Keira,
Welcome! As Scott says, it’s fine to jump into the conversation, especially as you have a DAVF. If you had some other AVM, it might be better to join a different conversation but Scott & I are DAVFers.
Size is not necessarily the thing as far as a DAVF is concerned and it is the Cognard classification that I think is used to judge DAVFs and whether they really ought to be operated on. I’ve put a link to that in the AVM 101 section just now.
If we measure your AVM by the Spetzler Martin scale it is borderline small to medium but that in itself is only a part indicator. From what you’re describing it does sound like it needs a proper look at and then a recommendation from the doc as to “needs sorting?” or “ok to leave?”. Based on the Cognard scale, some can be left alone.
All four of us in this conversation are in the UK and I expect that progress will be pro rata to
- Recognition of an AVM or DAVF. You’re past that point, so good.
- Determination of risk. This is the Cognard classification bit. Basically, if your DAVF is pumping into veins such that you’ve got a bit of opposite flow going on (“reflux”) it needs sorting out. I would say my DAVF changed over time and only at the point it was clear that it was getting more risky did I get to the front of the queue. It took me ages.
My story is here (there’s a link back to the earlier waiting-for-diagnosis part): My Update - Dural AVF Embolization.
Hope this helps,
Richard