Originally posted by skevimc
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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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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!!!
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Originally posted by LindaRacine View PostHi 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
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Originally posted by bbrian35 View PostAnd 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!!!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."
Comment
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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
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Originally posted by hdugger View PostThis 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 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 knowledgeLast edited by Pooka1; 01-12-2010, 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."
Comment
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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.
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Originally posted by mamamax View PostI wasn't supposed to progress, but I did.
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."
Comment
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Originally posted by Pooka1 View PostWell 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.
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.
Originally posted by Pooka1 View PostOne 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.
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, 09:52 PM.
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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.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."
Comment
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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.
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Originally posted by skevimc View PostI 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.
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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