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  • #91
    Originally posted by Ballet Mom View Post
    So basically, all the orthopedic surgeons who have seen my daughter, and all the orthopedic surgeons who are seeing other pediatric patients, and all the medical textbooks are all wrong and lying and Pooka in her ultimate wisdom knows better than anyone out there. They're all lying because they're hateful people who know that my daughter will probably need surgery when she's old and decrepit with co-morbidities and bad bones and probably won't be able to afford it because she'll probably be poor and without insurance. And that gives them great pleasure. It's no doubt a big conspiracy to hide the truth because they are trying to save insurance companies money by not paying for surgery now. No doubt there are kickbacks involved.

    It's to laugh.
    I understand your frustration, I really do. From my perspective, they just don't know. I feel like I fell through the cracks and am paying for it now. Pooka has her own take on things as you do. As a parent that is bracing, I know that you are doing all that you possibly can for your daughter because you and your doctor think it is best for HER. There's nothing wrong with that. I can also understand Pooka's frustration of bracing her daughter and ending up in the OR anyway.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

    Comment


    • #92
      Originally posted by rohrer01 View Post
      I can also understand Pooka's frustration of bracing her daughter and ending up in the OR anyway.
      Pooka's daughter wanted to brace, not Pooka. I'm sure that must have been frustrating for her.

      Comment


      • #93
        I think a big question here should be how good the brace is and what type of correction is obtained in the brace. The idea of heat sensors in braces is a good one, except if a child is going to be non-compliant they will find a way to put a heating pad in the brace to make it "look" like they were wearing it, so it is still hard to measure compliance. When I looked back at that video, the thing that really jumped out at me was how the brace was made and the success rate. However, with that said, the x-rays that they showed as their example clearly looked to me that this child was progressing again at 3 months out of brace. Three months just isn't enough time. I'm wondering if progression doesn't occur because of muscle weakening from wearing the brace.

        I do agree that there is a better chance of success if the child is actively growing. For example, my daughter had tooth crowding as soon as her adult teeth were coming in. They were coming in sideways. When I took her to the orthodontist who specialized in pediatrics, he recommended an appliance that would gradually reshape her upper and lower jaws. It was a horrible treatment and her mouth was sore and bleeding a lot of the time. I had to adjust (tighten) the appliance every other day or every third day (I can't remember). But low and behold, her growing mouth did indeed conform to the shape of her appliance. The orthodontist explained that phase two of her treatment was braces. It worked so well that her teeth were straightened out enough that she didn't need braces. If I had not used the appliance, the orthodontist would have had to pull several healthy teeth to straighten the remaining ones with braces since her mouth was so small. So, in theory, if you can change the shape of a growing jaw, why couldn't you change the shape of a growing spine given that the orthotics are fit properly? Although, I realize that the spine is much more complex than a jaw. There could be so many other factors that are metabolic pathways to the way the spine grows, in which case that disorder would be lifelong. It would be nice to figure that one out, but unfortunately they haven't.
        Be happy!
        We don't know what tomorrow brings,
        but we are alive today!

        Comment


        • #94
          Originally posted by Ballet Mom View Post
          It is ONLY Pooka who claims that braced people all need surgery later on in life.
          FALSE

          If you are going to lie then I agree with Linda you should go back to lurking. Otherwise I hope you stay.
          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


          • #95
            Originally posted by rohrer01 View Post
            I don't think that is what she is claiming. It is my understanding that she believes the evidence in the papers that she has read to support the idea of bracing being inevitably the same as the watch and wait group later on down the line. More studies need to be done to prove this hypothesis, and I think she mentioned one that was being done. Her argument was that the doctors didn't find it unethical NOT to brace kids that would have normally been braced in order to conduct this study. Her claim, if I understand it clearly, is that if they (the doctors) didn't find it unethical to withhold bracing, then they (the doctors) don't really think bracing has any long term efficacy. I don't think anyone can claim that all braced kids go on to need surgery, but then again neither do all of the watch and waits. Pooka can correct me if I'm wrong. But that's what I understand her posts to mean, even though she may come across as rather harsh.
            That right but I would add that the surgeons are explicitly doubting the short term efficacy in addition to the long term. The study is only designed to study the short-term (angle at maturity). But because virtually all kids who were braced will be above 30* at maturity, they are above the threshhold that appears to be protective against progression to surgical range in adulthood. But if many/most of the kids in the low/mid 30* do onot progress to surgery then we need to know that. That will change the ethics of bracing for the long term.
            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


            • #96
              Originally posted by Ballet Mom View Post
              So basically, all the orthopedic surgeons who have seen my daughter, and all the orthopedic surgeons who are seeing other pediatric patients, and all the medical textbooks are all wrong and lying and Pooka in her ultimate wisdom knows better than anyone out there. They're all lying because they're hateful people who know that my daughter will probably need surgery when she's old and decrepit with co-morbidities and bad bones and probably won't be able to afford it because she'll probably be poor and without insurance. And that gives them great pleasure. It's no doubt a big conspiracy to hide the truth because they are trying to save insurance companies money by not paying for surgery now. No doubt there are kickbacks involved.

              It's to laugh.
              This is your more irrational conspiratorial side coming through. Please suppress it to preserve any credibility you have left.
              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


              • #97
                Originally posted by Ballet Mom View Post
                Pooka's daughter wanted to brace, not Pooka. I'm sure that must have been frustrating for her.
                FALSE.

                When we got the brace I was unaware of the evidence case for bracing so I was on board and my daughter was on board. As I got into the train wreck of the bracing literature, I realized this was unproven. My daughter wanted to continue trying it because it was only at night and she had gotten used to the brace. She would not have worn a 23 hour/day brace at all according to her and I'm glad we weren't offered one when I was unacquainted with the literature. I feel like she and I dodged a bullet there.

                The parents of kids wearing a night-time brace (you and me among them) are not in a position to pontificate about the ease of wearing a 23 hour/day brace because the night-time brace does not simply extrapolate to 23 hours/day... there are entirely new and different problems wearing a brace that long and during the day. But I can read the first-hand testimonials and it's heartbreaking, especially given the evidence case.

                I do not fault parents who agree to 23 hour/day bracing because it hasn't been shown not to work. There is still some glimmer of hope but it is likely not going to be used in the widespread, shotgun fashion it is now if/when they narrow the field to the potentially few who can benefit and stay under 30*.
                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


                • #98
                  Originally posted by rohrer01 View Post
                  I think a big question here should be how good the brace is and what type of correction is obtained in the brace. The idea of heat sensors in braces is a good one, except if a child is going to be non-compliant they will find a way to put a heating pad in the brace to make it "look" like they were wearing it, so it is still hard to measure compliance. When I looked back at that video, the thing that really jumped out at me was how the brace was made and the success rate. However, with that said, the x-rays that they showed as their example clearly looked to me that this child was progressing again at 3 months out of brace. Three months just isn't enough time. I'm wondering if progression doesn't occur because of muscle weakening from wearing the brace.
                  I agree compliance is a huge wildcard in the bracing literature. It might be more effective given better compliance. Also getting at least 50% correction is claimed to be important but I suspect getting that outside a night-time bending brace situation can only make the brace more uncomfortable, triggering more compliance issues. Who can blame a kid for not wanting to wear an uncomfortably tight brace 23 hours/day for years in light of the evidence case to date? No jury would convict them. Parents at their wits end of non-compliance can take heart that there is not really any reason to despair over any missed opportunity as far as anyone knows now.

                  I do agree that there is a better chance of success if the child is actively growing.
                  That's what they aim for and is the only window during which bracing can hope to work. Even if they can show that bracing during peak height growth is effective, identifying that time period might be a challenge. If it can be done, though, then the brace can be worn for less total time with the same effect.

                  That amazing how the appliance was so good it avoided the need for bracing with your daughter! Those surgeons are 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


                  • #99
                    Just a side point here, but I'm wondering if perhaps girls tend to be more compliant than boys about bracing. When my son was first diagnosed at around 12.5 years of age by our family doctor, he told us there were really only two ways to go: 23/hr bracing or surgery. My son said right there and then there was absolutely no way, no how was he going to wear a brace for a minute let alone 23/hr a day. That said, he was past the point of bracing anyway so it was irrelevant.
                    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
                    Halo Traction & 1st. surgery on March 22nd. 2011
                    Spinal Fusion on April 19th. 2011

                    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



                    http://tinyurl.com/Elias-Before
                    http://tinyurl.com/Elias-After

                    Comment


                    • Originally posted by Pooka1 View Post
                      Correct me if I'm wrong but I think you are agreeing that these entire study designs are indeed fashioned around "surgery avoidance" as the goal of bracing and therefore assess how much risk of surgery is tolerated in exchange for wearing a brace, yes? But that you are taking issue with fashioning studies around that question, yes? Also, suggest it is not a random population but a "primed" population on some idea, yes?
                      Yes. But not just fashioning studies that way, since these were done to improve treatment and/or study recruitment. My issue is with how management options are presented to AIS patients and families in general. As I've learned on this board, progression and complication for adults is a very real thing that isn't considered all that much. It might be mentioned or lightly discussed during active treatment, but most studies (practices?) look at the end of the growth spurt as the finish line. I'm saying/suggesting that clinical practice and research need to change the dogma to include the very real chance that a curve >30° at 18 may still progress and while a rapid progression is not likely a chronic progression needs to be monitored.

                      Originally posted by Pooka1 View Post
                      I definitely agree there is "priming" associated with bracing and surgery in the minds of kids. That will matter in these studies. I don't necessarily think they or any psych-based studies are particularly tight because of these issues that can easily influence the results. It's almost like the final number is mostly a measure of the confounding variables. I also think the answers about acceptable risk change dramatically as they actually try to wear the brace. Or maybe I don't understand what is going one.
                      No, you're correct. And the studies discuss these issues but ultimately are just trying to get any type of clue when it comes to understanding management option decisions. The risk assessment changes as the time in brace (years) changes, i.e. positively correlated. And I agree with that finding as well. The longer someone needs to wear a brace, the better that brace had better perform.


                      Originally posted by Pooka1 View Post
                      There is not a single person who is ever told as you claim that bracing is done to prevent progression ONLY during childhood and that it has no bearing on progression in adults. If you told kids that you would have zero or near-zero compliance from any kid with a brain. As it should be.
                      Unless bracing only works during that phase of growth. As well, if presented like this "wearing a brace/(insert other conservative treatment here) reduces/controlls the size of curve by the end of growth which is beneficial because management during adulthood will be much easier with potentially less risk for chronic progression etc...." then you've set up the understanding that managing this is/may be a lifetime thing. Thus, let's control progression (and through extrapolation, surgery) now and we'll continue to work to avoid surgery for life.

                      And I feel I should say/remind, that the rotational strength study was started to give an alternative to bracing. I spent a bit of time developing arguments against bracing and watched many eligible patients get referred to bracing instead of enrolled in our study. I agree fully that bracing is hard and is further complicated by its seemingly variable results. I am mostly arguing against the "for life or it didn't work" part of this little debate and taking the stance that AIS management is not a "one and done" type of disease. It might take more than 1 form of treatment to be controlled and it may never be controlled. It's actually why we used the term "management" instead of "treatment" in our studies. We weren't treating we were only managing. This difference gives the indication that its long term. And this change needs to infiltrate research and practice.

                      Originally posted by Ballet Mom View Post
                      I think this is a statement of the obvious that didn't need any funding for anyone to arrive at this conclusion.
                      This was only one small point noted in the larger study and was meant to try and explain why so few people chose bracing.

                      Originally posted by Ballet Mom View Post
                      I suspect she would have been compliant with full day bracing had that one orthopedist not immediately said to her: "Oh, you wouldn't want to wear a brace all day, would you?" That was the immediate end of that possibility as he is the person in authority. Support by the surgeon is a necessary requirement if any bracing program is going to be successful.
                      This was one of the main points of the study, was that surgeon involvement and support is crucial for any clinical trial to be successful.

                      Comment


                      • Originally posted by Kevin_Mc View Post
                        Yes. But not just fashioning studies that way, since these were done to improve treatment and/or study recruitment. My issue is with how management options are presented to AIS patients and families in general. As I've learned on this board, progression and complication for adults is a very real thing that isn't considered all that much. It might be mentioned or lightly discussed during active treatment, but most studies (practices?) look at the end of the growth spurt as the finish line. I'm saying/suggesting that clinical practice and research need to change the dogma to include the very real chance that a curve >30° at 18 may still progress and while a rapid progression is not likely a chronic progression needs to be monitored.
                        I completely agree with this. If my experience is at all typical, the point of bracing as presented to me was to reach maturity at a sub-surgical angle. Thus I was focused like a laser on being less than 50* at skeletal maturity. And I can't tell you if it was stated outright to not but I certainly had the impression that if we were subsurgical at maturity then surgery would be avoided for life. It is only when I delved into the literature and read the testimonials that I realized I developed a false notion of what the case was. Had I asked the correct questions, our surgeons would have apprised me of everything I know now. I didn't know to ask. I started asking pertinent questions later and noted that some of the interns were not familiar with the bracing literature but the surgeon was. I think it is a case of knowing the propensity to progress for curves >30* is a positive number but not having good evidence of what that positive number is. I think the surgeon could rationally conclude at this point it is likely a low number and that would justify not mentioning it. We need to know that number. I'm guessing it is low. If it is large then everyone in a brace who is over 30* needs to know that in order to make an informed decision of continued bracing. If that number was known and large and my kid was told to continue to where the brace in the 40* range then I would be mad as hell even for a night-time only brace. Had it been a 23 hour/day brace then it would raise very serious ethical issues.

                        Unless bracing only works during that phase of growth. As well, if presented like this "wearing a brace/(insert other conservative treatment here) reduces/controls the size of curve by the end of growth which is beneficial because management during adulthood will be much easier with potentially less risk for chronic progression etc...." then you've set up the understanding that managing this is/may be a lifetime thing. Thus, let's control progression (and through extrapolation, surgery) now and we'll continue to work to avoid surgery for life.
                        That's accurate in my opinion. But one you let the cat out of the bag like that one surgeon's comment about progression of a low thirties curve to surgical range in young adulthood as being "not unusual," I think brace compliance will plummet as it should. If bracing in any capacity only delays surgery then that is worse because adults have a harder time on average. Much harder. It triggers obvious ethical questions if bracing only delays fusion as appears to be the case in some instances.

                        And I feel I should say/remind, that the rotational strength study was started to give an alternative to bracing. I spent a bit of time developing arguments against bracing and watched many eligible patients get referred to bracing instead of enrolled in our study. I agree fully that bracing is hard and is further complicated by its seemingly variable results. I am mostly arguing against the "for life or it didn't work" part of this little debate and taking the stance that AIS management is not a "one and done" type of disease. It might take more than 1 form of treatment to be controlled and it may never be controlled. It's actually why we used the term "management" instead of "treatment" in our studies. We weren't treating we were only managing. This difference gives the indication that its long term. And this change needs to infiltrate research and practice.
                        Good points. It is obvious from so many testimonials how completely blindsided folks are to learn that they are surgical, even in young adulthood, after being subsurgical at maturity and being sent away with the thought they are out of the woods for life. That needs to change for everyone >30* and especially those folks with T and TL curves so they can potentially save levels in the lumbar.

                        This was one of the main points of the study, was that surgeon involvement and support is crucial for any clinical trial to be successful.
                        Honesty is required with these kids.
                        Last edited by Pooka1; 11-08-2011, 10:20 AM. Reason: apprised not appraised; additional sentence
                        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


                        • After going through all the posts I am disgusted by the negativity that some posters put up (and by claiming you are blunt is no excuse for parent bashing. Parents have to make choices for their children and guide them, children cannot make informed decisions.).

                          I have two children who were braced. Would you like to know a secret of positive bracing? A positive attitude. After discussing with the doctor the options for my 5 & 6 year old, I chose bracing for them to put off surgery as long as possible. Yes, I knew it wasn't a cure, but I also did not want my children to undergo surgery at such a young age and not reach their full growth potential.

                          When my kindergartener wore his brace for the first full day, it was his show and tell item. He let the other kids tap him, check it out, and went about his day. Most people never noticed it and although he was able not to wear it for a few years, he just had a check-up after 8 weeks post op. He's 6'1" and 14. if I had not made that choice for him and just watched, who knows if the curve would have progressed sooner, requiring surgery sooner, not allowing for his spine to lengthen as it has.

                          We always knew that my daughter would need surgery, but as I counted how many surgeries she would need with the growth rods, I was happy for her to be braced, requiring 9 verses over 14. She has happily traveled the world in her brace (in Europe it gets you right to the front of long lines), she works with disabled kids to ride horses, and she just had her last check-up a week ago, and she can now ride roller coasters.

                          I never let my kids feel sorry for themselves in the brace. I never let the brace keep them from activities they were allowed to do. We never made the brace a mystery. We embraced the brace and it worked for us. I just wish I was given the brace as an option before my surgery as a kid, instead of the other options given me.

                          Comment


                          • Originally posted by ecnw View Post
                            my 5 & 6 year old,
                            JIS and AIS seem to respond differently to bracing. JIS appears to respond much better to bracing, at least prior to the growth spurt. VBS, though, is becoming a more attractive option to bracing for many years it seems.

                            What I think everyone was discussing was AIS although I admit that wasn't clear. That's what I was discussing anyway. You have to know the players I guess to follow along.

                            None of that discussion can be applied to JIS without careful scrutiny and maybe not even then. Dr. Hey claims bracing works much of the time with JIS. I doubt any surgeon would say that about bracing and AIS because of the failures and because they can't sort out the folks who were needlessly braced.
                            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


                            • ECNW

                              Your children are very lucky that you had the foresight to try bracing and the positive attitude to make it work.

                              +1 for you!

                              With a little luck Scoliosis won't exist by the time you have grandchildren.
                              Last edited by Dingo; 11-10-2011, 12:54 PM.

                              Comment


                              • "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.
                                Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
                                Halo Traction & 1st. surgery on March 22nd. 2011
                                Spinal Fusion on April 19th. 2011

                                Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



                                http://tinyurl.com/Elias-Before
                                http://tinyurl.com/Elias-After

                                Comment

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