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Doctors wait too long to brace for JIS?

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  • #16
    Hi Guys,
    Well for 34 years I was definately part of the general population. I had my surgery and that was it, on with life. Never had a problem, never even thought about it, never had to until 1997, but even now I am still part of the crowd, albeit hobbling a bit.

    Macky xx
    Last edited by macky; 04-25-2009, 12:37 AM.
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

    Comment


    • #17
      Bracing JIS

      leahdragonfly

      I've read loads of threads about young children with progressive curves that doctors don't want to brace until the mid 20s. To me that is crazy. I'm glad that's not the official policy but sadly it happens all the time.

      The thought of bracing my son breaks my heart. If my son's case is progressive I hope that night bracing is all that he will need. I live in the sunbelt and so 23/7 bracing isn't really an option except for short periods. If night bracing won't correct or hold my son's curve I hope that at the very least it dramatically slows progression. Bracing is the only therapy available that buys him time. Hopefully his curve won't exceed 35 degrees which would allow us to do VBS when he is 10 or 11. That's 4 or 5 years off for us.

      Obviously my dream scenario is that his curve corrects or holds without any treatment or at worst night bracing for a few years. His curve is somewhere between 10 and 15 degrees so there is still a small chance of that.
      Last edited by Dingo; 04-24-2009, 10:35 PM.

      Comment


      • #18
        Sharon, I see in your prevous post, I asked the same question. oops. If he tells you the research/evidence he has read to come to his conclusion in future visits, would you mind letting me know? I'm very interested in reading it. .
        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


        • #19
          Originally posted by jillw View Post
          Sharon, I see in your prevous post, I asked the same question. oops. If he tells you the research/evidence he has read to come to his conclusion in future visits, would you mind letting me know? I'm very interested in reading it. .
          Yes of course. I won't see him until September, though.
          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


          • #20
            Actually................

            Actually at Shriners Hospital for Children they start bracing at 20 degrees. And they are very nice and good there!

            Comment


            • #21
              Personally I think it is really silly to wait until they are exactly at 25 degrees. Even if they may not really need it it is better to treat early then wait until it gets to the surgery point. A 22 degree curve is a lot easier to deal with and fix with a brace than a 40 degree curve. Some doctors believe that and will even start bracing at 15 degrees (anywhere below 10 is considered normal)
              Plus if you have a 20 degree curve and you have a lot of growing to do it is most likely going to get worse, why wait that extra 5 degrees? Maybe bracing at 20 will prevent it from even getting there.

              Comment


              • #22
                Originally posted by S4Sarah View Post
                Personally I think it is really silly to wait until they are exactly at 25 degrees. Even if they may not really need it it is better to treat early then wait until it gets to the surgery point. A 22 degree curve is a lot easier to deal with and fix with a brace than a 40 degree curve. Some doctors believe that and will even start bracing at 15 degrees (anywhere below 10 is considered normal)
                Plus if you have a 20 degree curve and you have a lot of growing to do it is most likely going to get worse, why wait that extra 5 degrees? Maybe bracing at 20 will prevent it from even getting there.
                Would you be willing to wear a brace if 70% (or more) of kids who were braced shouldn't have been either because the curve progressed anyway or their curve would not have progressed anyway? That is the state of affairs as far as we can tell at this point.

                What about if it is 80%? What about 90%?
                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


                • #23
                  Good point Sharon

                  Thank you Sharon, for pointing that out. That has been my position as well all along--is it right to inflict bracing on children knowing that 70% of them or more are being treated unnecessarily??

                  We braced our daughter at age 6 for 5 months and fortunately her very pliable curve reduced enough for her to try being brace free for a while. She has been holding stable at about 20 degrees now for 8 months without bracing, and can continue to be brace-free as long as the trend continues. She will be rechecked in September, so that will be a year out of brace. Our family is absolutely thrilled that she has had (at least) one year of a normal childhood without a brace, as well as normal development of her trunk muscles and ribs.

                  My point is, some people feel you should start bracing at well under 20 degrees, and maybe in some cases it is warranted, I don't know, but it seems like a good idea to see if the curve is of the progressive type before bracing. Because if the curve is non-progressive, that means it will maintain itself without a brace. And isn't that great!

                  BTW S4Sara, a brace will never correct a curve, so to say "it's easier to fix a 22 degree curve than a 40 degree curve" with a brace is incorrect. A brace is meant to control progression.
                  Last edited by leahdragonfly; 05-24-2009, 03:20 PM. Reason: typo
                  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


                  • #24
                    What is the difference between reducing a curve and correcting it? Maybe it's just semantics but I do not understand (genuinely, I'm not trying to pick a fight here) the absolute statement I often read (not just Gayle's) that a brace will never correct a curve. I agree that it won't correct it 100% but I view a meaningful reduction that lasts through growth as correction. Is it that you view correction as meaning only complete correction?
                    Last edited by mamandcrm; 05-24-2009, 04:31 PM. Reason: Got interrupted writing; added a bit
                    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


                    • #25
                      How to handle the issue of "to brace or not to brace" is really a personal issue for the parent when it comes to JIS. I weigh the pros and cons of bracing my daughter every single day. I realize it may or may not be keeping her stable. The truth be told I know she was not progressing when I braced her. Does that mean that she won't progress, no. Should I have waited until she DID progress to do something about it, what if she had a rapid progression in a 6 month period, then factor in the time it takes to get a brace. Instead of looking at a 24 degree curve,I could have been facing 30, or 32, or 35.

                      In my case I KNOW that no brace will control her curve if it does start to progress. I hope that by bracing her I am buying her time to grow. In many ways I do agree with Sharon that maybe in the long run, surgery is the best option. However, my daughter has already been through one surgery and is terrified at the possibilty of going through another one. (The first one is a piece of cake compared to fusion).

                      There are a great many issues to consider when it comes to JIS. It really depends on how much risk we as parents are willing to face. At this point in time there is no right or wrong answer.
                      Emily's mom-11 1/2 years old
                      28 degree scoliosis 9/04
                      Chiari Malformation/SM decompressed 11/04
                      17-24 degrees 11/04-6/07
                      Wearing Spinecor Brace since June 07
                      3/31/10- 29 degrees oob
                      11/18/09 17 degrees in brace

                      Comment


                      • #26
                        Originally posted by leahdragonfly View Post
                        Thank you Sharon, for pointing that out. That has been my position as well all along--is it right to inflict bracing on children knowing that 70% of them or more are being treated unnecessarily?
                        I have never worn a brace but I can read testimonials that have broken my heart and haunted me. Being cavalier is not appropriate when discussing bracing kids. Suggesting bracing smaller curves which are known to be LESS likely to progress is very cavalier in my mind. In this group especially, it could very well be the case that 90% or more will not progress even if you do nothing. Yet bracing kids with smaller curves that don't progress will always be chalked up to brace success. That is simply not scientific.

                        We braced our daughter at age 6 for 5 months and fortunately her very pliable curve reduced enough for her to try being brace free for a while. She has been holding stable at about 20 degrees now for 8 months without bracing, and can continue to be brace-free as long as the trend continues. She will be rechecked in September, so that will be a year out of brace. Our family is absolutely thrilled that she has had (at least) one year of a normal childhood without a brace, as well as normal development of her trunk muscles and ribs.
                        I think you have the right perspective on the situation. I think you are a textbook case of how to make an informed decision and continue to do so going forward.

                        My point is, some people feel you should start bracing at well under 20 degrees, and maybe in some cases it is warranted, I don't know, but it seems like a good idea to see if the curve is of the progressive type before bracing. Because if the curve is non-progressive, that means it will maintain itself without a brace. And isn't that great!
                        It's that cavalier attitude. And nothing like setting the bar low (bracing curves that most likely will not progress) to get the results you wanted ahead of time.

                        BTW S4Sara, a brace will never correct a curve, so to say "it's easier to fix a 22 degree curve than a 40 degree curve" with a brace is incorrect. A brace is meant to control progression.
                        Yes. There is an ocean of misunderstanding on this point. Underlying most of these comments is the ASSUMPTION that bracing works. That may not be a good assumption.
                        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


                        • #27
                          Originally posted by mamandcrm View Post
                          What is the difference between reducing a curve and correcting it?
                          Not sure but I would say:

                          reducing = lowering the angle

                          correcting = getting the angle below 10*

                          Maybe it's just semantics but I do not understand (genuinely, I'm not trying to pick a fight here) the absolute statement I often read (not just Gayle's) that a brace will never correct a curve. I agree that it won't correct it 100% but I view a meaningful reduction that lasts through growth as correction. Is it that you view correction as meaning only complete correction?
                          No the comment that braces never correct a curve refers to the fact that they have never been shown to permanently reduce a curve. That is, no matter what your in-brace correction, you are expected to return to the out-of-brace angle after removing the brace. At present, the only credible claim made for braces is that they might prevent a worsening. There is no evidence of a permanent reduction from bracing nor is it the claim.
                          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


                          • #28
                            Originally posted by emarismom View Post
                            There are a great many issues to consider when it comes to JIS. It really depends on how much risk we as parents are willing to face. At this point in time there is no right or wrong answer.
                            Totally agree when it comes to JIS! Well stated. Truly.
                            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


                            • #29
                              Originally posted by Pooka1 View Post
                              There is no evidence of a permanent reduction from bracing nor is it the claim.
                              By "no evidence" do you mean no studies (agree) or that no child anywhere at any time has ever experienced a reduction in their curve that has lasted through growth and not increased after brace wear ceased?
                              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


                              • #30
                                Originally posted by mamandcrm View Post
                                By "no evidence" do you mean no studies (agree) or that no child anywhere at any time has ever experienced a reduction in their curve that has lasted through growth and not increased after brace wear ceased?
                                In re the latter, if there are kids like that who are wearing a brace, we can't assume the brace is what held the curve rather than the child having a non-progressive curve.
                                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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