ennairb, I'm so sorry to here that you're going through this.

I am 24 years old and I was born with Hydrocephalus. I was shunted at 3 days old and have been fortunate enough to only have to undergo 2 revisions. I do get frequent headaches and at times my shunt feels a bit sore along my neck but other than that it's been doing it's job well.

The best advice I can over you is to stay positive and when it comes to doctors NEVER take no for an answer. Most doctors (at least in my experience) have no clue about Hydro.

Feel free to send me a message if you need some advice or you just need someone to talk to as you're going through this process.

Remember although it may feel like it sometimes, you are not alone.