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  • Originally posted by hdugger
    For AIS, especially in those growth spurts, only bracing [...] seem[s] to help.
    Please post the evidence for this statement. I think it is false.
    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


    • Originally posted by hdugger
      But, bracing is often effective and yet parents are strongly counseled *against* bracing on this forum.
      Newton and co-author demonstrated an OVERtreatment rate of about 9 to 1. That means most kids who are braced do not need it. I think you are misinterpreting the kids who did not progress as being helped by the brace. The vast majority of braced kids are likely braced needlessly. This fact doesn't seem to register with many parents who, not having to wear the brace themselves, would probably brace with a 1%, 0.1% or 0.00001% chance of success. The kids who might have been helped are probably lost in the noise of the natural history and study analysis. That's the reality of it.

      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."

      Comment


      • Originally posted by hdugger
        If 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 not that surgeons have no idea what they are doing. The only people who say that are the folk scientists.

        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."

        Comment


        • Originally posted by hdugger
          With 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.
          Send a telegram to the BrAIST coordinator. Tell her to stop randomizing kids to a no-brace control group. I dare you.

          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."

          Comment


          • Originally posted by hdugger
            So, IMO, suggesting to parents that they ignore their doctor is just marching these kids right into the surgical room.
            No actually the main effect would be to drastically decrease the over-treatment rate. Please read up on Newton's work (I don't know if it is published yet) and other work on this.

            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


            • Originally posted by hdugger
              With 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.
              Forget for the moment, what a challenge it is to tell a 12 or 13 year old to wear a brace full time, to school, with friends, etc. I could write a book about some stories I have heard. I just had dinner with a family whose daughter had tethering 3 or 4 months ago - and mom said that for the first time in a long time there was no crying, threatening, pouting or yelling going on in their house. She said that her daughter had become withdrawn and depressed when she had to wear the brace, and was just now starting to return to her old personality (which was always, according to mom, bubbly and happy).

              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/

              Comment


              • Originally posted by hdugger
                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?
                Yes it is ethical to give people information. It is always ethical to give people information. I know you disagree.

                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."

                Comment


                • 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"
                  I'm sure that's what may have happened "in this series" whatever that means in terms of number of patients, etc.

                  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/

                  Comment


                  • Originally posted by hdugger
                    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?
                    Again, why are we taking this "series" which, if I understand correctly, is not even a published study and using it as the sole measuring stick? I think we are all intelligent enough to realize that data can usually be skewed to lean one way or another by choosing exactly which patients to include, etc.

                    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


                    • Originally posted by hdugger
                      On the psychological effects, I don't mean to downplay the difficulty of brace wear....
                      I would hope not.

                      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/

                      Comment


                      • 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+clinic
                        Last 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."

                        Comment


                        • Originally posted by hdugger
                          But the Mayo Clinic report sort of woke me up to something that seemed important.
                          You may or may not find it concerning that a study that may not be publishable is what woke you up. I'm guessing not.
                          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


                          • Originally posted by hdugger
                            On 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?
                            Of course is not ethical, but is all part of the same game. What may you say about doing hard categorical assertions without proving or blaming parents facing dramatic situations for not doing what they believe they must to do? Certainly it would be fine that at least, these people explain what kind of knowledge has about scoliosis. People new in this forum reading so many assertions and judgements may believe they are wise people, able to know what method may work for someone or not and why.. and of course just only reading articles has nothing to do with a real comprehension as people really new may confuse.

                            Comment


                            • Originally posted by Pooka1 View Post
                              I 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.
                              And 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.

                              Comment


                              • Originally posted by flerc View Post
                                And 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.
                                Fer,

                                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."

                                Comment

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