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Why I decided to brace my daughter with the SpineCor

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  • Originally posted by Dr. Dolan
    Patients and families don’t generally fear curve progression; they fear curve progression to the point where surgery is the only option to improve or maintain an acceptable level of cosmesis.
    Well if that's the concern then they should seek out very, very, very conservative surgeons who pull the trigger only at very, very, very high angles and forget the research on curve progression both before and after maturity.

    Primitives fear thunder because they think the gods are angry. This is not best addressed by showing them how to placate the gods. Rather this is best addressed by explaining the actual science behind thunder.

    I disagree that there is any problem with most folks understanding the connection between curve progression and curve progression to the point of surgery.
    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 concerned dad View Post
      Should the goal of intervention be escaping surgery or should the goal be stabilizing (or perhaps w/SpineCor, reducing) curve amplitude?
      The goal is to stabilize or reduce the curve to a point that will obviate surgery over the life of a patient in my opinion.

      We aren't there yet. We aren't even close.
      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


      • Look, it's fine to pick a criterion like having surgery. But you first have to make sure all the surgeons you are dealing with have the IDENTICAL protocols for that recommendation.

        We know FOR A FACT surgeons differ on this point.

        Therefore we know FOR A FACT this criterion introduces noise. A lot of noise. I think it's unpublishable.

        If scientists started tailoring their approaches to those that lay people think is important then we would have half the biology/geology journals publishing young earth creationist nonsense (pardon that redundancy).*

        * Most polls show about half the US population thinks the earth is a few thousand years old. We are the laughing stock of the world.
        Last edited by Pooka1; 02-20-2009, 12:32 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


        • Dr. Dolan makes the following statement in her concluding remarks of her Equipoise paper.

          It has been suggested that progression to surgery indicates the ultimate failure of bracing treatment. The key question of any future study of bracing, randomized or not, must be: How many patients avoided surgery because of bracing treatment?
          I guess I haven’t really given this surgery vs curve progression thing much thought. Are we bracing our kids to avoid surgery or are we bracing our kids to stabilize/reduce their curve? Is there a difference?

          The BrAIST study has as its primary outcome measure a Cobb angle of 50 degrees which they use as a proxy for surgery. So, correct me if I am wrong, but consider the following simplification. What if, when all is said and done, the braced kids have an average COBB angle of 30 degrees and the observed kids have an average COBB angle of 48 degrees. And equal numbers from both groups progress to surgery (or over 50 degrees). Would they then conclude that bracing is ineffective?

          Is the point of the BrAIST study that, while we indeed have enough scientific information to show bracing ALTERS the natural history of AIS. The question is, does it ALTER the need for surgery?

          My dad used to say you didn’t understand a contentious issue unless you could make good arguments from both perspectives. I think I may be heading back to the drawing board with my understanding of this whole thing.

          Sharon, you convinced me that we didn’t know if bracing alters the natural history of AIS. Part of that ‘convincing’ was seeing the BrAIST study was underway and me reading (and only partially understanding) the relevant papers. Now, looking back at the papers it seems that they are not arguing that bracing alters the natural history of AIS (in fact, they sort of concede that it does). They argue that bracing doesn’t necessarily reduce the need for surgery.

          Wow, I could use a cigarette now. (3 weeks this afternoon)

          and yes, that is a very freightening statistic you cite.

          Comment


          • I really like your thought processes in this last post. You are synthesizing and coming around to the bottom line in my opinion.
            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


            • Maybe the Spinecor thread does have something to worry about.

              It may just take me 250+ pages to figure this out.

              Comment


              • Originally posted by concerned dad View Post
                Maybe the Spinecor thread does have something to worry about.

                It may just take me 250+ pages to figure this out.

                Well you have clarified some things for me with your literature analyses. So maybe we just don't need 250+ pages to crack this nut.

                That's going to be my excuse if we don't achieve this all-important goal.
                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


                • For anyone following along, some of the issues (like weaning) discussed earlier in this thread are discussed in the research forum starting
                  here.

                  Comment


                  • so you think?

                    right now i am a boston brace wearer and it is correcting my spine but is not comfortbale and does not allow me to wear clothes that are 'COOL'. I want to go with the spinecor but I want to learn the perks, plesures, and the disadvantages. Becuase although non of us want to hear it, there are many disadvantages in EVERY brace, no matter what way we look at it!!!!! so please send me a message back and just talk about the spinecor. I am doing alot of research because i take charge more then my parents do!!

                    Cat Eyes
                    Katelyn
                    13 8th grade
                    Degree= 30
                    in brace= 5
                    Boston brace
                    Want spine cor
                    Katelyn Caralle
                    14 9th grade
                    Curve out of brace:decreased to 15
                    Curve in brace: 0
                    Boston Brace

                    Comment


                    • Cat eyes,

                      I just want to say I admire your spunk. I hope you have ambitious dreams because I think you will do big things in life.

                      sharon
                      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


                      • Cat eyes
                        Dont believe ANYTHING you read on these forums. Everything here is just personal opinions, and they often change.

                        Having said that,

                        For you to have a correction to 5 degrees "in brace" suggests that the Boston Brace is doing its' job. I really dont think you could hope for an initial correction like that with the SpineCor.

                        You are correct, every brace has its' disadvantages, and the SpineCor is no different. There is a lot of marketing hype on the internet for the Spinecor. It is difficult to discern the truth.

                        Good luck!

                        Comment


                        • Originally posted by concerned dad View Post
                          Cat eyes
                          Dont believe ANYTHING you read on these forums. Everything here is just personal opinions, and they often change.
                          I just want to emphatically agree with CD here.

                          There are no orthopedic surgeons on this forum. Those are the ONLY people you can hope to get any straight dope from. We have some chiros here but no orthotists. No matter because neither of these groups can be counted on to have any straight dope. They don't have the requisite training.

                          And given that orthopedic surgeons disagree among themselves, that should alert you to the fact that sometimes, NOBODY knows the right answer. Unfortunately, much of scoliosis treatment is in the category.
                          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


                          • AILEA - I would be curious to hear why your daughter switched away from the SpineCor. Maybe you could reply here or perhaps more appropriately at the end of the “Why I decided to brace my Daughter with the Spinecor” thread.

                            C.DAD
                            A little late, but here you are....

                            We stopped with the spinecor, because when my dd was wearing it for 15 months, she had an in-brace x-rays, and her curve was as big as in the out of brace x-rays when she was diagnosed . She was 15 years old.
                            She didn’t have a great reduction when she was fitted(from 38º to 25º), but I think that as my dd was growing and her curve was becoming less flexible, the spinecor wasn’t able to support the spine. That’s why that day we chose to try with the Cheneau.
                            2004: Daughter diagnosed at 13 L38º. Risser 0.
                            Treatment: Cheneau brace
                            2009: Brace free, 18 years old, Risser 5, L25º

                            Comment


                            • Ailea, Just curious, when the in brace xrays showed the in brace curve had increased to approx 38 degrees what were the corresponding out of brace xrays? (I'm guessing they had to take an out of brace xray to fit the cheneaux brace?) Also, how much time passed between the in brace xray of approx 38 and the next out of brace? How is the cheneaux working so far? Good luck with it. Thanks!
                              daughter, 12, diagnosed 8/07 with 19T/13L
                              -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
                              -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
                              -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

                              Comment

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