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Have to share my excitment!

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  • #1

    Have to share my excitment!

    Hello everyone! I haven't been on here in a very long time but I wanted to share with people who would understand. Brief background, my son Tyler was diagnosed with Idiopathic Infantile at 9 months. With a starting degree in the 30's I believe. We have gone through 4+ TLSO braces with no luck, his back progressed over time to 65 degrees. He will be 5 April 17th. We have seen Dr. Ashfin Aminian every 6 months since he was diagnosed. Well as we were right about to move to the next step we decided to try a nighttime bending brace aka, Charleston Bending Brace to see how that worked.

    We went to his biannual visit yesterday to see that in 6 months he improved to 52 degrees!! I'm so happy. I know it's not cured, I know that the likeliness of surgery is still prevalent one day, but any improvement is a win in my book! So we are definitely going to continue on with this brace for the time being. I just had to share.
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  • #2
    Woo-Hoo!!!

    That's fantastic! I hope you continue to see great results!!

    Michele
    DD/12 yo.
    diagnosed 1/9/09 at age 11-- 30*, 19 * S-curve- recommend wait/watch
    3/16/09- 32*, 23*
    5/14/09- 42*, 32* fitted for Boston Brace
    7/2/09- in brace x-ray- 16*,20*
    11/6/09- out of brace 24 hrs x-ray- 26* top curve, 18* bottom curve
    03/11/10- out of brace 24 hrs x-ray- 24* top curve, 16* bottom curve

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    • #3
      Very Promising!

      I wish you and your son continued success.
      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."

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      • #4
        Great news!! I'm so happy for you and Tyler.

        Dr. Aminian's name is also listed on the VBS site as one of only a handful of surgeons in the country performing the procedure.

        My best wishes to you for continued success!
        mariaf305@yahoo.com
        Mom to David, age 17, braced June 2000 to March 2004
        Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

        https://www.facebook.com/groups/ScoliosisTethering/

        http://pediatricspinefoundation.org/

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        • #5
          Originally posted by mariaf View Post
          Great news!! I'm so happy for you and Tyler.

          Dr. Aminian's name is also listed on the VBS site as one of only a handful of surgeons in the country performing the procedure.

          My best wishes to you for continued success!
          I LOVE Dr. Aminian. He is a fantastic doctor. He does everything he can in Tyler's best interest. If he was a General Prac. I'd switch my entire family to him.

          Thank you all for your kind words!!!

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          • #6
            That's great - I hope he turns out to be one of the children whose growth works IN his favor!
            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

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