[jamiya'smom]

Hello, I am happy that I found this site. My 4 year old daughter has hydrocephalus and a vp shunt. She has had 14 revisions, with the latest being this Monday December 21st. I am very concerned because her shunt malfunctions are now causing seizures. The doctors seem to think that it's nothing to be worried about. I have been reading that the seizures can be due to the scar tissue for the multiple revisions. I don't understand why they can't get it right. How much can her brain take? They tell me that it does not cause brain damange to do a revision but I am not so sure. She is such a little trooper, but the seizures are really scary. Can anyone relate and or have any suggestions.

[jeff179120]

Hello, I'm a 54-year-old adult, who was diagnosed with hydrocephalus in 1998, at which time a vp shunt was installed. So, I've now had the shunt for close to 12 years and I have never had a revision and I still suffer seizures. I take gabapentin twice daily to combat the seizures, but I still suffer occasional disruptions several times a week, including a seizure just before I wrote this post. Since I have never had a revision and I still suffer seizures, I can tell you your daughter's problems with seizures may not be related to the revisions. I used to panic during seizures, but if I visited the hospital, the doctors would just say you've had a seizure, go home. They have upped my medication twice, but the problem with seizures, so I'm told, is just part of the hydrocephalus, even after the shunt placement. Hope I've helped, but remember I'm not a doctor. It may be best to check with your physician.

[marisol9396]

Hi my best friend was diagnosed with an A.V.M on her brain stem which caused her to have hydrocephalus, she was shunted 3 years ago at 28 with 6 revisions in a ten month period. She was a happy healthy normal woman who now has seizures that are uncontrollable, she is on Dilantin, topamax, and vimpat and now every time she goes to the e.r. they are now telling her they are pseudo- seizures, these are the same doctors who shunted her to begin with. Shunts were made for babies and small children not adults. now the doctors who did this will no longer help her, and the Vimpat has been the only medication that works for her and she can't afford it because it's a new drug and she can't keep a job because she has so many seizures. medicaid has denied her, disability has denied her, and the doctors won't help her because she has no insurance. does anyone else seem to think that the shunts are causing the seizures. There are alot of reports on the web that seem to indicate that.

[jasontaub23]

I have a shunt, I was one of the first people on the planet to have the surgery. I have had a shunt over 40 years. No issues as of yet, however I was just diagnosed with epilepsy. Questions, even though I AM NOT A DOCTOR, I can try to answer what it has been like. I have had 4 revisions, since initial placement. Original placement Jan '70.