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  • #16
    Originally posted by Ballet Mom View Post
    I found this article which discusses apparently the same study that must have been done in 2007. The patient numbers are a little smaller so I think Dr. Shaughnessy must have updated this study with the new patients they've had for the current presentation. They also state that they're looking to place sensors in the braces for routine wear when they're available. So I assume most of the data is without the sensors and possibly the newer data might have sensor data.

    The specific criteria for inclusion is on the video, but I really don't know why they don't have more scoli kids coming through their doors. Dr. Shaughnessy does state that zero patients not progressing to surgery has actually held for ten years if they were less than 40 degrees and wore their brace for fifteen hours minimum.

    http://www.oandpbusinessnews.com/view.aspx?rid=58855
    Some of the follow-up was as short as 3 months.
    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


    • #17
      Originally posted by Ballet Mom View Post
      The orthopedists would know if most peoples braced spines were collapsing later on in life. They're not dumb.
      Not even close to factual. Most pediatric specialists do not see patients once they turn 18. We get people in our clinic all the time, who were braced as kids, were told that they were good to go, and who have now progressed on to needing surgery. Most of the time, their pediatric doctors don't have a clue that these patients are requiring additional treatment.
      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


      • #18
        Yes, I see going back to the video that they had to actually complete the brace treatment.

        Your studies are all approximately twenty years time frame. Longterm outcomes would mean another twenty or thirty years on top of that. They simply don't know the longterm outcomes of these surgical procedures. I remember the bracing study done by the Swedes that showed no increase in curve size of 35 degree curves after twenty years time and that still wasn't a long enough time to convince this group that bracing was worthwhile because something might happen decades later. The same thing applies to surgical results.

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        • #19
          Originally posted by LindaRacine View Post
          Not even close to factual. Most pediatric specialists do not see patients once they turn 18. We get people in our clinic all the time, who were braced as kids, were told that they were good to go, and who have now progressed on to needing surgery. Most of the time, their pediatric doctors don't have a clue that these patients are requiring additional treatment.
          I didn't presume that it would be the pediatric surgeons that would be seeing the patients. But I would certainly think that if the adult surgeons felt most curves were progressing if the patient had been braced, they'd be letting the pediatric surgeons know about it. And what portion of that is due to lumbar degeneration due to an aging spine that would probably occur if they had been fused anyway or even due to the fusion itself?

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          • #20
            Originally posted by Ballet Mom View Post
            Yes, I see going back to the video that they had to actually complete the brace treatment.

            Your studies are all approximately twenty years time frame. Longterm outcomes would mean another twenty or thirty years on top of that. They simply don't know the longterm outcomes of these surgical procedures. I remember the bracing study done by the Swedes that showed no increase in curve size of 35 degree curves after twenty years time and that still wasn't a long enough time to convince this group that bracing was worthwhile because something might happen decades later. The same thing applies to surgical results.
            I totally agree that longer term studies are needed. However, those studies I posted have at least 10 times the follow-up than the bracing study does.
            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


            • #21
              Originally posted by Ballet Mom View Post
              I didn't presume that it would be the pediatric surgeons that would be seeing the patients. But I would certainly think that if the adult surgeons felt most curves were progressing if the patient had been braced, they'd be letting the pediatric surgeons know about it. And what portion of that is due to lumbar degeneration due to an aging spine that would probably occur if they had been fused anyway or even due to the fusion itself?
              If the pediatric surgeons are listening, they've been presented with plenty of evidence.

              I agree that some (maybe even most) of the progression may be due to degeneration. So, let's just fuse everyone to the sacrum at 12, and be done with it. ;-)

              You and Sharon both need to understand that the truth is somewhere in the middle, and that you're both probably pretty far from reality. No treatment is right for everyone. So, if everyone just stops making claims that are incorrect, we'll have a lot less heated argument.
              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


              • #22
                Originally posted by LindaRacine View Post
                If the pediatric surgeons are listening, they've been presented with plenty of evidence.

                I agree that some (maybe even most) of the progression may be due to degeneration. So, let's just fuse everyone to the sacrum at 12, and be done with it. ;-)

                You and Sharon both need to understand that the truth is somewhere in the middle, and that you're both probably pretty far from reality. No treatment is right for everyone. So, if everyone just stops making claims that are incorrect, we'll have a lot less heated argument.
                I have never suggested that bracing is right for everyone. And I would suggest to you that we'd have a lot less heated argument if I was not the only one that was ever reprimanded. Good night.

                Comment


                • #23
                  Originally posted by LindaRacine View Post

                  You and Sharon both need to understand that the truth is somewhere in the middle, and that you're both probably pretty far from reality. No treatment is right for everyone. So, if everyone just stops making claims that are incorrect, we'll have a lot less heated argument.
                  I'm on the side of science and the surgeons and therefore reality. When something is not known I acknowledge it. I am not aware that I made any claims that surgeons or researchers have not shown. Brace treatment is hard and there is no room for being cavalier about it as we have seen. There are ethical considerations even if it can be shown to work in the short term. Once you bring in the long term, the ethical considerations multiply, perhaps out of hand.

                  The other side is faith and wishful thinking.

                  Science is the only game in town.
                  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


                  • #24
                    A 50 year follow-up is ridiculous. Many of the 'braced' group would be dead by then, and as far as the adults having fusions most of them would be dead if they were over 40 years old. Ask any 90 y/o how they feel. I think longer follow-ups should be required for the brace group, but not 50 years for cryin' out loud. I would think 10 to 20 year follow-up would be sufficient for the surgery group, depending on how old they were at the time of surgery. We all age. We scoli people may age harder on our spines, but as was mentioned, most aging adults have back pain from one thing or another. This can't be attributed to lack of success of either option. It should always be noted that if someone was braced and went on to have fusion due to scoliosis later on that bracing was not a success. These should be kept track of. The fact that the patients outlive the doctors should have no bearing on the subject. Medical records for this condition should be kept FOREVER for everyone. Sadly they are not. My initial records and x-rays were destroyed after 7 years. I think the practitioners should wake up and smell the coffee on this one. They should be required to submit this information into a central database. Unfortunately, medical privacy laws will likely prevent this from ever happening.

                    As far as the newer techniques of VBS and whatever else is out there being developed that is less invasive than fusion, I think that would be the more humane route to go vs. bracing. One surgery vs. years of bruising and pressure sores, not to mention the bulkiness of the brace and the effect on self-image. But again these procedures need years of follow-up, too, to make sure that an all out fusion isn't needed later on.

                    That's my take on the whole thing.

                    As far as spines progressing only when they reach 50* as an adult, that's a bunch of hockey. I have one curve that was like 18-20* at 18 years old. It is now 38* and considered a major curve, when before it was only a compensatory curve. I'm sure that there are many more like me out there.
                    Last edited by rohrer01; 11-03-2011, 02:25 PM. Reason: I can't spell
                    Be happy!
                    We don't know what tomorrow brings,
                    but we are alive today!

                    Comment


                    • #25
                      Originally posted by rohrer01 View Post
                      It should always be noted that if someone was braced and went on to have fusion due to scoliosis later on that bracing was not a success. These should be kept track of.
                      That would seem to be an important study. Adult scoli surgeons could collect these data easily it would seem. It would be impossible to sort out the people who were braced needlessly versus those where the brace only delayed fusion but it's a start. The compliance issue will be a complication to interpreting who was needlessly braced (the likely majority) and who had their fusion delayed by bracing. That's because non-compliant brace wear with a curve that didn't need to be braced looks exactly like compliant brace wear on a curve that was temporary held under surgical range by bracing when looking back like this.

                      As far as the newer techniques of VBS and whatever else is out there being developed that is less invasive than fusion, I think that would be the more humane route to go vs. bracing. One surgery vs. years of bruising and pressure sores, not to mention the bulkiness of the brace and the effect on self-image. But again these procedures need years of follow-up, too, to make sure that an all out fusion isn't needed later on.
                      That's a good point but many kids will not qualify for VBA for various reasons or their parents will not consider it. These are the kids who are stuck between a rock and a hard place.

                      As far as spines progressing only when they reach 50* as an adult, that's a bunch of hockey. I have one curve that was like 18-20* at 18 years old. It is now 38* and considered a major curve, when before it was only a compensatory curve. I'm sure that there are many more like me out there.
                      Yes a bunch of hockey. This is an example of ignoring facts and sticking with wishful thinking. It is acknowledged that 30* is generally protective of progression to surgical range over a lifetime. Some smaller curves have progressed as yours has and at least one other person on the group. Given that many if not most "successfully" braced patients will end up at >30*, this alone and all by itself calls bracing into question as a permanent way to avoid surgery versus only as a delay of surgery.

                      And I agree with you that is appears to be some conversion of formerly compensatory curves to structural ones. Thoracic curves account for the majority of curves AND for the majority of progressive curves. That combination should result in the bulk of adult surgeries being for thoracic curves. But based on the testimonials here, we don't see that at all. We see longer fusions to involve the lumbar. The conversion of T curves to double majors needs to be quantified and parents need this information. Dr. Hey bangs on quite a bit about how fusions could be shorter and not involving the lumbar if done earlier. He has several posts on this issue.
                      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


                      • #26
                        Dr. Hey is very choosy about who he sees. I had scheduled a consult with him at his urging and he cancelled it. He didn't give me a really legitimate "reason". He did, however, go over my x-rays with me and gave me a LOT of information. The docs around here aren't as progressive in their thinking as he is. He gave me the impression that since my curve was progressing that it should be fused even though it was under 50*.

                        Although, I can honestly say, that if they could have made a brace to help my curve, which they couldn't because of its location, I would have been one of the kids to jump at the chance to wear it in hopes of it helping, simply for pain "reduction" if nothing else. I might have been in for a big shock, though, when the reality of the discomfort set in. Who knows if I would have been compliant or not. I'm just not in to pain.

                        I really feel sorry for the kids who fall through the cracks. I chose to do nothing with my kids and my daughter has back pain, but her scoli doesn't look bad. I have no idea how bad her scoli is, since I listened to that stupid sports ortho and didn't follow up,...ever. I just looked at my 19 year old son't back the other day while cutting his hair. His spina bifida looks like it covers a span of about 3 or 4 vertebrae in the lower T-spine and his slight curve has returned. I don't know if it would appear that way on x-ray or not. It may just be some assymetry. But it looks to me like a TL curve. Either way my kids wouldn't have benefited from bracing because they aren't that bad now and are both grown. My son is an exercise freak and very muscular, although he thinks he's scrawny, but I have always thought that exercise is good for everyone with back problems.
                        Be happy!
                        We don't know what tomorrow brings,
                        but we are alive today!

                        Comment


                        • #27
                          Originally posted by rohrer01 View Post
                          A 50 year follow-up is rediculous. Many of the 'braced' group would be dead by then, and as far as the adults having fusions most of them would be dead if they were over 40 years old. Ask any 90 y/o how they feel. I think longer follow-ups should be required for the brace group, but not 50 years for cryin' out loud. I would think 10 to 20 year follow-up would be sufficient for the surgery group, depending on how old they were at the time of surgery.
                          A 50 year follow-up for bracing doesn't seem outrageous to me. At worst, the patients would be 68 years old at follow-up. I agree that a 20 year follow-up is appropriate for patients fused as adults, but kids fused at 12-18 should have at least 40 years of follow-up. In my own little group of people I know who had fusions around the same time as I did, most of them have started to have degenerative issues, many resulting in additional surgery, in the past few years. (We're all about 18-22 years postop.) We see people all the time, who had surgery when they were in their teens, and are now in their 30's, 40's, 50's and 60's, and are just beginning to have trouble.

                          No matter what the early treatment is, a good percentage of patients are going to go on to requiring additional treatment later in life. so, to me, the bottom line is that we need to know the real story for all of these patients, so that patients can start making informed decisions based on not just what is happening now, but what will happen 20, 30, 40, or 50 years from now. For some people, putting off surgery for 40 years may be perfectly acceptable, while for others, it could be totally unacceptable. --Linda
                          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


                          • #28
                            Yeah, for some reason I was thinking they would be 78 and not 68 and comparing that to the "average" life expectancy. I recant that statement.
                            I realize that there are MANY people that live beyond 78, but many do not. With that taking into consideration the fact that most elderly people suffer from arthritic changes. You can't blame everything on scoli, although our spines do have a much harder wear and tear than most.
                            Be happy!
                            We don't know what tomorrow brings,
                            but we are alive today!

                            Comment


                            • #29
                              Originally posted by hdugger
                              For some reason, bracing is considered to have "failed" if the patient ever requires surgery, while, for people needing revision surgery it's somehow deemed "successful" because it gave them 10 or 20 good years. Either needing surgery later in life is a failure for both, or putting it off for 10 or 20 years is a success for both. We can't make an adequate comparison unless success and failure are defined in the same way for both.
                              Bracing of kids is done to avoid surgery FULL STOP. Defining "failure" in that context is beyond obvious. There is no fuzzy area here.

                              There is no sane person who would brace if the hope wasn't to avoid surgery. Nobody. You can't even get some kids to comply even when they have been convinced (i.e., lied to) that not wearing the brace will result in surgery.

                              Success of bracing and success of surgery are apples and oranges because one is to avoid the other.
                              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


                              • #30
                                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.
                                These results of this bracing study are wrong is my guess. I have pointed out a few limitations without even referencing the lack of agreement with Scoliscore. Referencing the lack of agreement with Scoliscore really raises the bar.

                                Let's see if this study makes it through peer review into publication. It may 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

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