IamA 31 year old female with Hydrocephalus. I have had 19 brain surgeries so far and have a valve in my head that controls the flow rate of my spinal fluid. AMA!
My short bio:
I was born with a condition called Hydrocephalus (commonly known as "water on the brain") where spinal fluid builds up in the ventricles of the brain. I have a ventriculoperitoneal (VP) programmable shunt to re-route the excess fluid to organ tissue in my abdomen to be reabsorbed naturally. The "programmable" part is a valve in my head (outside of my skull, but under the skin) that can change the flow rate of my spinal fluid using magnets and without invasive surgery. However, my valve is stuck so the next time something goes wrong, I will need surgery again.
I have had this since birth and, due to complications, I have had 19 brain surgeries to date. There will likely be more in the future, but so far I have been surgery free for 5 years.
I wanted to do this AMA to raise awareness for Hydrocephalus. Hydrocephalus is a common birth defect, but hardly is talked about and does not get the funding for research that it truly needs. 1 in 500 to 1 in 1000 births result in Hydrocephalus; that's as common as down syndrome. Despite being a condition that has been acknowledged since 2500 BC, there was no treatment until 1952 AD. People often died of untreated hydrocephalus. Very few advancements have been made since the 1950s.
If you want to find out more, either ask me here or check out the Hydrocephalus Association; it is a great resource.
My proof: Proof was submitted privately, but here's a picture I will share of my shunt being adjusted!
Edit: Wow! I stepped a way for an hour and came back to a flood of wonderful questions! I just grabbed a beer and some pizza and will try to answer each and every one of these. Keep them coming!
Edit 2: This blew up so much! Thank you all for your questions. I'm going to try to keep answering them all but I definitely need a break.
In the meantime, here are some great resources to find out more about Hydrocephalus:
Edit 3: Wow! This blew up bigger than I could have imagined! Thank you so much, everyone. I have a party to go to, so I'm out for the night. I'll try to answer people's questions and PMs and such over the next few days, but there's a lot of them. Sorry if I don't get to yours.
Edit 4: I just want to remind everyone that I'm not a medical professional; just a professional patient. Please keep in mind that my answers are about my experiences and should not be taken over the advice of your neurosurgeon.
To those of you asking about drinking water: When your brain is in distress, your body begins to dump sodium to protect it. If your sodium levels get too low, it's life threatening. To combat that, often doctors will prescribe salt pills and limit water intake. However, if your shunt is working fine, your brain isn't in distress and it's a moot point. Do not alter your water intake because of something you saw here, follow your neurosurgeon's advice. For me, I just hate the taste.
Thank you, everyone, for your responses.