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Thread: Setting the Record Straight

  1. #61
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    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.

  2. #62
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    Quote Originally Posted by Qikdraw View Post
    That was the thing that got me. Invented in Canada? I never knew that was a bad thing.
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  3. #63
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    Quote Originally Posted by Pooka1 View Post
    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?

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

  4. #64
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    Quote Originally Posted by Qikdraw View Post
    Well I get what a horse is, but what is a microswine?

    Do your animals say 'eh!'?
    Microswine = guinea pigs. I coined the term.

    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  5. #65
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    Quote Originally Posted by concerned dad View Post
    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


  6. #66
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    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  7. #67
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    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]

  8. #68
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    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.

  9. #69
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    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.
    Last edited by mamamax; 05-17-2009 at 11:33 AM.

  10. #70
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    Quote Originally Posted by NMFB View Post
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  11. #71
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    Quote Originally Posted by NMFB View Post
    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?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  12. #72
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    Quote Originally Posted by MichelleK View Post
    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.

    Last edited by mamamax; 05-17-2009 at 01:30 PM.

  13. #73
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    Quote Originally Posted by nmfb View Post
    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!!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

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

    http://pediatricspinefoundation.org/

  14. #74
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    Quote Originally Posted by NMFB View Post
    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.

  15. #75
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    Quote Originally Posted by mamamax View Post
    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.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

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