Is there anyone on here who has hydrocephilis?
There doesn't seem to be many forums at all that deal with it in adults.
I found 1 site a couple of years ago but didn't like it much as all they talked about was how bad they felt, and whenever I tried to be positive about the condition it didn't go down too well.
I have communicating hydrocephalus. I had to have a peritoneal shunt placed in 06. Since I have had two revisions of my shunt. I have many conditions along with communicating hydrocephalus. As long as you have the proper treatments and it is well monitored you're pretty much good to go!!
I don't know what communicating hydrcephalus is,but in my case,I was 7 years old and suddenly started having all ths problems with vision control of bowels headaches,etc. Nothing happened to me to make this happen--no trauma,etc., after many doctors I was found to require a shunt. A torkildsen shunt. No such thing as peritoneal shunt in those days (1965) they actually went into the skull and placed it near the brain. It was a very extensive procedure back then. I required a revision 2 days later and they had to redo surgery. I was 7 years old. My family and I were under the impression I was cured. I did remarkably well. At 18, I joined the Air Force and got a clearance from neuro doc and Air Force. I served 19.5 years in service and started having problems again. So 31 years after shunt placement I required another revision,this time a peritoneal shunt because the last shunt cannot be removed, So today I have a non working shunt and a working one. That was 1997. I had severe difficulties with that revision bleeding ,infection,etc.,
In all,I had 7 surgeries including total removal of left side of my skull due to infection,and 6 months of antibiotics and eventual reconstruction of skull. Today I can do almost anything I want (with limitations) but not many. I just have to be aware of my condition and seek treatment if I feel strange. Hydrocephalus changed my life,but it is not a death sentence
I hav ehad hydrocephalus since 1987 (age one), and have only had one shunt revision in 1988. Communicating hydrocephalus means that the cerebrospinal fluid can flow through the ventricles but cannot be absorbed, whereas non-communicating or obstructive hydrocephalus means there is an obstruction in the ventricles. At least that is what I think I remember from when I was active on neuro forums many years ago.