New Diagnosis in Florida

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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New Diagnosis in Florida

Postby DBochishaw » Tue Jul 24, 2007 2:39 pm

Hi. My 12-year-old daughter has just been diagnosed with a syrinx. She has had a 20 degree scoliosis curve for the last three years. Our new ortho said the curve was "atypical", sent her for an MRI, and the syrinx was found. The ortho did not give us much information, but said it was "the smallest syrinx he'd ever seen." He said to research syringomyelia on the web and see a pediatric neurosurgeon. I've been reading as much as possible before actually seeing a ns. Is anyone out there in the Palm Beach or Broward areas of Florida? Does anyone know of a doc in the area with experience in this? The ortho gave us a name, but being that we had just met him, I'd be more likely to trust people that are actually going through this. Thanks.

Postby emarismom » Tue Jul 24, 2007 5:31 pm

Hi, very sorry for the diagnosis but you have come to the right place as the support you will find here is wondreful. My daughter was diagnosed with chiari,syrinx, and scoliosis in 2004. She was 5 then. Now she is 8. We too live in South Florida. Her nuerosurgeon is Dr. John Ragheb at Miami Children's Hospital. He did her decompession in Nov 2004. I can not say enough about him!! He was wonderful and she has been doing wonderful since.

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Postby DBochishaw » Wed Jul 25, 2007 7:29 am

Thanks for the name. I knew it would be easy to find someone in Miami, but since we are an hour and a half's drive away, I was hoping for someone closer. Nonetheless, it will probably be worth doing the drive...Thanks, again. --Debbie

fl surgeons

Postby Sara » Wed Jul 25, 2007 3:31 pm

My daughters are treated in St Petersburg by Gaskill, Carey and a group of others. I have been happy with them. for many years. Here is the website:

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