My name is Andrew, I was born with Hydrocephalus, and I am 27 now. I have always had a VP shunt, and in December of 2012 I had an LP shunt put in. I have had a headache for three years, along with seven shunt surgeries. I am hoping to help others with their issues, and find some help for myself as well.

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.

Hi Andrew

My 31 year old daughter was diagnosed with mild hydrocephlaus at the age of eleven. She has had five operations including the original placement of the shunt. Her most recent surgery was done one month ago and I still have not got an answer as to why the surgeon placed the normal pressure valve (Delta 01) AT THE BACK OF HER HEAD as opposed to where the much smaller one was located? Because of that she can not lay flat on her back, not only due to the location but size seems so much bigger than the last. Because surgeons don't want to operate on people with shunts if their tests don't show any anomaly, despite the fact that her headache levels were 9 and she was on morphine three times a day and incapacitated AND had affected her vision. She was scheduled to have the shunt study using the nuclear medicine dye but at Brisbane Royal Women's Hospital (RBWH) suddenly the ink/dye has been banned. However, since the operation (they found the valve was blocked due a back long of the CSF coming back up the tube - it began with abdominal pain) she is still getting headaches pain level 2-3, with more severe ones that come in waves (pain level 6)and can stay for half a day and she loses focus. The neuro we saw yesterday said it can take 6-12 months to settle down, which my daughter felt was a jail sentence. Anyone out there with a shunt at back of head? She also still feels pain at base of brain, but they have ruled out infection. Her other problem was the tubing that tracks at the top of her abdomen is raised - again they said that will settle down. And how do they test ICP?

Hi there,
I am 28, diagnosed at 9 weeks following bacterial meningitis, and I've had 16 surgeries. I have the opposite situation, my shunt WAS at the back of my head and now it's at the front. I suppose I couldn't lay all the way on my back without a pillow, but i've always been a side sleeper, and it never inhibited me from lying on either side. When I was 25 I had a cluster of 8 surgeries, and they took out the one that was in the back on the right and put one in the front on the left. I MUCH preferred it in the back, where I could mostly forget about it. Since the latest surgeries after the switch, I have had EXTREME scalp sensitivity on the whole left side of my head. Some days I can't even comb my hair. The nsg said this was because the closer to the face, the more nerves there are, and because it is SO close to my face it smarts quite a bit. As far as the size, I don't have any clue. I used to have a delta in the back and that seemed much smaller than the strata in the front that I have now. Maybe our heads just need to get used to it? I also had problems with the bottom tubing. It was in fact wrapped around my diaphragm and had to be moved laparascopically, twice, the second time they just trimmed it so it can't reach anything. For someone that has previously had a normal, high-functioning life, 6-12 months DOES seem like a jail sentence. I have had a very slow recovery from this last cluster, and some days I feel so deflated, but other times I feel stronger for having been through all this. People with hydrocephalus can live very different lives than those without. When people say to me, "I don't know how you can put up with all this!" I say, "It's not an option, and it's a small price to pay for being alive." My mom always said that after having meningitis at birth, and being told I wouldn't live, and then being told that I would live but I would be a vegetable, she feels so grateful that ALL I got was hydrocephalus. That helps me keep my struggle in perspective too. Every surgery and every recovery has been different, I think where you could help the most will be to help her keep her spirits up during this time. She's lucky to have a mother who cares so much. I don't think I would've made it through the past couple of years without my family (financially I WOULD NOT have). They have been my rock. Best of luck to your daughter and you!