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  • Originally posted by emarismom View Post
    Yes it has been a long haul! At 5 years old with a 30 degree curve, it did not look good, that is for sure!!

    Maria, decompression surgeries do tend to stabilize a Chiari related curve, and in Emily's case it did stop the progression of the curve for many years. I braced her because I knew that there was still a high risk of progression. Her curve did progress, we were just very lucky it did not get to the surgery range. I attribute her making it through puberty without reaching surgery range to the Spinecor Brace, not the surgery as the surgery was done in 2004. In 2010-2011, the curve was getting worse, but she was braced.
    Is far to be the first time I hear about a very good case using the Spinecor. I think the idea behind it is fantastic!

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    • Originally posted by emarismom View Post
      It has been quite awhile since I have posted here. Emily is now 15. She is a Riser 5 and has been for over a year. She was initially diagnosed at 5 years old with a 30 curve, as well as Chiari and Syringomyelia. She had a decompression surgery in 2004. Her curve went up and down repeatedly over the years. She wore a Spinecor brace for 5 years (aged 8-13). She never did any exercises or any other treatments. We stopped bracing 18 months ago when it was determined she had reached full skeletal maturity. At that time she measured 40 degrees. 6 months prior to that she was 43 degrees. Today we had our 1 year check. As unbelievable as I find it, she was at 38 degrees!! She has remained with a 5 degree margin for 18 months.

      If anyone would have told me 10 years ago that my daughter would be able to avoid a fusion surgery, I would not have believed it. I barely believe it now. There is no question that her decompression surgery initially improved and stabilized her curve. However, had she not been braced during her adolescent growth spurt, she would have reached the 50 degree mark. That I know for a fact. She wore her brace religiously for 20 hours a day at least. I hope that our story helps others
      It's always great to hear news like this! I just have to say there are so many things available these days that can help kids. It's so amazing when you actually read about successes like this. Now your daughter can get on with the business of living!

      Congrats!
      Be happy!
      We don't know what tomorrow brings,
      but we are alive today!

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      • on March 17 2014 my daughter had a recheck... she has been out of brace for over a month & remained at 8 degrees!!! She is almost 14 and 5'7". We will continue to do physical exams (not more x rays unless something is spotted) every 6-9 months until she has finished growing, we are pretty sure she is close to being done w/ growth.

        What a LONG haul but she did it, I am very proud of her!!!
        from CT, USA
        6 year old daughter diagnosed 7/06 33* T9

        Spinecor 8/06 - 8/2012
        8/06 11* 3/07 5*-8/07 8*-2/08 3*
        10/08 1* 4/09 Still holding @ 1*
        10/09 11* OOB 4/10 Negative 6*
        10/2011 Neg.11* IB 11yrs old 0 rotation
        4/2012 12* OOB 0 rotation
        8/2012 18* OOB for 2 weeks. TSLO night time
        2/2013 8* OOB 3 days TSLO nightime
        3/2014 8* Out of Brace permanently

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        • Wow that was a long haul but you have apparently succeeded! Congratulations!

          As I think it is unlikely a 33* would have resolved on its own, I think this is a JIS bracing success case. And with a 25* reduction to <10* which makes it technically a cure in my opinion. 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


          • Originally posted by christine2 View Post
            on March 17 2014 my daughter had a recheck... she has been out of brace for over a month & remained at 8 degrees!!! She is almost 14 and 5'7". We will continue to do physical exams (not more x rays unless something is spotted) every 6-9 months until she has finished growing, we are pretty sure she is close to being done w/ growth.

            What a LONG haul but she did it, I am very proud of her!!!
            There should be "like" buttons on here! That's GREAT news!
            Be happy!
            We don't know what tomorrow brings,
            but we are alive today!

            Comment

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