Adult with Dandy Walker Syndrome; Hydrocephalus

[ozwinkie]

My 32 year old son was born with Dandy Walker Syndrome and also has ventricular Hydrocephalus.  He has a VP Shunt in the ventricles and a cystoperitoneal shunt in the Dandy Walker cyst.  He had many, many shunt revisions as a child/young adult, but had gone 19 years in between shunt revisions up until March, 2008.  Mid-March he got up one morning with retracted eyelids (similar to Graves' disease where the whites show too much above and below the pupils) and restricted eye movement as well as dizziness.  After almost a week, we were able to get him admitted to the hospital where, through a nuclear med shunt flow study, it was determined that the cystoperitoneal shunt was not working and it was replaced.  After two days to recover from the surgery, he had one good day where his eyes looked normal again, he was able to get up, dressed, enjoy visitors, etc.  The next morning, as he sat up, his eyes popped wide open again and ever since he has had difficulty focusing up close to read, etc., can no longer play video games because of vision issues, has short term memory loss, difficulty with balance, neck pain at the base of his skull, and is beginning to have "spells" that the only way he can describe as being "freaked out".  Travis was fairly high functioning prior to this latest mishap.  The neurosurgeon keeps telling us that these things will resolve with "time" (Travis hates that word) but he isn't getting any better.  Does anyone know of a neurosurgical specialist in the Kansas City, KS/MO area who treats adults with Hydrocephalus?  I think we've exhausted the expertise available in Topeka and need to go elsewhere.  

Thanks.  

Deb