Greetings:

I was browsing the Internet hoping to find a support site for hydrocephalus and it looks like I've been successful. I am truly hoping to receive support and honesty from everyone. To briefly explain my situation, I was diagnosed with hydrocephalus in late 1995 & had shunt placement surgery in 1996 four months after my oldest son was born. The shunt overdrained and I had to have a revision less than 30 days of the original surgery. Recovery was very rough, but after about a year, fortunately, I was able to resume somewhat of a 'normal life.' From 1997 to 2005, things went well. Around July of 2005, I began experiencing some of the same symptoms and was eventually told the hydro was back. At the doctor's urging, I had surgery to have a 2nd shunt placed on the opposite side of the brain (right). I now had two shunts, one which supposedly stopped working. I was in such bad shape after the 2006 surgery that I could no longer walk, write or function without assistance. Problems arose almost immediately, but the ns ignored my pleas until it was almost too late. Finally, about 6 wks later, the newest shunt & a blood clot had to be removed since my brain started separating from my skull. I haven't been the same since & a few days ago, a new ns said the hydro is building up again & I need surgery but I really don't want to have it in spite of the risks 'cause the last surgery was so horrible. Does anyone have info on how long someone with untreated hydro can live? I read that untreated hydro can be fatal. I asked the ns this question, but he didn't respond. I've already had 4 surgeries which obviously hasn't worked 'cause he says I need yet another one. I'm really OVERWHELMED so please share your thoughts.