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Thread: More Good Evidence Bracing Works in AIS

  1. #31
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    Quote Originally Posted by hdugger View Post
    That's an important point in these discussions. For some reason, bracing is considered to have "failed" if the patient ever requires surgery, while, for people needing revision surgery it's somehow deemed "successful" because it gave them 10 or 20 good years. Either needing surgery later in life is a failure for both, or putting it off for 10 or 20 years is a success for both. We can't make an adequate comparison unless success and failure are defined in the same way for both.
    I mostly agree with this. Yes, you should have the same standards of success or failure for any option you choose. Obviously you are going to have failed surgeries where a doctor makes a mistake or there is hardware failure, etc. However, it isn't a failed surgery if the revision isn't due to scoliosos. Yes, joints wear out above and below fusions, but the unfused spine also has assymetric wear on it as well that can cause problems needing fusion. If this were strictly the case in a braced individual, I would not consider that a brace failure. What I was talking about was needing surgery because of progressive curves despite being braced. Watch and wait people, like myself, also fall into that category. Watching someone until they are 18 and saying they are out of danger because they have a subsurgical curve is, in my opinion, a failure if that person needs surgery for curve progression later on. Some docs are very misleading and should NEVER tell anyone they are out of danger of progression. Unfortunately, there are no good answers to this dilemma. You have limited choices: Do nothing, brace, use some other convention (chiropractic, PT, etc.) or surgery of some kind. Unfortunately, the patients or the parents of the patients aren't always able to choose. They are limited by the doctor, who always knows best (sarcastic), or insurance coverage. I guess if this were a simple problem, there wouldn't be the need to have forums like this for sufferers and their families. It's good to bring all of the options out in the open. Again, I'm not for or against bracing. I think it is an individual choice. Every surgery has its risks and, unfortunately, sometimes it is fatal. So it's nothing to take lightly, as I'm sure no one here does.

  2. #32
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    Quote Originally Posted by hdugger View Post
    That's an important point in these discussions. For some reason, bracing is considered to have "failed" if the patient ever requires surgery, while, for people needing revision surgery it's somehow deemed "successful" because it gave them 10 or 20 good years. Either needing surgery later in life is a failure for both, or putting it off for 10 or 20 years is a success for both. We can't make an adequate comparison unless success and failure are defined in the same way for both.
    Yes.

    Quote Originally Posted by Pooka1 View Post
    Bracing of kids is done to avoid surgery FULL STOP. Defining "failure" in that context is beyond obvious. There is no fuzzy area here.

    ...

    Success of bracing and success of surgery are apples and oranges because one is to avoid the other.
    I'm not sure it's apples and oranges. If someone is braced and then requires surgery later, while I don't see that as an outright failure of bracing, I see the point. But if someone gets surgery and then later requires an additional surgery, well, they both kind of seem similar to me. I guess it depends on how you phrase the 'goal' of the treatment. You're saying that bracing is only used to avoid surgery forever. So then what are the goals of surgery? To avoid continued progression forever? To straighten the spine/reduce the curve forever? To avoid future surgery forever? To 'cure' scoliosis forever? Based on how someone phrases what the goals of a treatment will determine if it's considered successful or a failure in the long-term. And I would say that the time frame of the goals should be included in that, e.g. avoid progression through adolescence, avoid surgery forever, etc... If the goals of bracing and surgery are similar, e.g. avoid progression forever, then success can be judged similarly. Thus, if the brace wearer or surgical patient eventually progresses in the future then both treatments would be deemed a failure. (Although I wouldn't say that. But just using this as an example for the discussion.)

    Quote Originally Posted by rohrer01 View Post
    Some docs are very misleading and should NEVER tell anyone they are out of danger of progression.
    This is right on. Coming from what I said above, how the goals of bracing or surgery are explained is very important. In either case, saying that anyone with a measurable curve won't have to worry about progression or other issues should never be done. Even those with a low scoliscore. Long-term follow-up should always be a part of scoli management.

  3. #33
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    Quote Originally Posted by Kevin_Mc View Post
    I'm not sure it's apples and oranges. If someone is braced and then requires surgery later, while I don't see that as an outright failure of bracing, I see the point. But if someone gets surgery and then later requires an additional surgery, well, they both kind of seem similar to me. I guess it depends on how you phrase the 'goal' of the treatment. You're saying that bracing is only used to avoid surgery forever. So then what are the goals of surgery? To avoid continued progression forever? To straighten the spine/reduce the curve forever? To avoid future surgery forever? To 'cure' scoliosis forever? Based on how someone phrases what the goals of a treatment will determine if it's considered successful or a failure in the long-term. And I would say that the time frame of the goals should be included in that, e.g. avoid progression through adolescence, avoid surgery forever, etc... If the goals of bracing and surgery are similar, e.g. avoid progression forever, then success can be judged similarly. Thus, if the brace wearer or surgical patient eventually progresses in the future then both treatments would be deemed a failure. (Although I wouldn't say that. But just using this as an example for the discussion.)
    I suggest it is fair to say that not a single person in the known universe would agree to brace their child unless they thought it would avoid surgery for life. Not a single one. That is the sole role and goal of bracing as far as I know. I hope that doesn't put too fine a point on it.

    Thus brace failure is measured in surgery at any point whatsoever. That logically and necessarily follows from the fact that bracing is only done to avoid surgery. You have to disagree that that is the sole reason why bracing it done to argue this follow on. I don't believe that can be credibly argued.

    It seems likely that the odds of needing a revision (or more than one revisions) are IDENTICAL in the braced population and the non-braced population. They appear to be related to things like curve location and bone character rather than if surgery is required due to failed bracing or as an initial treatment. If that is the case then bracing success and surgical success can't be judged similarly in principle. The question becomes what is least successful:

    1. bracing plus surgery versus surgery

    2. bracing plus surgery plus revision versus surgery plus revision

    Bracing will always be worse because it is one more treatment and one that explicitly failed.
    Sharon, mother of identical twin girls with scoliosis

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  4. #34
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    Quote Originally Posted by Pooka1 View Post
    I suggest it is fair to say that not a single person in the known universe would agree to brace their child unless they thought it would avoid surgery for life. Not a single one. That is the sole role and goal of bracing as far as I know. I hope that doesn't put too fine a point on it.

    Thus brace failure is measured in surgery at any point whatsoever. That logically and necessarily follows from the fact that bracing is only done to avoid surgery. You have to disagree that that is the sole reason why bracing it done to argue this follow on. I don't believe that can be credibly argued.
    I don't buy that for an instant. I braced my child to stop her progression, not to avoid surgery and I suspect any number of parents AND patients would do this. I wanted to stop the deformity that was occurring to her back. If that cessation of progression caused my child to avoid surgery, that's great....whether it's for twenty years, thirty years or her entire life.

    I seriously don't buy the argument that most curves under fifty degrees are progressing to surgery as adults. The medical textbooks and medical journal papers all have that breakout of the almost guaranteed no progression if a thoracic curve stops at under thirty degrees when physically mature, possible to progress between 30 and 50, and at fifty degrees you're almost guaranteed of progression. I don't believe these surgeons would still be being taught this, if orthopedists had found it to not be true. I am aware that lumbar curves are likely to progress at a much lower Cobb angle.

    People with normal straight spines deteriorate into lumbar scoliosis with age too.

    Quote Originally Posted by Pooka1 View Post
    It seems likely that the odds of needing a revision (or more than one revisions) are IDENTICAL in the braced population and the non-braced population. They appear to be related to things like curve location and bone character rather than if surgery is required due to failed bracing or as an initial treatment. If that is the case then bracing success and surgical success can't be judged similarly in principle. The question becomes what is least successful:

    1. bracing plus surgery versus surgery

    2. bracing plus surgery plus revision versus surgery plus revision

    Bracing will always be worse because it is one more treatment and one that explicitly failed.

    You forgot bracing that never needs surgery at the cost of five or ten thousand dollars for one or two braces, versus surgery at $200,000+ and one or two or three more revision surgeries varying from a half a million to a million dollars each, along with possible pain medication and disability for life etc. for some of those patients.

    Or bracing that holds off surgery for thirty years at a cost of five or ten thousand dollars and a new, improved surgery in thirty years and no revision needed in the future.

  5. #35
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    Quote Originally Posted by hdugger View Post
    I think there's a real error in doctors giving the impression that any scoliosis treatment is a "cure." Once you have a curve in your spine, there is no way to cure it - i.e., return the spine to its previous, natural, uncurved state. You'll always be at greater risk of back problems, no matter what you do or don't do. I've been to lots of doctor appointments, and I've heard lots of people talking about seeing a doctor as a teenager, and I don't think I've ever heard of a doctor making that point clear.

    Scoliosis is a little like cancer - you can go into remission (not have back problems), but you can never be cured.
    My daughter's orthopedist told us that my daughter is likely to have no progression in life. He did say that if she stayed physically active she shouldn't have any back problems just like other people, however, if she turned into a couch potato, she could end up with back problems in middle age just like any other couch potato in middle age.

  6. #36
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    Quote Originally Posted by Ballet Mom View Post
    I don't buy that for an instant. I braced my child to stop her progression, not to avoid surgery and I suspect any number of parents AND patients would do this. I wanted to stop the deformity that was occurring to her back. If that cessation of progression caused my child to avoid surgery, that's great....whether it's for twenty years, thirty years or her entire life.
    So you are saying you braced your child for cosmetic reasons? Really? Seriously? Does you daughter know this??? Didn't you tell her the bracing was to hopefully avoid surgery? How is that remotely ethical?

    Would you have put her in a 23 hour/day hard brace strictly for cosmetic reasons??? Didn't you lament that the surgeon only gave her a night-time brace and not a 23 hour/day brace? Do you think he was bracing her for anything other than surgery avoidance?

    Hello?

    You forgot bracing that never needs surgery at the cost of five or ten thousand dollars for one or two braces, versus surgery at $200,000+ and one or two or three more revision surgeries varying from a half a million to a million dollars each, along with possible pain medication and disability for life etc. for some of those patients.
    We were discussing bracing failure. If you want to add back unnecessary bracing then we can start a new thread.

    Or bracing that holds off surgery for thirty years at a cost of five or ten thousand dollars and a new, improved surgery in thirty years and no revision needed in the future.
    That is an excellent point. Best one you have made in this thread. But I still challenge you to find a single person who would brace their child unless they thought the goal was to avoid surgery for life. It can't be done.
    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. #37
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    Quote Originally Posted by Pooka1 View Post
    So you are saying you braced your child for cosmetic reasons? Really? Seriously? Does you daughter know this??? Didn't you tell her the bracing was to hopefully avoid surgery? How is that remotely ethical?

    Would you have put her in a 23 hour/day hard brace strictly for cosmetic reasons??? Didn't you lament that the surgeon only gave her a night-time brace and not a 23 hour/day brace? Do you think he was bracing her for anything other than surgery avoidance?

    Hello?


    We were discussing bracing failure. If you want to add back unnecessary bracing then we can start a new thread.


    That is an excellent point. Best one you have made in this thread. But I still challenge you to find a single person who would brace their child unless they thought the goal was to avoid surgery for life. It can't be done.
    Excuse me. You were the one that wanted your daughter to take off her brace and progress to surgery because you thought your first daughter's surgically corrected spine looked better than the twisted one. And you were the one that wanted to decrease the Cobb angle at which surgery is done because of the cosmetics. Exactly what is wrong with trying to keep a kid from becoming deformed? It's simply a bizarre thought. I suppose you'll go around and start telling women with breast reconstructive surgery they can't have it, and kids with cleft lips can't get that fixed. It's all in their head to want to look normal.

  8. #38
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    Quote Originally Posted by hdugger View Post
    Pooka's doctor told her something similar about post surgical spines, but I'm not at all certain about either claim. I do believe that, under a certain degree of curve, you're unlikely to progress, but I can't accept that a curved spine (or a curved-then-fused spine) is the same as a spine that has never curved.
    I don't know, but there are a whole heck of a lot of old ex-ballet dancers with scoliosis who are still actively teaching ballet class. It doesn't seem to stop them.

  9. #39
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    Quote Originally Posted by Ballet Mom View Post
    Excuse me. You were the one that wanted your daughter to take off her brace and progress to surgery because you thought your first daughter's surgically corrected spine looked better than the twisted one.
    No I said my daughter was lamenting that if her brace worked her back would not look as good as her sister's back. And I never told her to take her brace off. She wanted to try the brace.

    And finally, whether or not a child wears a brace does not have a predictable relationship to progressing to surgery. So your comment claiming I was linking taking the brace off with necessarily progressing to surgery is patent nonsense. It is a non-sequitor. Only YOU link non-brace wear with necessary progression to surgery, not me.

    And you were the one that wanted to decrease the Cobb angle at which surgery is done because of the cosmetics.
    That is false. My reason to lower the Cobb angle trigger for surgery is IDENTICAL to Dr. Hey's reason... to avoid longer fusion to involve the lumbar due to waiting.
    Last edited by Pooka1; 11-04-2011 at 05:42 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  10. #40
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    Quote Originally Posted by Ballet Mom View Post
    Excuse me.
    Excuse me. There is no good evidence that anything a parent does or does not do changes the propensity for surgery. I realize you disagree and you are entitled to your opinions. But you are not entitled to your own facts. We have been down this road of you equating taking a child out of a brace with "letting" them progress to surgery. It's patent nonsense.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  11. #41
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    Quote Originally Posted by Pooka1 View Post
    Bracing of kids is done to avoid surgery FULL STOP. Defining "failure" in that context is beyond obvious. There is no fuzzy area here.

    There is no sane person who would brace if the hope wasn't to avoid surgery. Nobody. You can't even get some kids to comply even when they have been convinced (i.e., lied to) that not wearing the brace will result in surgery.

    Success of bracing and success of surgery are apples and oranges because one is to avoid the other.
    I think we may eventually find that a large percentage of people with scoliosis end up needing treatment in later life, whether nothing is done, bracing is done, or surgery is done. If bracing for a few years kept someone out of surgery for 40 years, I can see that some people might make that choice. It would essentially be the same as someone having surgery as a teen and then having to have a revision 40 years later. (It possible that the brace may allow some of these folks to have only one surgery instead of two.)

    As I said, we really need to know what happens to these folks in 20, 30, 40, & 50 years.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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  12. #42
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    Quote Originally Posted by LindaRacine View Post
    I think we may eventually find that a large percentage of people with scoliosis end up needing treatment in later life, whether nothing is done, bracing is done, or surgery is done. If bracing for a few years kept someone out of surgery for 40 years, I can see that some people might make that choice. It would essentially be the same as someone having surgery as a teen and then having to have a revision 40 years later. (It possible that the brace may allow some of these folks to have only one surgery instead of two.)
    Perhaps you could show us some actual stats on that, otherwise it's just your opinion perhaps reflecting a surgical group that is sought out by old people with problems with their aging scoliotic spines and your experience with this website for people with scoliosis decisions/problems. It may not reflect the general population at all. It doesn't jive with anything I've seen in the research papers, book chapters, what the actual surgeons state or what I see in the ballet world with their high incidence of scoliosis. And I see no reason why these surgeons wouldn't be telling the truth.

    Quote Originally Posted by LindaRacine View Post
    As I said, we really need to know what happens to these folks in 20, 30, 40, & 50 years
    We'd all like to see that, the only info I've seen is from the Swedes which looks very promising for those who have been braced with a moderate curve. Is anyone actually planning on studying it or they're only interested in studying surgeries? It's only been hundreds of years since people were being braced for scoliosis, it really does seem like there should be some longterm outcomes at this point.[/QUOTE]

  13. #43
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    Quote Originally Posted by Ballet Mom View Post
    Perhaps you could show us some actual stats on that, otherwise it's just your opinion perhaps reflecting a surgical group that is sought out by old people with problems with their aging scoliotic spines and your experience with this website for people with scoliosis decisions/problems. It may not reflect the general population at all. It doesn't jive with anything I've seen in the research papers, book chapters, what the actual surgeons state or what I see in the ballet world with their high incidence of scoliosis. And I see no reason why these surgeons wouldn't be telling the truth.
    I'm thinking that starting the post with "I'M THINKING" is enough of a clue for people to understand it is my opinion.

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  14. #44
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    Thanks for the enlightenment. I thought you might have some special information from your work at UCSF that would overturn all the bracing orthodoxy, but apparently not.

  15. #45
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    Quote Originally Posted by Ballet Mom View Post

    I seriously don't buy the argument that most curves under fifty degrees are progressing to surgery as adults. The medical textbooks and medical journal papers all have that breakout of the almost guaranteed no progression if a thoracic curve stops at under thirty degrees when physically mature, possible to progress between 30 and 50, and at fifty degrees you're almost guaranteed of progression. I don't believe these surgeons would still be being taught this, if orthopedists had found it to not be true. I am aware that lumbar curves are likely to progress at a much lower Cobb angle.
    Then can the medical textbooks explain why my thoracic compensatory curve of 18-20* at skeletal maturity is now 38* and now a structural curve? As far as I know it has progressed 10* in the last five years. The primary curve has progressed some, but not nearly that much. I don't think you can give sweeping generalizations with this disorder. As a sufferer, this is the wall that I keep coming up against. Doctors really need to learn to quit looking at numbers and look more at curve types and individual musculature and associated pain to make better decisions as to what kind of treatment they recommend.

    The medical "professionals" taught bloodletting for many, many years.
    Last edited by rohrer01; 11-04-2011 at 12:19 AM. Reason: an additional thought

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