Welcome again! In general, I over-share so I’m happy to talk about me!
My AVM was in the dura mater layer of the meninges. I don’t know which artery was involved but it was a straight shunt of blood into my right transverse sinus one single connection but high flow, apparently. The effects of it were that I could hear the whoosh, whoosh of the blood surging into my transverse sinus and actually going both left and right past both ears. Over time, it started to make me increasingly dizzy and a very odd feelings in my head when I was moving, e.g. walking or being driven. It was also inflating a bunch of veins on the outside of my head (there are some holes in the skull in a number of places and I think the pressure inside was enough to create a pulse on the outside of the back of my head, enough that I could press down on it and it was strong enough to lift my fingers. It was very worrying).
I managed to self-diagnose using Dr Google and frightened myself crazy. A stroke?!
I had an embolisation (= glue) to block it up in April 2017 about a year after self-diagnosing.
I think the weirdness that I felt post op was that suddenly, the pressures in my head had changed: places that had been a bit lower pressure than they should have been were suddenly up to pressure and places that weren’t supposed to be pressured had suddenly lost that pressure. Blood that was supposed to flow one way had been flowing in multiple directions was suddenly going where it should. Now, you’d think that was all good but it was very, very weird. Plus, I could hear a loud pulse which worried me for a while as well.
Overall, I felt quite unusual for several months.
In the September, I started at the gym and I don’t know if it was too much but despite feeling initially very good at getting back to exercise, I had several days of significant dizziness again, enough to go back to the GP and say “I’m worried I’m going backwards, not forwards”.
Long story short, I got referred to neurosurgery again, they did a couple of MRIs and an angiogram and said “Can’t see anything amiss. You just need to get used to the new pressures in your head.” That took until the September the following year to get that answer. I didn’t quite feel like everything was ok but I resolved that the best thing to do was to believe the doc: he seemed genuine and all that: so I set myself to just believe I was ok. If I had twinges, ok, they were just twinges. If I felt significantly poorly, then I’d ask for help again.
Honestly, I’ve had minor things since then: odd sensations: but nothing that feels like a stroke, so I’ve put it all behind me. It took about 2 years to settle into everything being ok.
As a non-bleed person, it feels trivial what I’ve gone through compared to someone like you but on the other hand, I think we all recognise the trauma of worry and that’s not at all easy. It is a most insidious thing.
Recovery is long and it isn’t a straight line. Take your time and believe in yourself. I am sure you’ll get there.
Hope something here helps. Always feel able to ask anything you want.