[BabyGyrl]

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.

[jmw1975]

Have you seen more than one neurosurgeon? Just curious. I don't know about the effects of nontreatment, but I do know that it can be fatal. PLEASE don't let it go untreated. I will keep you in prayer.

[LIZARD]

((((((((((((HUGS))))))))))))).

I'm sorry you're having such a hard time. Unfortunately, hydro is one of those conditions that necessitates repeat surgeries for nearly all of us. Without surgery when you start to fail, you will very likely die, and depending on the reason for the shunt failure, it can take months or hours.

Please re-think this! Death from progressive hydro is the worst kind of torture. You do not want to go through that. One lousy surgery experience does not mean all your others will be. It sounds like your previous nsg may not have had as much experience as he should have. It's not uncommon to see more than one nsg before finding one you like and trust. Just don't give up!

LIZARD

[Liam1983]

Hey. If u really want to know, Ive had Hydro all my life, was diagnosed as having it at the age of 20, but didnt get a shunt put in for a few months after it had been discovered.
Constant tiredness, always sleeping hen I wasnt working, Id fall asleep wherever and whenever I rested my head.
Obviously I had no life as I was always too tired to do anything. Peopel were always on at me.
I had a very weak bladder, if I was on the street Id wet myself before making it to the toilet, even when I was at home sometimes. Also sometimes I didnt want to get up to go toilet so Id wait until it was nearly too late.
When things got worse I had constant dizziness everytime I got up and walked. I had to hold onto a lampost to regain balance, or even just sit on the street because I felt too tired to walk.
Because I had to wait so long for the op Im now partially sighted.

However now Im treated, Im on my 2nd shunt already as the 1st 1 like ur didnt work, and Im living every day to the full as I can whereas I couldnt before, and Im loving it.
I do sometimes think Id rather be dead than have to worry about my shunt and Hydro, I worry about it everyday and get over-paranoid, but as long as Im alive Im going to keep living and will accept any treatment the specialists offer. I think you should do the same.
Get treated and then live, living with untreated Hydro was the worst thing and most embarrasing thing ever and I really didnt care if I died in the operating theatre or not I was that bad.
Sorry for the long reply but I want to make it clear how much difference it makes having a working shunt put in.

[Nat Hyland]

Unfortunately the only option for treating a blocked shunt is surgery. I know it is a nuisance, and no one really "likes" it, but it is a necessity if you want a chance to live ! It is definitely possible to die from blocked shunt, as I nearly did 8 years ago. I actually went into a coma before I was taken to the operating theatre (I was already in the hospital's emergency dept).

I know it is difficult - I have had two surgeries within 8 months, and two surgeries within 11 months on two different occasions, having had 6 replacements in all. I have now had my current shunt just over 7 years !

It is a matter of just plugging on, and eventually things will settle down.

Good luck!

Nat.

[jeff179120]

Originally Posted by BabyGyrl

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.

Hi, I wasn't diagnosed with hydrocephalus until age 41, (12 years ago). I have now been told my hydrocephalus is worsening, but a shunt revision or even a valve replacement (I have a fixed pressure valve not a programmable one) is impossible. Basically, my hydrocephalus has been "untreated" since 1996. The only thing they do for me is provide a mild benzodiazapam to keep me calm and prevent seizures. I used to treat headaches with narcotic pain relievers, but doctors have now taken them away because others in town are selling them on the street. But on the bright side, I'm able to function, albeit slowly, I need a walker to walk or a cane indoors, and while I know things are going to get worse, I just try to keep the mind moving with card games, etc. That was the advice the doctor gave me. I really don't want another surgery either, so I just cope with the challenges with support from my girlfriend, who prepares meals and helps me with shopping etc. Jeff,