Hi Sue
I think its very important to understand everyone's perspective with AVMs. Without question, always be guided by a Neurologist. It's their job and they know the specific case. Groups like this, by definition, offer advice from personal experience. Our expertise only relates to our own particular case and experiences, but the fact is in the quest for understanding we all like to know what others with the same condition have experienced.
In 'My Story' blog I stress to treat all internet info with care, but my experience is that doctors don't always tell you everything. When I was first diagnosed all I was told was to not do any heavy lifting. It was only when I looked into it myself and went back with further questions, that I was then given a more comprehensive list of 'don'ts'- it was assumed I would know, but as we know at the start we don't know. My list then became; no strenuous sex, take it easy on the toilet, no exercise except swimming or walking, don't lift anything heavier than a normal suitcase, no theme park rides, etc.
I have lived and studied this for a long time and there is a difference between risk of a bleed and symptoms you may get. Don't quote me exactly but over a life time there is something like an 80% chance that an AVM will bleed, and this isn't connected to whether you get symptoms or not. As I understand it gentle exercise is ok, but anything that is a strain (any activity that makes you red in the face) is bad.
We are merely AVM sufferers - not Neurologists, and you should never take conventional wisdom over medical advice, but conventional wisdom is what this group gives you.
Take care
Marc