CNS Vasculitis

[katuf]

Following

I had an unruptured brain aneurysm clipped 5 years ago. Things went well till 2 years ago. I have brain inflammation at the gauzed wrapped site where the clips are. The inflammation cause pressure on my optic nerve which in turn caused me to start loosing my vision. I live in Pittsburgh pa. They have great neuro surgeon and even neuro ophthalmologist. No one had ever seen this before .I was started on 1000 mg of steroids. It started to reduce inflammation but it was 2 years before I was totally weaned off the pred. I now also have the belly bloat. It is awful and uncomfortable. I would love to find out why. Thanks for listening. Kat

[vivdunstan Volunteer]

Hi Kat, You mentioned steroids but have you been on any other immunosuppressive or chemotherapy drugs to treat the vasculitis? Because normally steroids alone wouldn't be the usual treatment for CNS/cerebral vasculitis.

Sympathies anyway. I have the same form of vasculitis, and have been living with it for 23 years. Yesterday I "celebrated" my 20th anniversary since diagnosis. My story is online at

vasculitis.org.uk/living-wi...