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Thread: New and confused

  1. #31
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    Quote Originally Posted by skevimc View Post
    I'm new to the forum but have been in the scoliosis world for a while. There was a very interesting study/commentary published by Stephano Negrini in 2006 in the online journal Scoliosis. He describes the social acceptability of scoliosis and various treatment options. One of the most interesting findings was that with only a 25% risk of progression, 87% of patients/families would want to do some kind of exercise for treatment. The main idea, I think, is that families and patients feel better about their condition if they feel like they have some kind of control.
    I have heard it said more than once that braces are for parents, not for patients. Though there is no evidence showing braces can't work in principle or practice, I can understand why some think braces are only for parents.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  2. #32
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    And again, so I can't help but to believe your inference is to not brace. Now the question is which studies merits consideration in treatment options. Is it the ones that say bracing is ineffective or those that say it is effective? Is there a study on the beliefs and opinions of those who braced with progression and no longer believe it a viable and valid treatment option? Anyway, stall bars are built, glued, and clamped. The kiddo, even though quite young, was to her third Schroth treatment today. I find the studies done on Schroth in Europe to be worthy of consideration as a determining factor in treatment options for us. Here we go!!! 11 years old with the will and determination of someone will beyond her years. She's amazing!!!

  3. #33
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    Quote Originally Posted by LindaRacine View Post
    Hi Brian...

    Welcome. I hope you find help here.

    I have to say that, when the first time someone posts to a forum, it's got nothing to do with scoliosis, but is sort of a rehash of all the battles that have gone before, one has to wonder what your true motivation is. If you really want to connect to only those who agree with you, Pooka's advice above is probably appropriate.

    Regards,
    Linda
    Quite the opposite really. This has everything to do with scoliosis. I don't care to find only those who agree, I want as many different opinions as possible. I would add Pooka to the ignore list, but feel that would not give me the scope of insight I want. Pooka is obviously strong in her convictions as others are in theirs. I respect everyone of them and their opinions. Pooka just has her way of doing things from what I've read, and though posts are traded in disagreement, I respect her opinion. My true motivation that you question is to find out as much as possible and find support that I may be able to also offer others as I live and learn this new way of life!

  4. #34
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    Quote Originally Posted by bbrian35 View Post
    And again, so I can't help but to believe your inference is to not brace. Now the question is which studies merits consideration in treatment options. Is it the ones that say bracing is ineffective or those that say it is effective?
    It's the ones that are well designed. I suggest it is no accident that you triage papers based on results. You will never get anywhere doing that.

    Is there a study on the beliefs and opinions of those who braced with progression and no longer believe it a viable and valid treatment option?
    I don't think you understand that beliefs are entirely irrelevant in science/medicine. Rational people accept facts based on evidence. Belief doesn't enter into it.

    Anyway, stall bars are built, glued, and clamped. The kiddo, even though quite young, was to her third Schroth treatment today. I find the studies done on Schroth in Europe to be worthy of consideration as a determining factor in treatment options for us. Here we go!!! 11 years old with the will and determination of someone will beyond her years. She's amazing!!!
    I'm sure she is. I hope it works for her.
    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. #35
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    This is an area where Pooka and I disagree. My sense is that science has utterly failed in sorting out the usefulness of bracing. Given this, I'd be inclined to find a good orthopedic surgeon who you trust and get their guidance.

    Although doctors don't have good studies to rely on, they're in the trenches day in and out and are far more likely than any of us here to have a sense of how bracing might affect the progression of your daughter's curve.

    Pooka, if you want to take this discussion down to the research area, we can parce through all of the studies, but I don't feel it's appropriate for us to do that here, given the collective state of our knowledge

  6. #36
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    Quote Originally Posted by hdugger View Post
    This is an area where Pooka and I disagree. My sense is that science has utterly failed in sorting out the usefulness of bracing. Given this, I'd be inclined to find a good orthopedic surgeon who you trust and get their guidance.
    Well yes but I suggest it is not through any fault of the researchers. Some things are inherently hard to study including highly variable things like scoliosis.

    Although doctors don't have good studies to rely on, they're in the trenches day in and out and are far more likely than any of us here to have a sense of how bracing might affect the progression of your daughter's curve.
    One of the results of the equipoise paper was the sheer magnitude of the spread of opinion on certain categories of brace efficacy. The question is what is driving this large range of opinion? Maybe expertise of the orthotists they work with. Maybe something else.

    Pooka, if you want to take this discussion down to the research area, we can parse through all of the studies, but I don't feel it's appropriate for us to do that here, given the collective state of our knowledge
    I take your point.
    Last edited by Pooka1; 01-12-2010 at 09:19 PM.
    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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    I'm fairly certain the physical therapy and exercise can't hurt. I agree that reputable clinicians who have experience in treating scoliosis is where I have to place my trust. They have treated the patients and have documented the results of their treatment. Unlike Pooka, I don't perform valid studies with control groups based on scientific method. I am simply hoping to meet people who have or are going through life affected by scoliosis, and that they might be so kind as to share their experiences and what has helped them get from diagnosis to where they are now, what they've done for treatment, what they find works for them, and let them know I greatly appreciate anything they share. The PM's are heart-warming and sincere! I can't get that from a published study. I can always post in the research area if I want the data and the links to all of these studies.

  8. #38
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    Quote Originally Posted by mamamax View Post
    I wasn't supposed to progress, but I did.
    Do you mind expanding on this comment? Specifically what was your curve angle at maturity?

    Thanks.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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


    "We are all African."

  9. #39
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    Quote Originally Posted by Pooka1 View Post
    Well yes but I suggest it is not through any fault of the researchers. Some things are inherently hard to study including highly variable things like scoliosis.
    Given my background, I'm unlikely to blame the researchers

    Ethically, it's just very, very hard to get between a doctor and their patients in order to run a randomized study. If bracing works, you don't want to deny patients the opportunity. And, if it doesn't work, you don't want to assign them to years of discomfort. So, I don't blame anyone for the state of research. It just is what it is.

    Quote Originally Posted by Pooka1 View Post
    One of the results of the equipoise paper was the sheer magnitude of the spread of opinion on certain categories of brace efficacy. The question is what is driving this large range of opinion? Maybe expertise of the orthotists they work with. Maybe something else.
    I'm still reeling from that one proceeding where the doctors present: 1) Couldn't agree on where to fuse the patient, 2) Couldn't agree on *whether* to fuse the patient, and 3) Couldn't agree if the main problem they faced was stopping the clock on a progressing curve or to starting the clock on revision surgery.

    Given that they can't agree on surgery, which is, presumably, the thing they know the most about, it doesn't surprise me that they can't agree on bracing.
    Last edited by hdugger; 01-12-2010 at 09:52 PM.

  10. #40
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    Quote Originally Posted by hdugger View Post

    I'm still reeling from that one proceeding where the doctors present: 1) Couldn't agree on where to fuse the patient, 2) Couldn't agree on *whether* to fuse the patient, and 3) Couldn't agree if the main problem they faced was stopping the clock on a progressing curve or to starting the clock on revision surgery.

    Given that they can't agree on surgery, which is, presumably, the thing they know the most about, it doesn't surprise me that they can't agree on bracing.
    I know! I was floored by that. I think the range of opinion on those cases was as large or larger than that for bracing efficacy which, given the stakes, could be very concerning. That said, it could be the case that there is more than one right answer although there are certainly wrong answers in surgery.
    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

    I don't think you understand that beliefs are entirely irrelevant in science/medicine. Rational people accept facts based on evidence. Belief doesn't enter into it.

    I would disagree with this comment. The placebo effect is very well documented. As well, when considering acceptance of outcome, I would suggest that the beliefs of the family about how adequate their treatment was can have a big impact on quality of life, which is commonly overlooked in favor of quantifiable outcomes. I know the SRS-22 questionnaire tries to address some of these issues. As well, this was one of the main ideas behind the Negrini paper I mentioned.

    That being said... I think I understand the point you are trying to make. Certainly from a "what treatment should I pick for my daughter" point of view. Whether a patient 'believes' the treatment worked or not is irrelevant. Overall outcome is the primary issue.

  12. #42
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    Quote Originally Posted by skevimc View Post
    I would disagree with this comment. The placebo effect is very well documented. As well, when considering acceptance of outcome, I would suggest that the beliefs of the family about how adequate their treatment was can have a big impact on quality of life, which is commonly overlooked in favor of quantifiable outcomes. I know the SRS-22 questionnaire tries to address some of these issues. As well, this was one of the main ideas behind the Negrini paper I mentioned.

    That being said... I think I understand the point you are trying to make. Certainly from a "what treatment should I pick for my daughter" point of view. Whether a patient 'believes' the treatment worked or not is irrelevant. Overall outcome is the primary issue.
    Yes but the placebo effect is real and therefore part of science. Just as researchers can't explain exactly how Li works to ameliorate manic depression doesn't negate the fact that it can be demonstrated to be effective.

    In this and everything, I try to draws a line between on the one hand scientific facts that are accepted based on evidence and on the other hand hopes, wishes and dreams that are believed on faith.

    This doesn't mean researchers can't hope a study turns out a particular way or that having a faith can't really help people... the latter has been shown... religious people tend to live a somewhat longer and happier life on average than heathens like myself. That doesn't prove the truth of the underlying claim though; It is the placebo effect which is real. Wishful thinking really does have a slight benefit in this regard. That is science because there is evidence.
    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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