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  1. #1
    Join Date
    Aug 2009
    Location
    Elmhurst Illinois
    Posts
    10

    Chiari Malformation

    We found out that my 12 year old daughter has scoliosis in May of 2009. She had taken the the Scoliscore test and scored 65 out of 200, which is on the low end of what her progression should be. We took her back to the scoli doctor in September, her curve progressed another 10 degrees in 4 months time. Her doctor was pretty shocked the she progressed so much in that short of time considering what her score was. He suggested that we put her in Lyon brace for 18 hours a day and he ordered an MRI. She had her MRI in beginning of November and we saw him at the end of November. Her curve increased again and the MRI results said she has Chiari 1 Malformation. She no Chiari symptoms, not even one and that surprised him also. He said we needed to see a pediatric neurologist. So off to the neurologist we went. He ordered another MRI and we waited for his phone call. Once he received the test results he contacted her scoli doctor and they came to the decision that she needed to have surgery soon. Doctor said she has minimal spinal fluid in her spine because of this and this is why her curves are progressing so much. We are going there on Monday to discuss the surgery and to set things up. I have been reading what I can find about Chairi but I was hoping someone on here would be able to tell me what to expect. What was the surgery like, how long was it, what is the recovery like, are there any questions you wanted to ask but had forgotten or thought about later? Any advice would be great appreciated.
    Last edited by wigglesgiggles; 01-23-2010 at 10:20 PM.

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