I think your experience is the nearest I’ve read to my experience on here.
I had a DAVF which developed pretty slowly at first: I had some pulsatile tinnitus that was very faint at first and as it got louder, I did more concerted Googling until I found an article on the American Stroke Association website that described AVMs, pulsatile tinnitus, bruit and DAVFs and had my first OMG! moment.
It was an ENT doctor I saw who said “You have what we call an arteriovenous malformation. I’m going to send you for an urgent MRI” but it took a whole month for that MRI to happen and a further month for the report to get back to him. I discovered this website just before the MRI and it took several months to be referred to neurosurgery and in fact took a whole year from my first OMG! moment to embolization, so I feel I had a lot longer to read, understand, frighten myself somewhat and yet also rationalise about the need for an op etc.
In the same way as you, the conclusion of the investigations was a DAVF adjacent to a “diminution” of one of my transverse sinuses. I’m not sure whether that was through some kind of build up or just a narrowing for some other reason but yes, that was present at the site. I was treated with PHIL glue (no coils) but my consultant said he thought he’d blocked it off in one go “I used a lot of glue!”
Equally like you, post op I didn’t feel fixed. I’ll have to link you to my story as I’ll remember some things inaccurately these days but basically I had a very loud pulse in my ear post op – it sounded like a proper pulse, not the whoosh whoosh of PT, but I was very perturbed by that. Here’s the link: My Update - Dural AVF Embolization - #22 by DickD
At the 7 or 8 week rescan I was hoping they’d find a little something that needed fixing because I didn’t feel right at all. A decent amount of dizziness and oddness remained but the conclusion after that scan was “Nothing found. Just resume life as normal.”
I did as I was told, though I’m not sure I believed. In general, thing went ok but I had a spell of big dizziness about 6 months post op which I had to go back on the waiting list to be seen, had a rescan six months after that and the report six months later still – so, a year after that dizzy spell!! And the conclusion was still “Nothing found. Just get used to the new pressures in your head [and it will fade into the background].”
The truth is that I concurred and allowed myself to believe I was ok, I ignored the noises and the slight weirdness and today, getting on for 8 years post op, I’m absolutely fine. I don’t worry about it, I don’t particularly pay any attention to it and there’s nothing I don’t do in life as a result of it.
From what you say, your initial diagnosis may have been Cognard 2a but it sounds much more 2a+b by the time you finished. I was never told a Cognard assessment but I’m pretty sure I was 2a+b. I had dizziness principally and a loud whoosh whoosh pulsatile tinnitus that was incredibly loud by the end. I didn’t have the regular tinnitus whistles and screeches that you describe, though I’ve had a jet engine whistle for decades that’s not overly loud but emanates from a night in a club maybe 20+ years ago.
Welcome to the site! It’s great to have you join us and I hope we can help you to rationalise, get a bit more ok with needing that next angiogram and be with you asking the way.
Very best wishes,
Richard