AVM Survivors Network

Midbrain damage


Hi Everyone,

Has anyone had experience with brainstem damage. In particular the midbrain?



I have, after a bleed 4 years ago. Would be happy to talk.


Could you please tell me a bit more about what you went through?


I didn’t end up in a coma and was only in the icu for a week after my hemorrhagic stroke so I may not be the most relevant example. I am so sorry to hear about your sister. I have long term deficits with double vision, right sided weakness, tremors, memory issues and fatigue as the most prevalent but nothing compared to how much worse things could have been.

If you want to talk more I am also willing to have a phone call. I also had a friend with a stroke who was in a coma like state for weeks and she is also in a similar recovery pattern as I am.




I had an AVM bleed in my thalamus about 19 years ago. AVM was fixed by two shots of gamma knife.


Hi Martin,

Im so glad to hear you’re okay. Could you tell me what you went through after your bleed?