Round 4 in the books

Darn! Like you say, looks like no way to avoid round 4.

My DAVF was never classified but I was definitely getting plenty of reflux, so I felt very much in the same position as you, e.g. somewhere around IIa+b or IIb. By contrast, mine looked very discrete on MRI, looking like a very direct shunt into my right transverse sinus. The consequence of that very direct quite discrete shunt, I had blood going in all sorts of directions.

It felt to me as though it was developing quite quickly, so Sep 2015 I had the faintest pulsatile tinnitus. July 2016, I managed to record the bruit by pressing the microphone of my mobile phone to the site on the back of my head. By the autumn, I was getting dizzy. Through the winter and early spring, I was getting much more dizzy – lying in bed at night almost made the room spin round and the pulsatile tinnitus was like having the washing machine on pump-out every second. Gorgeous!

The MRI was taken in Sep 2016; I don’t know how extensive it was by my embolisation in April 2017 but I assume it was less discrete. The doc said he “used lots of glue!” including filling some emissary veins on the outside of my head (I believe).

So I feel you and I hope it may be helpful to lay out what I can about my development.

Can you outrun the thing? Who knows, tbh. I do tend to think of part-embolisations as being liable to make the situation worse rather than better. There’s a bunch of pressure on the arterial side trying to reach anywhere, including running the short-cut through your DAVF/AVM. Why closing off part of it would reduce the pressure in the remaining areas, I don’t understand. Having reduced the escape routes, it feels to me as though the pressure on the remaining venous connections could increase. So in my mind, it makes sense to crack on with closing it all off.

You rather indicate that it’s never going to get fully shut down. Do how do you win that race? Honestly, who knows? It’s going to depend on what’s left to continue to make itself known.

Do you have a lifetime of embolisations in front of you? Quite possibly. Will they do some good? Take the views of the doctor each time. We did have a fantastic member here who passed away, not due to his AVM, last August. Tom was 57 and had recently had his 18th or 19th embolisation/surgery, having had his first in about 1978 (I think). His AVM was in his neck but made its way north into his head over those ~35 years. I don’t think his AVM was “small” at all and being in his neck, chest, shoulder was constantly being flexed. He was a wonderful man and I wholly value having shared the last 6 years of his life through this forum. Even while he was rather poorly in the latter of those years, he was a light to many of us here. Tom would highly recommend Dr Giuseppe Lanzino at Mayo Minnesota. They definitely worked constructively together on trying to best manage Tom’s AVM over a long time.

These are more than enough thoughts for me to share for the moment! Hope something might help.

Very best wishes,

Richard