Hey @DWobbleton, welcome to the group. I’m not going to proclaim myself the king of watching and waiting but…
I watched and waited from 1979 to 1986
I watched and waited from 1987 to 2009
I watched and waited from 2010 to 2018
How often did we get an MRI - every couple of years unless we had a reason to (something that looked, felt or sounded like it changed). Mine was/is left shoulder-neck for most of that time and has since spread upward into my brain, thus the major Embolization in January of 2018.
I had annual physicals and if needed or suspected, we would move up to a specialist, radiologist, Neuro etc. I have 11 clips in my neck from the 1978 treatment so between that and the coils now, my MRI days are probably pretty limited.
What things did/do I limit? Anything extremely cardio - getting your pulse up puts pressure on your blood vessels and could possibly maybe but it’s never been proven, enhance growth of an AVM. Since mine was in my left neck and shoulder, anything but recreational biking wouldn’t work. Snow shoveling, heavy lifting, basically anything that would make you “grunt” while doing it is probably better to avoid doing too much of it.
Now keep in mind, none of this has, I believe, been proven in research trials or anything like that. For me it’s been kind of a “back into it” type of thing. For an AVM to grow, the blood vessels have to grow and expand somehow. If your blood pressure is lower, if you don’t do things that make it go way up, that probably will help rather than hurt. Does that make sense?
You know, the way I see it, if I live life longer and more symptom free by walking my dog rather than running a half marathon, I’m okay with that. If it gives me an excuse to by a snowblower rather than a shovel, I’m okay with that.
And I’ve probably rambled more than I need to. Hope this helps and know you are not alone.