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Where can I find out what the average life expectancy for patients with hydrocephalus is? I imagine that life expectancy must be greatly impacted by hydrocephalus. Would that be a correct assumption? I know stories about people born with "water on the brain", and always thought they did not live for very long and that there was no treatment, but apparently hydrocephalus can be treated. After knowing that, I am now looking for more information about the condition.

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If someone was born with congenital hydrocephalus and it was treated right after birth, with the implantation of a shunt, life expectancy is within the "normal" range. That is, also dependant on if the person who has hydrocephalus is aware of the symptoms and seeks out a neurosurgeon... when needed. However, if you have "acquired" hydrocephalus, your life expectancy may be decreased. Also, people with NPH or "normal pressure hydrocephalus" can have a decreased life expectancy. For instance, former Rep. Gabrielle Giffords (D-AZ) has acquired hydrocephalus, due to the trauma of getting shot in the head. Her life expectancy may be decreaded by that. How long is anyone's guess.

 

You have to remember, congenital hydrocephalus is quite complex. Most of the time, the deaths in early childhood, may be due to the infant not able to tell people what is wrong, a neurosurgeon draining too much or too little CSF (cerebrospinal fluid) can cause a systemic breakdown that tiny bodies don't know how to handle and they have a "cascade failure" with the heart and brain stopping. But, that is a *worst case* scenerio.

 

I was shunted at one month. Have had numerous operations. Was told I would not live past age 16, I'm now in my 50's. Living near a "teaching hospital" is a good idea. They teach the newest skills. Yet, having staff that follows you for 20+ yrs is also a plus;-) Hope that info helps.

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My son is 20 going on 21 next month and has hydrocephalus he has in a shunt since three months old
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If the person who is the writing this about being in the 50s with shunt please, my son had one and many other med problems, i really would love to talk to you, since my son is deaf and cant tell me how it feels etc...please contact me.. Fb.. Jennifer parenteau. Thanks
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My brother had a shunt pretty much from birth. He is now 38 years old and going strong. He has some other medical issues as a result of the hydrocephalus but all in all he is happy and well.
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I've had 10 shunt operations (6 before age 2 , 7th one was when I was 2 weeks before I was 14 & the 8th one was in 2013. ) With the last one, it was a VP shunt & I needed the bottom half replaced twice ( once in 2013 & once early this year)
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Re: my last post.. I'm 46 years old
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50 plus years is an encouragement to me. My daughter is 4yrs with vp shunt inserted at 8 months old. Please let me know how i can handle seizures as we undertake this journey. Regards. 

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I am 43 years old got diagnosed at age 39. I have had four vp shunts myself since 2011. They clog up with protein or drain tube clogged up. I have also got a couple of infections in mine.
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It's good to hear that many people have a long life expectancy with hydrocephalus. My friend has cognital hydrocephalus and is 27 and doing well. I do worry about something going wrong with his shunt or them having to replace it again or something, but he is otherwise ok.
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Hi read yOur story I myself have had 12 operations though mine started at 5 months of age mom claimed I was one of the first hearing that your past 50 makes me think more my life is left.
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I am 43 and have been shunted since not long after being born. That shunt failed when I was 5 so they installed another shunt adjacent to the original, which could not be removed due to risk to the brain tissue that had grown around it. At 23 years old [20 yrs ago] the catheter in my neck deteriorated and the CSF couldn't drain. Massive headache, vomiting, bkackouts...the fix was to do a then-new ventricular bybass procedure, which my surgeon explained to me as having a 50-50 chance of succeeding. Those were better odds than I was facing with no surgical intervention and obviously it worked. Both shunts and the still deteriorating catheter are still in my head and neck. They both cause me pain and discomfort. I'm having trouble finding a surgery that will take the catheter. That and the entire medical insurance landscape has changed since 1996. I am curious, due to to the complications that I've had, is my own life expectancy shortened?
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dear "43"...I have a 6 almost 7 yr old with a vp and lumbar shunt. She has been through hell and back. Used up all the spots in her head. Has Slit ventricle Syndrome now. She is the toughest case they've seen at the Children's hospital. She developed an infection in her line and had to have the whole thing removed and lie on her back for 2 weeks at a 30 degree angle with an external put in till she healed enough to replace the shunt. She has had many skin erosions that has exposed the shunt valve or line...even coming home from having it replaced to go right back an hour later to have it replaced again. one time she had a broviac that went from her heart over her shoulder and out her back and they still placed the shunt line right beside it. i can go on and on...and still the Neuro team said that she can still live just as long as anyone else. Though i feel you should still be looking for that Neruo surgeon who will take your case. Doesn't sound right or fair. Makes no sense when I've seen what they have done to my little one. We have traveled to other hospitals in other cities to get the help we need. Gotta be a strong advocator and dont give up. Wishing you all the best
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I m 48 years old I have two shunts. And I be had 30 shunt surges. I feel very lucky
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I haven t ever had to have the bottom half replaced but since I have two shunts they had to put a balloon in between third and fourth ventricles in brain so shunts would work together
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