Living with Hydrocephalus: My Story

Same I have dandywalkercyst

Same. You have a whole team of "hydro warriors" (I just made that up) here that have your back 🤗🫶🏼 You are not alone.

I had to have a emergency surgery last Saturday night or Sunday I was to out of it to be able to remember which day. I just finally got discharged from the hospital on Saturday and I’m so happy to be home with my family and my fur baby again.

Same 8 surgeries later, I’m 25

I was born with that condition also, it broke a couple years ago and I had to have surgery in March to replace it and it was quite the surgery

I’m I also have hydrocephalus and it’s difficult for people who don’t know me very well to be able to understand me. I have 3 shunts to drain the fluid off my brain but only 2 of them work anymore. But I just had the main shunt replaced the last week of February I don’t remember the exact date. But for some reason the valve that connects both sections of tubing together went bad. My regular neurosurgeon was unavailable to do the surgery so his partner performed the surgery. But for some reason since this most recent surgery my hair,skin and especially my scalp on my head is very oily and no matter what I try I can’t find anything to help control the excess body oil.

Also have hydrocephalus and it's very difficult for people to understand me

😞😭 I hate dealing with a hydrocephalus. I want to do things that other people can do with no problem. But dealing with this condition is so stressful. My shunt didn’t start bothering me until 2019 of my high school graduation. Every since it start hurting. I been trying to avoid people fighting. Whenever I overthink things I get a headache and its so painful because I can’t do anything about it. But sleep. But my mom told me that I can’t or shouldn’t sleep on my right side and that have to sit-up sleeping. But that will cause a cramp in my neck so sometimes I’ll just go back inlay down in bed and go to sleep.

I was born with hydrocephalus didn’t get detected at birth till I was in kindergarten and have had maybe 8-9 surgeries thru out my life vp shunt snaps, last time It happened I use to live with my oldest brother I was walking home from Bart blacked out went thru 3 doors I don’t remember opening the gate

Me too, it’s hard to determine sometimes why you have a headache. And it’s frustrating to see other people do things you can’t do because of it.

ME too. How have you been able to deal with it?