Hey Taco! (love the label!)
I’ve got a Dural arteriovenous fistula, too. I’m older than you (50+) and I had similar things going on.
You do need to find a neurosurgeon with experience of neurovascular stuff and/or an interventional radiologist. Between them they should be able to recommend what to do in your case.
Whilst this is a rare condition, I get the impression that DAVFs are quite well known. Your symptoms (especially the pulsatile tinnitus = the heartbeat sound) is classic.
I took a year to go from primary care to embolisation and felt I was going downhill rapidly enough, thanks. My embolisation definitely fixed much of it but I currently have a good degree of tinnitus, fullness of my left ear, possibly a bit of the pulsatile t back and what feels like pressure in the old noggin so I’m going back again this week for an outpatient consultation. We’ll see if more needs doing.
All of this is eminently survivable and, depending on how big a thing you’ve got going on, I dont see any reason why you cant go back to normal afterwards. Obviously, there are scales of impact, so you need to get a professional opinion on your case and move from there.
Id say keep exercising but go light. The big big thing is to keep your blood pressure at normal – not raised. Cut out coffee, smoking, alcohol, anything that is a stimulant if you can. But doing some exercise is undoubtedly important. No straining, pushing hard. Perhaps no endurance stuff. Go v easy.
Welcome to the site. It good to do something and its great you’re here!
My story…
up to September just gone, if helpful.
Very best wishes,
Richard