Infant with possible Chiari III diagnosis

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Infant with possible Chiari III diagnosis

Postby bridget » Tue Mar 25, 2008 1:03 pm

I am brand new to this forum, and I just found out that my nephew may have Chiari Type III. He is 1 year old. His family has not yet met with the team of doctors to discuss options. Anything anyone can tell me would be appreciated.
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chiari type 3

Postby Sara » Wed Mar 26, 2008 7:09 am

Chiari type III is extremely rare, and is usually diagnosed at birth due to a gross herniation of the brain, including a sac or swelling in the neck area. What symptoms does your nephew have?
Where do they live? perhaps we can recomend a doctor.
Sara
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Postby bridget » Wed Mar 26, 2008 12:40 pm

Sara -

When you read the list of symptoms, he has all of them. He does not have spina bifida. He is currently at Barnes Jewish Hospital in St. Louis and has been seen by a team headed by a Dr. Park. They are talking surgery this Friday, but we are not for sure yet.

We just got this diagnosis 2 days ago. From what I have read, it doesn't sound good. I find a lot of info and hope concerning CMI, but CMIII has little information. I understand it is very rare.

He was hydrocephalic at birth, with many problems, but they just figured this Chiari thing out. If anyone has had experience with this, I would appreciate hearing from you. Thanks.

Bridget
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