I had shunt originally placed in January '70, I have had 4 revisions, that's it, three before I was ten and another one in 2006. I don't understand these individuals that have so many revisions they lose count. The doctor who originally place the shunt was considered to be one of the best pediatric neurosurgeons in the world, but still why can't doctors get it right, it is not a rare surgery as it was when I had it done. I am a guinea pig, Unfortunately, it can be difficult for doctors to be completely proactive with me and tend to be a little more reactive. I was recently diagnosed with Epilepsy, when I asked my neurologist if the shunt had anything to do with it, he said plainly it's possible you have a foreign body in your head.

Hi Andrew. I am 36 yrs old, I was diagnosed and shunted in 1976, at 6 mos. old. I've had 12 revisions, 2 of these being replacements. Reading everyone's stories and experiences here helps me realize, after all these years, that I've not been alone in this thing.

I agree. I'm 38 and have been shunted since age 6 months. I luckily only had two revisions as a kid at age 4 and age 18 but have had major complications since then including a peritoneal cyst that turned my abdomen into a giant adhesion, so I now have a VA shunt. I realized recently I've never met anyone else with hydrocephalus, who did not have a significant intellectual disability, so I felt very isolated. It has been so nice to "meet" so many people with similar experiences.

I realized the very same thing and then I took a vacation this summer with some old college friends, and one of them brought along one of her friends who also has hydrocephalus, but neither of us knew it. She's the only other person with hydrocephalus I've ever met who did not have a mental disability accompanying her hydrocephalus. It's nice to compare stories and with a few minor differences, our stories are almost parallel.

Hey ladies, if you are on Facebook, you should join the group "Women with Hydrocephalus". I've found it very helpful and it always has fairly active discussion. Check it out!

I tried looking for this group, but my search results came up empty.