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  • mom2

    i just responded to wendy but not sure if all will read. my son is 8 with a 27degree curve. he is in a wilmington brace. his mri showed chiari but no syrinx. no neurological symptoms so we have gotten various opinions on whether to decompress. has anyone gone through this without a syrinx? there is not much research or results without syrinxes and scoliosis. believe me my husband and i have researched everyone and are going to see many writers of papers that do sort of apply. of course not one agrees on what we should do. any ideas? thanks a lot

  • #2
    We have a Chiari too

    My daughter was just diagnosed with the Chiari and an "enormous" syrinx. We are scheduled for surgery on January 4th. It sounds like you guys have done lots of research and I would love to know the websites you have found helpful. If you'd be willing to share, I also like to know how your son is doing and what you guys have decided to do.

    My daughter has no neurological difficulties and we would have never suspected anything if not for her right shoulder blade suddenly being out of place. Hope things are going well! This is such a rare condition, that I don't have many people to talk to :-).

    Happy Holidays to you and yours! Christle

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    • #3
      chiari

      christle,
      sorry to hear about your daughter's chiari. i will tell you this. out of 6 0r 7 neurosurgeons only two said not to decompress. if he had a syrinx they wouldn't hesitate at all. my son was hoping to have it done and get rid of the brace. his last check up in october showed his upper curve had not progressed and his lower curve actually improved. we decided to hold off until april for his next back check. i am sorry this is late. i just realized you are at the hospital now. i pray all went well!!! our research won't help you now unless you still would like it. i think your next big choice was which decompression operation to have performed. that will be a tough choice with us if the time comes. which did you do? please keep us up to date. i know she will be much better if the syrinx shrinks. eileen

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      • #4
        Decompression Update

        Hi! I've not been to this site in awhile. Cailie Grace is one month post op and doing fabulous! She just discovered that she can do "flips" agian. Yikes! I made her stop, but still thrilled that she is healing so well.

        She had decompression with a dural graft. Bovine. There was no swelling, no leakage. Two stitches fell off today, they are absorbable.

        I check her back all the time and it looks like it is straightening, but her height is the same :-). Her rib isn't sticking out as much, either.

        We were in the hospital for a week, but it was soooo much easier than the days squishing her into a brace.

        Hope you guys are doing well. Christle

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        • #5
          MRI showed syrinx

          My 8 year old son had an MRI done today and the tehnician told me that it showed a syrinx. I am not sure where is localized, I need to wait for the results, but I am very worried and I don't know what to expect. I almost can see my son paralyzed from the syrinx that is getting to big and pressing on the nerves. Has anyone gone through this before? Any replies will be appreaciated.
          Thank you very much
          Adriana
          Adriana, mom to Luke and Mark
          Luke is 10 years old in spinecor since november 2006 and his curve is 6 degrees in brace from 31

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