I have requested another appointment with the neurosurgeon, and have printed off lost of research ive found.

In the uk...operating on the brain doesnt seem to be a popular option unless life threatening, its so frustrating

thanks everyone

Hello,
I have the same problem. My ventricles are enlarged and the symptoms all started at once. After having a cisternogram done, they said there was no blockage or leak. They said I would have to live with it. They said I was probably born with it.. So I dont know what to do now. Also they found a clover leaf aneurysm on my basilar top artery measuring 8.5 and cant do surgery on it either, because it has 5 other arteries feeding into it. To dangerous to operate. One doctor told me i'm screwed..(JERK). I know how you feel and I'll keep you in my thoughts and prayers. Cheri

I was diagnosed at 2 mo of age with a Dandy-Walker cyst in my 4th ventricle which led to hydrocephalus. I had my first shunt at 2 mo of age, my second at 11 mo, my third at 5 yrs, and then didn't need to be shunted again until I was 32. My first adult experience of hydrocephalus was scary, vomiting, gait, bad headaches, and I received my first adult shunt tap Halloween 2003 and was hospitalized over then next 4 days for a shunt revision. Since then, 2006 and 2009 have been hard on me surgically, as now I face sharp pains in my forehead and back of neck that are not migraine in nature at all. I have had 6 shunt adjustments in 5 weeks, 3 head CT's, and 2 head X-rays. I got my first shunt tap since my last hospitalization last July. I hope my surgeon can find out how to "fine tune" my shunt valve to the right setting, because my original setting at 12 showed overdrainage. I have been set at 15, 18,
20, 16, and now 14 to see if the pain will go away on its own. I'm getting another head CT on Thursday, and I hope it can show something that these past 5 weeks of agony could not.

My 15 year old daughter, Jurie, has Partial Agenesis of the Corpus Callosum (P-ACC). We knew she had dilated lateral ventricles, but we were just told that she has hydrocephalus. The neurologist has said she doesn't need a shunt. I am not so sure because she has all the classic hydrocephalus symptoms and has had them for years. She has had severe headaches and vomiting since she was around three years old, but the doctors never knew the reason why. She has also always been a little too aggressive and is getting even more so to her brothers and sister. She also had her eye pressures taken for the first time recently, and they were fairly high: right eye-28 mm Hg and left eye-25 mm Hg.