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Why I decided to brace my daughter with the SpineCor

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  • #31
    Originally posted by concerned dad View Post
    They have a an xray of a patient there with text "weaning time:62 months"
    I suspect it's a typo. It was probably 6.2 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


    • #32
      Originally posted by concerned dad View Post
      We are probably boring the heck out of people.
      No way! This is fantastic stuff!! Please keep it up!!!

      (Just because we're not posting, it doesn't mean we're not reading avidly )
      UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
      10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
      Surgery due to take place early December 2011 at the RNOH, England.

      Comment


      • #33
        Weaning/JIS patients

        This probably is best addressed to Christine2, who has a young daughter in Spinecor, or anyone with familiarity with Spinecor and JIS patients. Do you anticipate that she will have to remain full-time in the Spinecor brace until skeletal maturity despite her correction (I'm not sure if that is in-brace or out of brace--it's my recollection that Spinecor does not emphasize out of brace xrays until later in the bracing process)? Are there more criteria for initiating the weaning process than maturity?

        Thanks, mamandcrm
        mamandcrm

        G diagnosed 6/08 at almost 7 with 25*
        Providence night brace, increased to 35*
        Rigo-Cheneau brace full-time 12/08-4/10
        14* at 10/09 OOB x-ray
        11* at 4/10 OOB x-ray
        Wearing R-C part-time since 4/10
        latest OOB xray 5/14 13*
        currently going on 13 yrs old

        I no longer participate in this forum though I will update signature from time to time with status

        Comment


        • #34
          By the way, interesting discussion. Thanks for the detailed look at the research.
          mamandcrm

          G diagnosed 6/08 at almost 7 with 25*
          Providence night brace, increased to 35*
          Rigo-Cheneau brace full-time 12/08-4/10
          14* at 10/09 OOB x-ray
          11* at 4/10 OOB x-ray
          Wearing R-C part-time since 4/10
          latest OOB xray 5/14 13*
          currently going on 13 yrs old

          I no longer participate in this forum though I will update signature from time to time with status

          Comment


          • #35
            Important caveat

            I think it needs constant emphasizing that nobody in this discussion has as their field bracing research. Nobody is an orthopedic surgeon.

            While it might look like we are doing detailed analyses of the papers, I strongly suspect I, at least, am missing a boatload of important information. My critiques can only go so far and, by definition, just can address the scientific method as opposed to this field in particular.
            Last edited by Pooka1; 01-11-2009, 08:58 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


            • #36
              Originally posted by concerned dad View Post
              OK, it looks like the weaning period takes 6 months.
              At the weaning evaluation visit, the patient is xrayed (after not wearing the brace for 72 hours).
              Then, the brace is put on and another in brace xray is taken
              if the two differ by less than 5 degrees, weaning commences

              Weaning consists of wearing the brace 10 hours a day for 6 months, then
              show up for appt after NOT wearing the brace for 3 days (72 hours).
              Take out of brace xray

              Then take in brace xray

              If difference is less than 5 degrees, complete discontinuation of brace.
              24 month weaning

              Someone correct me if I'm wrong but this seems to be a case where the weaning period was identical to the "magic" 2-year period post-bracing.

              In other words, they are technically following the criteria to present data from 2-years post "bracing" but the patient wore the brace about half the day, every day for the entire 2-year period!

              Are we on Candid Camera???
              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


              • #37
                Originally posted by Pooka1 View Post
                I think it needs constant emphasizing that nobody in this discussion has as their field bracing research. Nobody is an orthopedic surgeon.

                While it might look like we are doing details analyses of the papers, I strongly suspect I, at least, am missing a boatload of important information. My critiques can only go so far and, by definition, just can address the scientific method as opposed to this field in particular.
                I KNOW I'm missing a lot.

                The more I look at this stuff, the more I realize how little I know.

                Good reminder Sharon

                As an example, although I'm too tired now to go into it in detail, I see what the problem with the Nachemson paper is. It has to do with how they grouped curve types between the control group and the braced group.

                From a 1999 paper by Dickson in Spine discussing Nachemson.....

                One hundred and eleven braced patients were compared to 129 observed and 46 electrically stimulated. The failure rate was an increase in Cobb angle by 6°. On this basis 36% of the braced, 52% of the observed, and 63% of the stimulated failed and these differences achieved statistical significance. The next paper in the same journal looked at factors that affect natural history
                and one of the most compelling features was that thoracic curves had a much worse prognosis than thoracolumbar curves. Looking now at the proportions of the more progressive thoracic curves in the three trial groups, 89% were thoracic in the stimulated group, 81% in the observed group, and a mere 68% in the braced group. Meanwhile, in the paper originating in Puerto
                Rico, 70% of the untreated group had thoracic curves and 46% of the treated group. It would be difficult to stack the odds better.



                maybe i should further tone down my criticism of Dolan in my post above.

                Comment


                • #38
                  Good analysis, Concerned Dad.

                  There are other issues in that paper besides the one you mentioned.

                  This issue of stacking patients in one or the other group, whether it is conscious or not, makes the case for individual-based modeling in my opinion.

                  If they had simply shown distribution profiles in the original paper, it would never have been published in my opinon. Why the reviewers didn't ask for them, I don't know.

                  I continue to question the peer-review and editing in these journals.
                  Last edited by Pooka1; 01-12-2009, 07:31 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


                  • #39
                    Originally posted by Pooka1 View Post
                    24 month weaning

                    Someone correct me if I'm wrong but this seems to be a case where the weaning period was identical to the "magic" 2-year period post-bracing.

                    In other words, they are technically following the criteria to present data from 2-years post "bracing" but the patient wore the brace about half the day, every day for the entire 2-year period!

                    Are we on Candid Camera???
                    I suspect that Drs. Rivard and Colliard have little control over weaning time. It seems like I'm constantly hearing from parents who tell me they've been told to wean their kids off the brace. But either the parents, or even the kids themselves, keep the brace on despite the contrary instruction.

                    --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


                    • #40
                      Something squirrelly about the weaning

                      Based on the criteria posted about indication for weaning, I am guessing the majority of patients are simply slowing the curvature relapse during the weaning period and only stop when they hit their original (or higher) Cobb angle. Spinecor is new enough such that they can squeeze a few more papers out in the mean time which will later be (or should be) retracted.

                      I want to see the percentages of patients who:

                      1. needed at least one weaning period (of 6 months)
                      2. of those, the percentage who needed two weaning periods
                      3. of those, the percentage who needed three or more weaning periods.
                      4. The percentage of patients who came back to the same angle (+/- 5*) they started with before bracing two years after the brace comes off for good.

                      I don't think there is any clear evidence Spincor has improved a single curve long term at this point. They may have helped hold curves but we can't really know that without controls.

                      And just to be clear we also don't know that Spinecor is NOT working as advertised. Until these authors crunch the data in a reasonable fashion, we can't know either way. It's not enough to execute a bracing study. You have to have a good design and know how to present the data if want to make a case.
                      Last edited by Pooka1; 01-23-2009, 12:46 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


                      • #41
                        Originally posted by LindaRacine View Post
                        I suspect that Drs. Rivard and Colliard have little control over weaning time. It seems like I'm constantly hearing from parents who tell me they've been told to wean their kids off the brace. But either the parents, or even the kids themselves, keep the brace on despite the contrary instruction.
                        An obvious explanation for your anecdotal observation is these kids are failing the trial weaning and don't want to see any further deterioration so they just continue wearing the brace (for life?).

                        There is something vague about the Spinecor papers on this weaning business. I can't tell if it is deliberate or not. It is outrageous that the paper we were discussing did not rigorously define all these terms (e.g., "stable," "weaning point," etc.).

                        They need to pony up the data on how many patients fail the first weaning test and how many relapse completely to the original curve (or worse) two years after the brace is removed for good. Forget publishing all the weaning crap.
                        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


                        • #42
                          Originally posted by LindaRacine View Post
                          I suspect it's a typo. It was probably 6.2 months.
                          Based on the dates, 62 month (over five years) is correct.
                          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


                          • #43
                            I don’t have much time right now but I just wanted to follow up with some thoughts.
                            I slept poorly last night. This revelation from the Dickson paper hit me like a ton of bricks.
                            What does it mean? Besides the fact that <gulp> I was wrong and Sharon was right (with regard to the big picture of what we KNOW about brace efficacy), it means that we really do not KNOW that bracing has a positive affect.
                            Of course, we don’t KNOW the opposite either. It may indeed have a positive affect. (And no one should be discouraged or cease their current therapy.)

                            Now, perhaps I should have realized this sooner because Sharon pointed it out. I don’t, (and neither should anyone) believe everything (or anything) I read on forums like these. But the discussions are useful to steer one in the right directions to gain personal understanding.

                            For me, the revelation enforces my decision to go with the SpineCor. I’m not sure if that makes sense to everyone but I can get into that later.

                            I disagree with Sharon about the integrity of the researchers (maybe that’s not the right word but the whole “questioning the peer review process” stuff). This Nachemson data (which is “The SRS Bracing Study) was published in the SAME issue as the data indicating that different TYPES of curves have different progression characteristics. These guys did not know this before the study came out. Wow, 10 years wasted. I hope someone has looked into salvaging info from the Nachemson study, but I have not seen that discussed yet in my search.

                            I now understand why the new BrAIST study can and should proceed. Apologies for my criticism of Dolan (and I will edit my post above).

                            This is a good example of how science works. Consensus means very little (if anything). I imagine that, if the results of the NEW bracing study reveal bracing to be ineffective it will have consequences to the ortho field similar to what the 1960’s discovery of Plate Tectonics had to the field of geology. It may upset the whole apple cart. Similarly, the field of Climate Science, while boasting of a consensus, needs to ensure that their results are scientific and defensible.

                            But I digress,
                            Regarding weaning, Linda – no, I don’t think the 62 months is a typo. Neither do I think it is nefarious Sharon. I expect that it is a language issue. I agree Sharon that the journal reviewers should have caught this and pressed for a definition. Text from the new Coillard paper (2008) says (also in the 2007 Coillard paper): (emphasis added is mine)

                            “As reported by Montomery and collaborators, a follow up of 2 years is sufficient to foresee progression after weaning from the brace.”

                            So they clearly understand the issue. What needs to be clarified is if their two year data is indeed “after weaning” or if it includes patients who are still being weaned. I suspect that it does not include patients still being weaned (braced part time), but I can’t say for sure based on what I’ve read.



                            Originally posted by Pooka1 View Post
                            I want to see the percentages of patients who:

                            1. needed one weaning period (of 6 months)
                            2. of those, the percentage who needed two weaning periods
                            3. of those, the percentage who needed three or more weaning periods.
                            4. The percentage of patients who came back to the same angle (+/- 5*) they started with before bracing two years after the brace comes off for good.
                            For me, it is too early to jump to conclusions based on the “weaning issue”. But I agree that I would like to see the 4 numbers Sharon asked for above. Most importantly for me, the last one. And this is driven home more by a figure in the linked presentation showing “Weaning Time: 62 months”.

                            Comment


                            • #44
                              Originally posted by concerned dad View Post
                              I don’t have much time right now but I just wanted to follow up with some thoughts.
                              I slept poorly last night. This revelation from the Dickson paper hit me like a ton of bricks.
                              I'm sorry to hear that.

                              What does it mean? Besides the fact that <gulp> I was wrong and Sharon was right (with regard to the big picture of what we KNOW about brace efficacy), it means that we really do not KNOW that bracing has a positive affect.
                              I see us as being on the same side. This is about mutually trying to come to some better understanding through a dialectic in this case.

                              Of course, we don’t KNOW the opposite either. It may indeed have a positive affect. (And no one should be discouraged or cease their current therapy.)
                              Right. I have seen nothing that rules out that bracing works. It might work. But the people who know this should show it.

                              (snip)

                              I disagree with Sharon about the integrity of the researchers (maybe that’s not the right word but the whole “questioning the peer review process” stuff). This Nachemson data (which is “The SRS Bracing Study) was published in the SAME issue as the data indicating that different TYPES of curves have different progression characteristics. These guys did not know this before the study came out. Wow, 10 years wasted. I hope someone has looked into salvaging info from the Nachemson study, but I have not seen that discussed yet in my search.
                              Well I'm just saying it's not clear what the Spinecor or other researchers are or are not trying to do with the data. W.R.T. peer review, defining all terms is reviewing 101. I realize there necessarily is some jargon in all scientific articles but when you are breaking new ground like in the case of weaning, and especially in the first instance of usage in the published literature, you define the terms. And certainly is you claim to be following some other set of criteria like the SRS one, you have to be extra clear when you have something called "weaning" that isn't addressed in the criteria.

                              (snip)

                              This is a good example of how science works. Consensus means very little (if anything). I imagine that, if the results of the NEW bracing study reveal bracing to be ineffective it will have consequences to the ortho field similar to what the 1960’s discovery of Plate Tectonics had to the field of geology. It may upset the whole apple cart. Similarly, the field of Climate Science, while boasting of a consensus, needs to ensure that their results are scientific and defensible.
                              Agree. And plate tectonics was nail number five bazillion in the coffin of young earth creationism, BTW.

                              But I digress,
                              Regarding weaning, Linda – no, I don’t think the 62 months is a typo. Neither do I think it is nefarious Sharon. I expect that it is a language issue. I agree Sharon that the journal reviewers should have caught this and pressed for a definition. Text from the new Coillard paper (2008) says (also in the 2007 Coillard paper): (emphasis added is mine)
                              Those data have not been published as far as I know. They are still at the stage of being a Powerpoint presentation. I can tell you from personal experience that what I have presented at scientific meetings and what ends up in the journal can be very different. The presentation is not peer-reviewed. The journal articles hopefully are. Don't bank on ANYTHING that is still at the Powerpoint point.

                              “As reported by Montomery and collaborators, a follow up of 2 years is sufficient to foresee progression after weaning from the brace.”

                              So they clearly understand the issue. What needs to be clarified is if their two year data is indeed “after weaning” or if it includes patients who are still being weaned. I suspect that it does not include patients still being weaned (braced part time), but I can’t say for sure based on what I’ve read.
                              I suspect you are right because the alternative is hard to imagine given how these data have been presented. That is, most people would form an opinion of the integrity of the Spinecor folks if it turns out that patients were braced at any point in the 2-yr post-bracing period. If that turned out to be the case without them CLEARLY saying that was the case, I can tell you I will not waste my time reading further papers from these authors.

                              For me, it is too early to jump to conclusions based on the “weaning issue”. But I agree that I would like to see the 4 numbers Sharon asked for above. Most importantly for me, the last one. And this is driven home more by a figure in the linked presentation showing “Weaning Time: 62 months”.
                              I'd also like to know what the Cobb angle was on that patient at the beginning of brace treatment. Details, details.
                              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


                              • #45
                                Originally posted by Pooka1 View Post
                                I see us as being on the same side. This is about mutually trying to come to some better understanding through a dialectic in this case.
                                I meant it in the sense of how we are exploring these issues. We are loosely using the Socratic method where two or more people assist one another in finding the answers to difficult questions by questioning and taking opposing viewpoints.

                                When is it going to be my turn to play Socrates

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