If you look at the list of doctors there, now we have many who operate (no pun intended) outside of Shriners. So, if insurance wasn't covering VBS, at least in some instances, these doctors probably would not be performing the procedure.

Maybe I should start a thread on the VBS site asking parents of those who DID get their insurance companies to pay to tell me which companies they were so that I can share that info with others.

Take care,

[nate03]

Hi,
I just want to share my first hand knowledge regarding insurance and VBS. Harvard Pilgrim covered my son's surgery, Aetna & Blue Cross have covered several other VBS procedures at Boston Children's Hospital over the past 1.5 years. My son was the first at Boston - 12/07. Mass Health has denied coverage of VBS recently (this is the "free health care system" provided for eligible residents of Massachusetts).

From what I understand, insurance companies do not auto-approve VBS.........the drs need to appeal, and then it is usually covered.This is how it happened in our situation, as well as several other parents I have spoken to from Boston Children's Hospital. The documents available on-line are the official policies - but these can be and are successfully appealed for VBS.

I hate to see this thread become another volatile conversation about VBS. As any parent knows, the decisions regarding treatment for your child's scoliosis are very difficult. With any treatment - there are no promises.

Personally, we chose VBS because my son was not going to be compliant with bracing ( he hated the brace), and at age 11, and 40 degrees we were pretty sure he would be facing fusion. His curve was not "bad enough" for a more accepted treatment such as growing rods. So, I liked the premise that VBS will allow him to keep his flexibility.........no promises of successfully holding his curve I realize, but for us it was worth the chance that it would. If the staples don't hold his curve, he is still completely eligible for a fusion down the road. The 6 weeks of surgery and mild recovery was better for our family than fighting for 8+ years of bracing. I just couldn't see him wearing the brace still at 17 or 18+ years old ( heading off to college!) - family history (Dad is 6ft 5in.), and his growth plates indicated that he would grow until the age of 20. This was our own situation - and I realize each child/family is different. My other son was recently diagnosed with a 22 degree curve (age 14) - we are "watching and waiting" and I don't know what our decision will be if he progresses. I guess that's my point ~ none of us know what decision we will make for any individual circumstance.

I know that VBS is not a proven cure, or a good choice for every child with scoli. Also, I wanted to clarify that our support group was designed to support parents who have decided that VBS is the best option for their child.

~ Cara

[Pooka1]

Given the state of the evidence, I am not surprised VBS is sometimes covered now though I could find nothing online to that effect. I guess most people who get it covered have appealed as you say.

The more surprising thing is why bracing is covered given the conditions that spawned BRAIST. I think the insurance companies are grasping at any straw to avoid the cost of fusion surgery.

At this point, I would pick VBS over 23 hour/day bracing if I had a JIS kid and they qualified. No question. Not sure if I would have made that decision 4 years ago... I might have tried a night-time brace first. But after that, I likely would have picked VBS over full time bracing. Life is short.

[jillw]

Sharon, I think sometimes what you find online regarding insurance coverage isn't always up to date....also insurance policies , even within the same company, can vary in what they will cover (based upon the insurance companies contract with the employer/company that the insured works for). For example, everything i could find online re: blue cross indicated that it didn't cover spinecor. However, when I submitted a claim, it did cover the brace (without an appeal which really surprised me). Perhaps the things I had found online were a couple years old and coverage began more recently. My guess is the same might apply to VBS - perhaps Cigna has updated their policy. Or alternately, as Cara points out, often these procedures have to go through appeal, but have a good chance of ultimately being covered. I, for one, am glad to see more insurance companies willing to consider the providence brace, spinecor and VBS!

[mamamax]

Reviewing the website was interesting to me and i think it looks promising (maybe even one day down the road for adults).

I found the link below regarding some information - BlueCross BlueShield of Wisconsin (from 2007).

What is the translation?

http://www2.bluecrosswisconsin.com/provider/medpolicy/policies/SURG/vertebral_body_stapling.html

[Pooka1]

Reviewing the website was interesting to me and i think it looks promising (maybe even one day down the road for adults).

I found the link below regarding some information - BlueCross BlueShield of Wisconsin (from 2007).

What is the translation?

http://www2.bluecrosswisconsin.com/provider/medpolicy/policies/SURG/vertebral_body_stapling.html

That is stale. I only looked at links that were up to date. Still I found none that failed to refer to VBS as "investigational" or similar.

For now, I think it is still considered experimental surgery though I suspect that will change soon.

[mamamax]

That is stale. I only looked at links that were up to date. Still I found none that failed to refer to VBS as "investigational" or similar.

For now, I think it is still considered experimental surgery though I suspect that will change soon.

True 2007 - a little stale. I kept looking. Found this from 2009 (saying the same thing as 2007):

Medical Policy Update The following Anth...
Mar 31, 2009 ... of the Blue Cross and Blue Shield Association. ® ANTHEM i...
www.anthem.com/provider/noapplication/f1/s0/t0/pw_b130545.pd...

Seems to vary from state to state in the US?

[Pooka1]

True 2007 - a little stale. I kept looking. Found this from 2009 (saying the same thing as 2007):

Medical Policy Update The following Anth...
Mar 31, 2009 ... of the Blue Cross and Blue Shield Association. ® ANTHEM i...
www.anthem.com/provider/noapplication/f1/s0/t0/pw_b130545.pd...

Seems to vary from state to state in the US?

Yes that is one of the sites I referred to in re several how insurance companies still consider VBS investigational now.

[mariaf]

Just to update the info on which insurance companies have covered VBS, I want to add two more. I'm told that Tufts Health Plan covered the procedure in Boston, MA. Also Healthnet HMO covered the procedure in CA.

[Pooka1]

Maybe he didn't see this so I'm posting this...

Hi Sharon,

While I understand how you could think there was a misunderstanding, I can assure you we were quite clear with our request with respect to adding a link.

That said, if you are correct - and Joe DID misunderstand us, it could be easily corrected by his adding the link to the VBS site now :)

Maria posted this on 12 June 2009.

I can't find either a link to the VBS site or an explanation of why it wasn't added to this site.

Assuming he read this thread (and we don't know if he did or not), I conclude there is some reason that O'Brien does not want to add the link. Further, he doesn't want to say what the reason is. I agree with Maria there can be no misunderstanding at this point. Thus it is very awkward at this point and brings up questions of intellectual honesty.

I suspect it is his commitment to conservative treatments irrespective of the relative evidence level of those vice VBS. At this point, it is reasonable to suggest there is more positive evidence for VBS in just a few short years than for all the conservative treatments combined going back decades on that.

Anyone else have a guess why he neither will post the link nor explain why he won't?

[mariaf]

Anyone else have a guess why he neither will post the link nor explain why he won't?

I think you nailed it, Sharon (in your post above). Well said.

[mamamax]

He may be researching it himself personally? Seems Joe does do such things. Just my 2 cents.

[Pooka1]

He may be researching it himself personally? Seems Joe does do such things. Just my 2 cents.

I'm going to have to buzz you on that. Not even a little bit possible/credible.

Scoliosis is his game. If he hasn't researched VBS by now then scoliosis isn't his game (which it is).

By the way, how long do you think he would need to research VBS in order to make a decision? How many days? Weeks? Months? Years? Decades? Centuries? Millenia? Geological deep time periods? :D

And even if you were correct, he could have jumped back on here at any point since Maria has been asking him to post the link (which is measured in years at this point I think) and said he hasn't had the chance to research it (which is of course unbelievable).

Rather he posted some obfuscatory/obscurantist stuff upthread. Please review those posts.

Care to try again?

[Pooka1]

I think you nailed it, Sharon (in your post above). Well said.

He seems to be a man of faith, not evidence.

Faith in conservative treatments as against evidence for non-fusion (and possibly fusion) surgery.

I suggest that is no way to approach a serious medical issue (if that is indeed his approach).

I hope I'm wrong but that's how it's shaping up (if he has seen the thread and I assume he has because he started it).

[mamamax]

Well you know, i did read all the postings .. just giving him the benefit of the doubt. We do know he does his own research (Schroth, Spinecor, etc) - so maybe he is looking into VBS also. As to why he hasn't answered further - i dunno .. maybe he thinks he's answered the question - I'll go back and re-read his postings.

[Pooka1]

Well you know, i did read all the postings .. just giving him the benefit of the doubt. We do know he does his own research (Schroth, Spinecor, etc) - so maybe he is looking into VBS also. As to why he hasn't answered further - i dunno .. maybe he thinks he's answered the question - I'll go back and re-read his postings.

A third grader to tell you he has not.

[mamamax]

A third grader to tell you he has not.

Do you mean - a third grader could tell me he has not?

Anyway - who knows Sharon. There is a number to call.

Hey - I found two horses with scoliosis (bty).

[Pooka1]

Do you mean - a third grader could tell me he has not?

Ya think?

Anyway - who knows Sharon.

The third grader.

Hey - I found two horses with scoliosis (bty).

By amazing coincidence, in the recent issue of one of my horse rags is an article on horse scoliosis. I have ridden dozens and dozens of horse and encountered plenty more and never ran into one with scoliosis. Nor have I ever heard of a horse with scoliosis. I suggest it is exquisitely rare.

There is congenital and acquired in horses. I'm thinking the acquired has got to be due to a fall of some sort and subsequent injury. I think ill-fitting tack can be ruled out and even crooked riders.

[txmarinemom]

Hey, I have no first hand knowledge of any of this but I don't understand why O'Brien is singling out VBS from other treatment modalities in terms of entries on the links page. What could be the motivation for not linking to a VBS site versus linking to other treatment modality sites?

Is it possible he didn't understand you wanted a link on the links page?

Would it be the only link to experimental surgery? Might he not want to set a precedent?

If not then what is the reason?

This all sounds very strange with a high chance of misunderstanding.

Sharon,

I was the one initially corresponding with JO'B, and have all the emails where he did say he'd link to vertebralstapling.com. If you'd like to see them (or anyone, for that matter), email me.

It was NOT a misunderstanding.

Someone slow down the love slaves before they hit Texas, please ...

[txmarinemom]

It seems to me that if a link was made to your VBS forum, it would be somewhat of an endorsement by the NSF of that procedure. It is certainly within their rights and duty to not endorse an experimental procedure until there are somewhat longterm studies associated with their safety and effectiveness. I actually agree with Mr. O'Brien's actions here. In fact, there could be legal ramifications in the future if he were to link to a site, in effect endorsing it, and then having it turn out to have problems associated with that surgery in the future.

And in 90+ years, Schroth is proven? They are blasted all over the home page here.

Legal ramifications???

For providing info??? You, of all people, are constantly saying people should be aware of non-surgical alt tretaments. Babe, VBS isn't alt ... it's just a tad too ~icky~ for some. It isn't fusion, and it has a HELL of a lot better record than Spinecor OR Schroth. This site refuses to even post the current parameters and corollaries for VBS.

If I were Betz, I'd cut ties with NSF for talking out of both sides ... but that's just me.

I suppose the crushed hopes provided by Schroth and Spinecor (Joe's supported treatment choices) are more kind ...?

[txmarinemom]

At this point, I would pick VBS over 23 hour/day bracing if I had a JIS kid and they qualified. No question. Not sure if I would have made that decision 4 years ago... I might have tried a night-time brace first. But after that, I likely would have picked VBS over full time bracing. Life is short.

Amen, Sharon. Having been a braced child - and probably (in my day) what's now considered a prime VBS candidate - I WISH the option had been available to me.

I may stand alone in this view, but VBS vs. bracing (that BRAIST is actually set up to prove does NOT work) is a no brainer ...

[txmarinemom]

I'm going to have to buzz you on that. Not even a little bit possible/credible.

Scoliosis is his game. If he hasn't researched VBS by now then scoliosis isn't his game (which it is).

By the way, how long do you think he would need to research VBS in order to make a decision? How many days? Weeks? Months? Years? Decades? Centuries? Millenia? Geological deep time periods? :D

And even if you were correct, he could have jumped back on here at any point since Maria has been asking him to post the link (which is measured in years at this point I think) and said he hasn't had the chance to research it (which is of course unbelievable).

Rather he posted some obfuscatory/obscurantist stuff upthread. Please review those posts.

Care to try again?

Uh, yeah ...

In my emails with him, he speaks of no changes in the VBS arena since *2005* ... that is ABSOLUTELY not accurate.

[Pooka1]

Uh, yeah ...

In my emails with him, he speaks of no changes in the VBS arena since *2005* ... that is ABSOLUTELY not accurate.

I was right. He's a man of faith, not evidence.

He's a man of faith AS AGAINST evidence.

Science is a way of knowing. Faith is a way of pretending to know.

[Pooka1]

And in 90+ years, Schroth is proven? They are blasted all over the home page here.

Legal ramifications???

For providing info??? You, of all people, are constantly saying people should be aware of non-surgical alt tretaments. Babe, VBS isn't alt ... it's just a tad too ~icky~ for some. It isn't fusion, and it has a HELL of a lot better record than Spinecor OR Schroth. This site refuses to even post the current parameters and corollaries for VBS.

If I were Betz, I'd cut ties with NSF for talking out of both sides ... but that's just me.

I suppose the crushed hopes provided by Schroth and Spinecor (Joe's supported treatment choices) are more kind ...?

Faith versus evidence.

Emotion versus reason.

Wishful thinking versus science.

Stark choices that don't overlap even a little bit.

Before I came on here, if you had told me there were a bunch of people who think alternatives treatments MUST work simply because they can't conceive of them not, I wouldn't have believed you.

I find this forum jaw-dropping in that regard. In the kids section is one thing... in the adult section is remarkable.

Reality... not just a good idea.

[mamamax]

Faith versus evidence.

Emotion versus reason.

Wishful thinking versus science.

Stark choices that don't overlap even a little bit.

Before I came on here, if you had told me there were a bunch of people who think alternatives treatments MUST work simply because they can't conceive of them not, I wouldn't have believed you.

I find this forum jaw-dropping in that regard. In the kids section is one thing... in the adult section is remarkable.

Reality... not just a good idea.

What is jaw dropping to me is: that seemingly intellegent people would totally discount Schroth and Spinecore without in depth research and first hand experience ;)

Simple research by reading two books would clear up many things.

(1) Scoliosis and the Human Spine by Martha C. Hawes

(2) Three dimensional Treatment for Scoliosis by Christa Lehnert-Schroth

IF the intelligent people found here (who have not read these works) - were actually to study them .. This forum would be phenomenal.

[mariaf]

What is jaw dropping to me is: that seemingly intellegent people would totally discount Schroth and Spinecore without in depth research and first hand experience ;)




Mamamax,

If you've read the posts here, seemingly intelligent people have discounted VBS as well (which is their right), not just Spinecor and Schroth. What is your view on that?

In fact, back when discussions regarding VBS first began here (and were very heated) that was our argument as well - did the folks opposed to VBS (who, for some strange reason, also seemed to be the big supporters of Spinecor) have any personal experience with VBS as I and others did?? They did not. So, we were simply trying to share what we had learned through in-depth research, as well as our PERSONAL EXPERIENCES with others - but it was very difficult to do given the hostile responses by some folks here - and unfortunately, our moderators never interevened. I guess that's part of life - folks will form opinions whether they have personal experience or not.

By the way, Pam - I'm glad you saved all of those e-mails with Joe. For anyone who believes he is "still researching VBS" (as Sharon said, a third grader could figure out that's not the case), I'm going to estimate and say that our original discussions (and request for a link) began over a year ago (perhaps Pam or I can find the exact date). Just how long does he need to do his research???

[Pooka1]

What is jaw dropping to me is: that seemingly intellegent people would totally discount Schroth and Spinecore without in depth research and first hand experience ;)

Simple research by reading two books would clear up many things.

(1) Scoliosis and the Human Spine by Martha C. Hawes

(2) Three dimensional Treatment for Scoliosis by Christa Lehnert-Schroth

IF the intelligent people found here (who have not read these works) - were actually to study them .. This forum would be phenomenal.



Yes I see. In other words, the orthopedic surgeons are idiots.

You actually don't see the multiple flaws in your reasoning, do you?

[Pooka1]

Mamamax,

Apparently, seemingly intelligent people are discounting VBS as well (which is their right), not just Spinecor and Schroth. Was is your view on that?

By the way, Pam - I'm glad you saved all of those e-mails with Joe. For anyone who believe he is "still researching VBS", I'm going to estimate and say that our original discussion (and request for a link) began over a year ago (perhaps Pam or I can find the exact date) - just how long does he need to do his homework???

VBS has too much evidence. It would stand out like a sore thumb if lumped with Schroth and Spinecor that rely on faith at this point.

[Pooka1]

He may be researching it himself personally? Seems Joe does do such things. Just my 2 cents.

"Contrary to the impression in the email you received, I have been well aware of his vertebral stapling procedure for quite some time. In fact, we are one of the first organizations to advise the scoliosis community about his new procedure in our Spinal Connection newsletter in 2003, which is available in the Medical Update section of our website at Vertebral Stapling." -- Joe O'Brien, 2009

ETA: As I said, scoliosis is his game. It is ridiculous to suggest he wasn't up on it. What isn't ridiculous to suggest is that what gets linked to is simply where O'Brien's hopes and interests lie, as opposed to where the evidence leads. His site, his prerogative I suppose but that is not really being true to what facts are or are not out there.

Mamamax's response... "...

[concerned dad]

I havent been following this too much but the links page looks like it has mostly general info.

Just where do you want him to put the link?

Do you want him to put it between Spinekids and the National institute of Health? or after Quackwatch?

I dont see any SpineCor or Schroth links there.

I would agree with Joe that Maria's signature probably steers more traffic to the VBS site than any obscure link page.

Maybe he needs to hire a web guy to modify the site and is waiting to include it in the next update.

I think it would be equally (if not more) helpful to include a link to the european scoliosis support forum.
Also, maybe a link to the SOSORT website and the online Scoliosis Journal website. (I mean, Joe is active in SOSORT isnt he? Do you think they are offended he hasnt gotten around to linking to them - he does link to SRS. Does that mean he doesnt condone or respect SOSORT? I suspect he just hasnt gotten around to updating his links - he probably can look at page traffic and that page may get limited hits, so limited to make it not worthwhile to bother right now)

I also think that removing the link to here from the VBS site is petty. Who does that help and hurt? I dont think it hurts NSF but it does hurt the parents at VBS who may find useful info here.

Just my 2 cents.