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  • Carly's mom,

    My situation is different from yours but I do have some suggestions. First of all, if there is a "mild chiari", then you need to have the MRI films seen by a good neurosurgeon who KNOWS about chiari. The chiari is often the cause of the scoliosis, and once that is treated it can help to stabilize or in some cases improve the scoliosis.

    Some of the symptoms you describe may be attributed to Chiari and not to the scoliosis. Was the MRI brain and full spine? What else was noted on the report?

    I am currently seeing Dr. Ouelette who is in Atlanta. He does have an office in Texas, but I am not sure exactly where. If you send me a private message, I will give you his information.
    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


    • I feel that our experience on this forum is that these larger curves (30 degrees and up) do not hold forever in Spinecor. They seem to have an initial positive response in the first year, followed by a fairly rapid deterioration. I would try something different and wish I had 6 months ago when I first saw progression.
      Rachel is now in the Cheneau made by Luke Stikleather of Fairfax, VA. It is not anything like an off the shelf Boston, this is a TOTALLY different brace. Rachel gains over an inch in height in brace. She got no correction in a Boston, not one degree. He trained with Manuel Rigo in Spain and makes an amazing brace. He doesn't promise anything, but has achieved correction in some cases. He is a prince of a guy.
      I am interested in incorporating the Schroth exercises with it and will let you know if I go that route.
      I would be thrilled if there were any improvement, but would be satisfied to hold her the next 2 years of growth.
      We will have in brace x-rays in a few weeks.
      Best of luck.
      Last edited by cherylplinder; 01-10-2008, 03:10 PM.
      God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

      Comment


      • Yes, I came across him on the internet. I think he is in Houston. I had actually talked with him over a year ago in the fall. I will give them a call. Dr. Deu...l caled me and the prices are the same as they were last year. Without taking insurance it would be very costly for us but we will still think about it. Thanks for the feedback.

        Comment


        • Cheryl,

          I wish Rachel the very best. I was actually thinking of going there. My sister lives right around the corner from Fairfax. But by the time things got bad for Nicole, we felt it was time for surgery. Also, Nicole was already 5'5" and done most of her growing. But I always had the Chenau in the back of my mind. How has she adjusted to it?
          Melissa
          From Bucks County, Pa., USA

          Mom to Matthew,19, Jessica, 17, and Nicole, 14
          Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

          Comment


          • She is adjusting well to the brace. It is 100% more comfortable than the Boston she was in as her first brace.

            If she were not still risser 0 and at least a year premenarchal, I might not be so aggresive with trying to hold the curve.

            I have another appointment in St. Louis(I don't know which doc) for their input and because it is much closer to home. If I don't decide to staple her lumbar, I might go there. Dr. Betz offered the option of stapling her lumbar and fusing her structural curve. I asked if he would be willing to do that and they met on it this week. They were willing to try it, but didn't feel they could get more than 20 degrees correction(to 32 degrees). I am not sure that with that much curvature left for the lumbar to try and balance that it would all work out. If she could get 60% correction of the thoracic curve, or even 50%, the lumbar would be in the 20's and might hold. I just don't know.
            If you fuse one curve and the other progresses, that's 2 surgeries.

            It's a lot to think about.
            Last edited by cherylplinder; 01-05-2008, 09:09 AM.
            God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

            Comment


            • hi carly's mom-

              my daughters curves are 47' and 45 ' . she is wearing a cheneau brace and actually has a correction to 29' and 24' i think. I would definitley look for at a least a correction in the brace. we are going to a scroth clinic at the end of March for the therapy- I too am hoping to avoid surgery!!

              take care,
              helen

              Comment


              • Cheryl, I have been thinking about Rachel and wondering what you were going to do. It sounds like you have been very busy and moved very quickly and I'm glad to hear that it is more comfortable than the Boston brace...i was actually (pleasantly) surprised to hear that since i have heard the corrections tend to be better in her current brace so I wondered if it would be harder to wear. Good luck!!!!!!!
                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


                • Hi,
                  I've Been reading about the Spinecor braces 4 a while now.
                  I'm just wondering how you go to the toilet in them?
                  Are they more comfy than the boston brace ive been in 4 2 years now
                  i would love it if some1 could answer these.
                  Thanx, BraceGal
                  HI! I'm Tayla
                  I Wore A Boston Brace For 5Years!
                  It Was Taken Off May 10.
                  But... After a Review in Nov 10 My Back had got badd!!
                  Im Now On The Waiting List For Surgery To Get The Bottom Curve Fused.
                  pre surgery:
                  51 at the top.
                  49 at the bottom

                  <3 Tayy
                  S COLIOSIS
                  Makes Us Stronger... <3

                  Comment


                  • SpineCor

                    Hi BraceGal,

                    To use the bathroom, you unsnap the two small straps that go between the legs. Most people also wear a bodysuit with snaps between the legs. Some people have sewn snaps into their underwear as well.

                    We have not used a Boston brace, but my daughter is comfortable in her brace. She prefers wearing it to not. It did take a few weeks to get used to though. The only time she does not like to wear it is after wash day as it shrinks up a bit. It takes her about 10 min. to get used to it again.

                    Hope this helps.

                    Sarah

                    Comment


                    • Thanx
                      Thats really useful to know
                      so the spinecor is on in sport to?
                      That must be a bit werid but must make it like ur not wereing a brace at all
                      im really wanting one of these braces but there not in vic, Australia
                      but theres no harm in asking?

                      BraceGal (boston brace 2 years!)
                      HI! I'm Tayla
                      I Wore A Boston Brace For 5Years!
                      It Was Taken Off May 10.
                      But... After a Review in Nov 10 My Back had got badd!!
                      Im Now On The Waiting List For Surgery To Get The Bottom Curve Fused.
                      pre surgery:
                      51 at the top.
                      49 at the bottom

                      <3 Tayy
                      S COLIOSIS
                      Makes Us Stronger... <3

                      Comment


                      • Bracegal:

                        My son (age 12) wore a Boston brace for 6 months before switching to SpineCor. He finds it much more comfortable, and he doesn't have to take it off for phys ed in school--also his clothing fits better. Recently an alternative to snaps has become available. It's a pair of shorts with velcro, and the straps velcro to the shorts. The shorts have a flap so you can go to the bathroom, which may make it much easier to wear for boys than girls, but I thought I'd at least let you know. Good luck!

                        Comment


                        • Wearing brace for sport.

                          Hi BraceGal,

                          I wouldn't say it is not like wearing a brace at all, but you can do a lot in it. My daughter wears it for all sports except for the the uneven parallel bars in gymnastics and swimming of course. She wears it for basketball, baseball, dance, rock climbing, sledding, snow boarding, skiing, etc. She also wears it for any sports they do in gym class.

                          Sarah

                          Comment


                          • Bracegal,

                            How large is you curve?
                            God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

                            Comment


                            • Sarah,

                              Hoping all goes well with Madeline's appointment tomorrow,

                              Laura
                              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


                              • My curves

                                umm i dont really no ive been in a brace 2 years and when i was only put int it because i have other medical probloms as well, my curves werent in the braceing cadagorie

                                Tayla
                                HI! I'm Tayla
                                I Wore A Boston Brace For 5Years!
                                It Was Taken Off May 10.
                                But... After a Review in Nov 10 My Back had got badd!!
                                Im Now On The Waiting List For Surgery To Get The Bottom Curve Fused.
                                pre surgery:
                                51 at the top.
                                49 at the bottom

                                <3 Tayy
                                S COLIOSIS
                                Makes Us Stronger... <3

                                Comment

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