AVM Survivors Network

Hydrocephalus w/AVM

I have attached the link to my blog,

I am struggling with the effects of my AVM pushing on my brain stem. It has started to cause Hydrocephalus. Anyone has a similar experience? I would love to hear how it is going.


I haven’t had hydrocephalus, PKP, but I’ve had edema of the brain. It’s fairly common after stereotactic radiation, and it’s no fun.
I read your blog, and what we have here is what’s missing when you first hear of an AVM (typically it’s your AVM) - a sense of community. :slight_smile:

thanks… And yes, community and a commonality help to not feel as isolated. I visited this site last year when I was initially diagnosed, but was still very much still processing the road ahead. It has taken a few twists.

Sometimes posting a discussion is effective, and sometimes reading prior posts helps. I used the search bar in the upper right corner and typed hydrocephalus, and came up with 17 pages worth of reading. I hope it helps. :slight_smile: