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More Good Evidence Bracing Works in AIS

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  • Originally posted by Elisa View Post
    "More Good Evidence Bracing Works in AIS " is the thread title. I can totally see the advantage of bracing young children who are diagnosed with scoliosis so as to allow time for them to grow as much as possible and reach their potential height. I'd have done that if my son wasn't already an adolescent at the time of his diagnosis. That said, if he had been a young child, I'd definitely look into VBS these days over bracing; sounds like it's a great option.
    Yes that is true but it's easy to miss details like a thread title.

    The bottom line is the ethics scales with the evidence when discussing a difficult treatment like hard bracing for several years. For AIS, the evidence is low so the ethics becomes more questionable. With JIS, the evidence is not quite as bad as far as I can tell and the stakes are higher because much more growth lies ahead. There, the evidence and reality of the situation shifts hard bracing to being somewhat more ethical though VBS might be even more ethical.
    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 Elisa View Post
      "More Good Evidence Bracing Works in AIS " is the thread title. I can totally see the advantage of bracing young children who are diagnosed with scoliosis so as to allow time for them to grow as much as possible and reach their potential height. I'd have done that if my son wasn't already an adolescent at the time of his diagnosis. That said, if he had been a young child, I'd definitely look into VBS these days over bracing; sounds like it's a great option.
      VBS has less than ten years worth of data behind it. It's amazing to me that the people on this board require braces to show perfect effectiveness for every brace wearer's entire lifetime in order for bracing to be effective, but when surgery is involved the time span shortens down to ten or twenty years in order for the procedure to be considered effective.

      No one knows the longterm effects of VBS. Hopefully it all turns out wonderfully for everyone involved. To some parents, the unknown longterm risk is an okay tradeoff in order to not have their child burdened by a brace. That's certainly their prerogative, as long as by their choosing a surgery to avoid bracing doesn't cause the rest of the scoli kids to not get treated due to the expense of some kids surgeries.

      Comment


      • Originally posted by hdugger
        Following back on Ballet Mom's earlier question, what kind of sense do the Scolioscore people make of this study?

        Either "mental troubles that keep people from successfully bracing" is the genetic thing being measured by their test, or these results just don't mesh with their results at all.
        I think Axial Biotech needs to answer this question.

        A good study would be for Axial Biotech or other medical researcher to run the Scoliscore test on the kids who were involved with the bracing study at Mayo Clinic that showed that for ten years all kids who completed bracing successfully did not progress to surgery if their initial curve was less than 40 degrees and bracewear was more than fifteen hours per day and see what the Scoliscores of those kids are. It would certainly be in the public interest for this study to be performed and probably should be because scientists should always strive to disprove their own theories and see if they are disproved.

        Comment


        • Originally posted by Ballet Mom View Post
          I think Axial Biotech needs to answer this question.

          A good study would be for Axial Biotech or other medical researcher to run the Scoliscore test on the kids who were involved with the bracing study at Mayo Clinic that showed that for ten years all kids who completed bracing successfully did not progress to surgery if their initial curve was less than 40 degrees and bracewear was more than fifteen hours per day and see what the Scoliscores of those kids are. It would certainly be in the public interest for this study to be performed and probably should be because scientists should always strive to disprove their own theories and see if they are disproved.
          LOL... after you've found all the people (especially women, many of whom change their last names) who were included in a study cohort from some years ago, I'm sure someone would love to do that study.
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

          Comment


          • Originally posted by LindaRacine View Post
            LOL... after you've found all the people (especially women, many of whom change their last names) who were included in a study cohort from some years ago, I'm sure someone would love to do that study.
            LOL?? In this day and age I think that would be a cinch. If someone would like to pay me, I'd be happy to hunt them down. Most would probably be easily found, any tough ones could be given to a private eye type search firm. Unless someone is actively trying to hide themselves these days, I doubt it's very hard to find anyone.

            Comment


            • I was laughing because you so oversimplified the issue. The issues include (but probably are not limited to):
              • The need for IRB approval to try to find the patients.
              • Funds for finding the people
              • Overcoming the fact that previous attempts at finding patients who participated in research many years previously have been largely unsuccessful.
              • Many of the patients will not have appropriate insurance, so the researchers would need funds to bring patients in to survey and x-ray them.
              • Many of the patients will have no interest in participating in additional research. (For example, patients of the ProDISC-C trial have been offered $500 plus expenses for a single follow-up visit (plus a $200 bonus, for a total of $1,200 for 2 sequential yearly visits), and a large number are still not interested.)


              I totally agree that it would be very beneficial to get the follow-up data, but I'm not holding my breath.
              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
              ---------------------------------------------------------------------------------------------------------------------------------------------------
              Surgery 2/10/93 A/P fusion T4-L3
              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

              Comment


              • Originally posted by Ballet Mom View Post
                VBS has less than ten years worth of data behind it. It's amazing to me that the people on this board require braces to show perfect effectiveness for every brace wearer's entire lifetime in order for bracing to be effective, but when surgery is involved the time span shortens down to ten or twenty years in order for the procedure to be considered effective.

                No one knows the longterm effects of VBS. Hopefully it all turns out wonderfully for everyone involved. To some parents, the unknown longterm risk is an okay tradeoff in order to not have their child burdened by a brace. That's certainly their prerogative, as long as by their choosing a surgery to avoid bracing doesn't cause the rest of the scoli kids to not get treated due to the expense of some kids surgeries.
                VBS has actually been performed for a little over a decade, but you are close enough. To date, there have been virtually no major issues or problems. Patients have no restrictions and can and are participating in activities such as gymnastics, hockey, baseball, horseback riding, etc.

                That said, you are correct that we do not have a crystal ball to know what, if any, problems could arise for any child down the road whether they had VBS, fusion or no treatment at all.

                However, I don't think we could ask for any better results for the first 11 or 12 years with regard to VBS.

                One thing that folks need to remember, too, is that while nobody 'wants' surgery for their child, for those children who have undergone VBS, at least some of them would otherwise almost certainly have required fusion.

                For example, we have children who have had VBS in the past decade or so who had significant curves (30, 35, 40, a few even higher) at the time of surgery and have now, several years later, completed growth with, in many cases, a somewhat straighter spine -- and no need for fusion.

                Then we have children like my son and another child, a girl, who comes to mind who were 5 or 6 years old with 40 and 42 degree curves, respectively prior to VBS. Both are teens/pre-teens now with curves in the 20's. There is nobody that could convince me they would be better off not having had VBS. In fact, both this girl's mom and myself were told by orthos at the time, prior to VBS, that our children would require fusion at some point and/or perhaps growing rods before that.

                Again, I am talking about 'certain' patients in certain situations -- and I think that is KEY to the whole VBS issue, that (like all forms of treatment) it is bested suited for a select group of patients, not everyone.
                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


                • long term bracing

                  I didn't notice this being addressed, but figured I'd ask... I know that after my daughter got her DENTAL braces off, her orthodontist made retainers (night time 'braces') for her to wear every night to bed, for as long as she wants her corrected teeth to stay straight.

                  Is there any information that suggests that for people that don't want their spines to continue to move after skeletal maturity, especially if they are a good candidate for progressing, a night time brace will at least continue to hold what they have? I WOULD HAVE done this if I had thought of it back when I was in the borderline zone. Even if a person is not compliant their whole lives, and stops wearing a night time brace one day, couldn't it work to hold the skeletally mature back as long as the person is compliant?

                  Is it that sometimes spines, like teeth, want to go somewhere despite our express wishes! as soon as we set them free?
                  Emily, 43
                  approx 50 T, 36 T/L

                  Comment


                  • Originally posted by 3sisters View Post
                    I didn't notice this being addressed, but figured I'd ask... I know that after my daughter got her DENTAL braces off, her orthodontist made retainers (night time 'braces') for her to wear every night to bed, for as long as she wants her corrected teeth to stay straight.

                    Is there any information that suggests that for people that don't want their spines to continue to move after skeletal maturity, especially if they are a good candidate for progressing, a night time brace will at least continue to hold what they have? I WOULD HAVE done this if I had thought of it back when I was in the borderline zone. Even if a person is not compliant their whole lives, and stops wearing a night time brace one day, couldn't it work to hold the skeletally mature back as long as the person is compliant?

                    Is it that sometimes spines, like teeth, want to go somewhere despite our express wishes! as soon as we set them free?
                    This is a very good analogy. I used the same analogy to express why I felt bracing could work during major growth spurts, especially in younger children. My daughter had a dental appliance designed to stretch her jaw, as she has severe tooth crowing. It worked so well that she never needed braces because her jaw actually got bigger, which made room for all of her teeth. Now, if one waits until their child is an adolescent, the bracing of the teeth and retainer thereafter makes perfect sense to compare with spine bracing, as both aren't quite finished, but still the structures are large enough that they may try to regain their earlier shape. But we have to remember that a jaw is a fixed structure, whereas a spine is not. When bracing teeth, they are actually messing with the socket design, which apparently does not really change to the degree that one would hope. I have seen teeth return to a similar pattern if not retained. But as an example, my sister, who had braces as an ADULT, had her teeth try to go back to where they were pre-brace. The good news is that even though they shifted, they are not nearly as crooked as they were before bracing. There is just no way to tell with spine bracing outcomes with absolute surety. That's why studies are so difficult. I wish you and your daughter all the best in your endeavors to keep this wretched condition under control.
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

                    Comment


                    • The difference between straightening and preventing progression

                      rohrer,

                      I think the one major difference between orthodontia and spinal bracing is the desired outcome: with orthodontia we want/expect the teeth to stay in their new, straightened position. With spinal bracing for scoliosis, the goal is to prevent further progression, ONLY. There is really no hope or expectation of permanent improvement, and all good orthopedists will tell you that if you ask. The brace holds the spine in a straightened position during growth so that the curve does not get worse due to unbalanced spinal loading. So I think with that in mind that gives you your answer of why an indefinite night-time brace once growth is complete is not going to do any good (much as we might like it to).
                      Gayle, age 50
                      Oct 2010 fusion T8-sacrum w/ pelvic fixation
                      Feb 2012 lumbar revision for broken rods @ L2-3-4
                      Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                      mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                      2010 VBS Dr Luhmann Shriners St Louis
                      2017 curves stable/skeletely mature

                      also mom of Torrey, 12 y/o son, 16* T, stable

                      Comment


                      • I would like to know what exactly is going on during JIS prior to the adolescent growth spurt because there are definitely cases of corrections, not just holding, of the curve, with bracing. We don't see that in (straight) AIS as Gayle mentioned and I wonder why. Maybe if they knew the answer to that then they could rule bracing in or out for just stopping progression for straight AIS on a theoretical basis. As things stand now, there is no clear population of straight AIS cases that have definitively avoided surgery due to bracing in the short or long term to my knowledge. There is some indication in the short term but it has not been shown rigorously to my knowledge.
                        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 Pooka1 View Post
                          I would like to know what exactly is going on during JIS prior to the adolescent growth spurt because there are definitely cases of corrections, not just holding, of the curve, with bracing. We don't see that in (straight) AIS as Gayle mentioned and I wonder why. Maybe if they knew the answer to that then they could rule bracing in or out for just stopping progression for straight AIS on a theoretical basis. As things stand now, there is no clear population of straight AIS cases that have definitively avoided surgery due to bracing in the short or long term to my knowledge. There is some indication in the short term but it has not been shown rigorously to my knowledge.
                          JIS cases are more likely to actually correct the curve because they have the time to actually retrain the growth of the spine to slowly correct the curve over many years, from what I understand.

                          Bracing in AIS have allowed most of those who have a good correction from the brace and wear it as directed to avoid surgery. In the case of the Mayo Clinic, all of those who met those two requirements in the last ten years have avoided surgery.

                          Comment


                          • Originally posted by 3sisters View Post
                            I didn't notice this being addressed, but figured I'd ask... I know that after my daughter got her DENTAL braces off, her orthodontist made retainers (night time 'braces') for her to wear every night to bed, for as long as she wants her corrected teeth to stay straight.

                            Is there any information that suggests that for people that don't want their spines to continue to move after skeletal maturity, especially if they are a good candidate for progressing, a night time brace will at least continue to hold what they have? I WOULD HAVE done this if I had thought of it back when I was in the borderline zone. Even if a person is not compliant their whole lives, and stops wearing a night time brace one day, couldn't it work to hold the skeletally mature back as long as the person is compliant?

                            Is it that sometimes spines, like teeth, want to go somewhere despite our express wishes! as soon as we set them free?
                            I think the hard thing would be to get the patient who had worn the brace for all those years prior to maturity to continue to wear it. They can hardly wait to burn the brace at the end of it all. It's not like these are totally innocuous devices to wear like a retainer.

                            If you are interested, there are exercises that might work instead of using the brace to stop progression after maturity. You might look into the side shift threads, torso rotations, and perhaps Schroth. None have been proven for sure but it would beat the brace. Probably just keeping your spine strong and flexible would also be of great benefit.

                            Anyhow, despite all the fuss that is made on this board, most of the moderate curves do not appear to progress in adulthood. There have been studies in Sweden and I think Norway that show no increase in moderate curves over decades...which is good news. Nothing is going to change the fact that some people get degenerative changes that cause scoliosis progression especially in lumbar curves, even for those without scoliosis, at least at this point in time. Also, those with bigger curves have a higher likelihood of progression, especially over fifty degrees.

                            Comment


                            • adult progression

                              Originally posted by leahdragonfly View Post
                              rohrer,

                              With spinal bracing for scoliosis, the goal is to prevent further progression, ONLY.
                              Perhaps I didn't clarify what I was trying to say. My thought along with this is, I hope to prevent progression in ME, an adult. I'm ok where I am, but the progression could stop now, please! One or two degrees a year, from my current acceptable curves, is not desirable. Do adults with continuing AIS ever talk about employing a night time brace to stop progression?
                              Emily, 43
                              approx 50 T, 36 T/L

                              Comment


                              • It would be very unusual as it would be hard to find a doctor to prescribe one as they are not known to stop progression in adults. There was one lady who did manage to get herself a brace (a Cheneau?) and had a blog about it, maybe someone can remember her name. She could tell you if it helped or not. Perhaps she is still around.

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