Originally posted by hdugger
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Stop trying to convince that official western medical community is the only option..
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Originally posted by hduggerBut, bracing is often effective and yet parents are strongly counseled *against* bracing on this forum.
And there is some evidence that bracing might only delay fusion in some cases. So these kids will have brace AND fusion. These parents are running a risk of damaging their relationship with their kids later as can been seen in some testimonials.Last edited by Pooka1; 03-06-2013, 11:00 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."
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Originally posted by hduggerIf you undermine the parent and suggest that doctors have no idea what they're doing but annonymous people on the net do, you run the risk of forcing that child into surgery.
The point is bracing is the standard of care. Given BrAIST, it seems like many surgeons are bracing as a form of defensive medicine against law suits. Who can blame them?
I am sure the majority would agree with Sponseller that while they are hopeful bracing works, there is no good evidence it works. Equally, I am sure a majority would agree with Newton and colleague that there is a HUGE over-treatment rate with bracing.
I think you have an issue with patients and parents being told facts if it doesn't come from the surgeon. You obviously could not object to surgeons stating EXACTLY what I have said but can't say that here. They don't cease to become facts just because a surgeon doesn't mention it.
Basically, you can't disprove my comments about the surgeons so all you can do is object to them being said AT ALL. It is outrageous that you think people should not be as informed as possible.Last edited by Pooka1; 03-06-2013, 11:08 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."
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Originally posted by hduggerWith compliancy and full day wear, I believe it is quite high. Mayo clinic (if I remember right) would be the source on this - they cut their surgery rate by really stressing compliance and full day bracing.
By the way, that study hasn't been published yet to my knowledge. I last looked about a month ago. You are referring to a talk that was given. If he tried to publish it and failed, you need to know that so you stop posting misleading material.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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Originally posted by hduggerSo, IMO, suggesting to parents that they ignore their doctor is just marching these kids right into the surgical room.
And there is the issue of fusion delay through 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 hduggerWith compliancy and full day wear, I believe it is quite high. Mayo clinic (if I remember right) would be the source on this - they cut their surgery rate by really stressing compliance and full day bracing.
So, IMO, suggesting to parents that they ignore their doctor is just marching these kids right into the surgical room. Again, it's the only flagrantly unethical behavior I've seen on this forum.
Putting that aside for a moment, when you say that anyone is suggesting to parents that they ignore their doctor, this assumes that all doctors believe in bracing (I'm talking AIS here) and that's an incorrect assumption.
And I still would like to know what the success rate for bracing in AIS is.
To say that one facility (even though it's the Mayo Clinic which is well-regarded but not particularly known to specialize in treating scoliosis, or even children for that matter) has 'cut their surgery rate' really doesn't tell us what the bracing success rate for AIS is.
That was the question that was asked and I would still like to know the answer.Last edited by mariaf; 03-06-2013, 12:13 PM.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/
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Originally posted by hduggerGiven the Mayo Clinic series, with no "gold standard" braced child progressing to surgery, is it ethical to tell those parents to ignore their doctor and not brace?
Not published yet...
http://www.ncbi.nlm.nih.gov/pubmed?t...r_uid=16122214
Small sample size and data selection were some of the issues I think were involved in this study. Whatever the issues, they prevented this study and everyone's favorite bracing study (TM), Katz et al., (2010) rise to the level of halting BrAIST. That is the bottom line.
The study problems may explain why it hasn't been published while the lead author is publishing all kinds of other studies. If it doesn't get published, can we count on you being honest and mentioning it was just a talk that wasn't published?Last edited by Pooka1; 03-06-2013, 02:05 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."
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Originally posted by hdugger-In this series there was NO progression to surgery if:
-initial curve magnitude was less than 40 degrees and
-bracewear greater than fifteen hours per day"
But I find it hard to believe that if you took thousands (or tens of thousands) of kids with 35-40 degree curves and had them wear braces 15 hours a day that none of them would progress.
In addition, where does that leave those who end up with, say 38 or 39 degree curves that are more likely to progress later on in the opinion of some experts?
I'm not saying that if I had a child with a 38 degree curve at the end of growth that I would necessarily have them fused - but they may need fusion later on - or they may have pain/other issues from their curve.
So would that patient have been better off being braced or, say, having tethering when they had the opportunity?
Who knows?
And that doesn't even touch on those kids (and we know they exist, albeit outside of "this series") whose curves progress despite bracing. They are left with only fusion once the window for what some like to call 'experimental' methods like tethering and VBS are off the table.
But, again, the question is 'does anyone know the success rate for bracing with regard to AIS'?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/
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Originally posted by hduggerGiven the Mayo Clinic series, with no "gold standard" braced child progressing to surgery, is it ethical to tell those parents to ignore their doctor and not brace?
For example, when the "series" (I still don't know exactly that is meant by that term as I have never heard it used before in this respect) referred to all patients with curves under 40 degrees, that could have been a group where the vast majority were WELL UNDER 40 degrees, even under 20 or 25 degrees. I'm just showing an example of what I mean by how easy it is to skew data, particularly when we're not even talking about a published, peer-reviewed study.
So the results of this "series" don't hold much water.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/
Comment
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Originally posted by hduggerOn the psychological effects, I don't mean to downplay the difficulty of brace wear....
I agree that having scoliosis in general - or facing surgery of any kind, for a child, is nothing close to being easy.
But we were talking about the challenges of brace wear.
I'm not going to get into a long debate about it, but as the parent of 2 sons (now ages 14 and 25) and a daughter (age 21), my experience has been that one of the most difficult things for them during their teenage years is when something makes them obviously different from their peers.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/
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Here's the thread with a bunch of lay folks and one expert (McIntire) talking about that Mayo Clinic study...
http://www.scoliosis.org/forum/showt...ht=mayo+clinicLast edited by Pooka1; 03-07-2013, 06:36 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."
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Originally posted by hduggerBut the Mayo Clinic report sort of woke me up to something that seemed important.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 hduggerOn ignoring doctors, I'm talking about parents who come on the forum after being prescribed a brace by their doctor. So, in those cases, 100% of their doctors have recommended it to them. Given the Mayo Clinic series, with no "gold standard" braced child progressing to surgery, is it ethical to tell those parents to ignore their doctor and not brace?
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Originally posted by Pooka1 View PostI have posted a direct quote from Sponseller, an expert in this field. He admits there is no good evidence bracing works. (He did not distinguish between JIS and AIS but I think he would make that distinction since bracing clearly has not only held some JIS curves but reduced them, at least prior to the growth spurt.) This is also why Hey can been seen on his blog as saying bracing pretty much can work in JIS (though he changed some wording slightly in response to a letter from Celia as I recall). He is more sanguine for AIS of course as far as I can tell. Here he talks in terms of balancing quality of life which is another way of saying the evidence isn't there in my opinion. If the evidence was there, he would simply say that.
And anyone who claims there is evidence bracing works in AIS has to explain the BrAIST study. That's probably combined 1000 years of experience among those surgeons that all agree it is ethical to randomize kids to a non-brace control group.
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Originally posted by flerc View PostAnd certainly, when these people talk about what a brace may do or not, if all their comprehension is reduced to articles readed, they should to understand that studies suggesting braces not works, only may have sense if were used under the obvious necessary conditions.
If it is the case that many kids simply can't or won't wear a 23 hour a day hard brace, that is also an important result. Kids are more than their disease. They matter more than their disease.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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