My DAVF was in the Dura mater layer “over” my occipital lobe. As far as I can tell kind of half way along my right transverse sinus. I also had a clot or diminution of my right transverse sinus. The saggital sinus splits mid point on the back of your head into the transverse sinuses and then they become the sigmoid sinuses, going past your ears. So far as I can tell, there is also the straight sinus which flows to the join of the saggital sinus and TVS, so there’s a big “confluence” of flow at the back of your head.
My DAVF was, therefore flowing into my right transverse sinus, struggling to get past the diminution to the right and the sound of the excess flow was playing into both ears. Very quiet at first (Sep or Oct 2015) and only audible at night, on the pillow, a “whoosh” rather than a normal pulsar “thump” or “thump-thump”; noisier by Mar or Apr 2016 such that I was definitely suspicious that something must be awry. I managed to record the whoosh by pressing my mobile phone microphone to the back of my head in July '16 and saw an ENT consultant who identified an AVM at the end of August 2016. By this stage, I could feel veins being inflated every second on the back of the (outside of) my head. Strong enough to lift my fingers when pressed!
Through the autumn, I gained a dizziness (and I think due to the blood playing into the straight sinus, back towards my cerebellum) and the level of flow increased month by month. By January 2017 I was finding myself dizzy when lying flat in bed and resorted to sleeping more propped up on several pillows. I say “sleeping” in its broadest definition!
I was able to get an embolization at the beginning of April 2017. After the embolization, as I say, the change in blood flow was so significant, I gained a loud (normal) pulse in my left ear. That has subsided and the dizziness has got better (noticeably post op, but otherwise has faded rather than stopped suddenly).
I didn’t quite feel everything was working towards “fully fixed” through Oct, Nov last year and went back for a check up which effectively took all year.
I do think a big change in flow is difficult to feel “ok” about but I did get better, very gradually, over 2018. I still have the left ear pulse, a bit of fullness in my left ear, some (normal) tinnitus; my head feels odd on top when moving – not dizzy but not what it used to be. But I can’t get the docs to worry about any of those and the conclusion of my scans is “nothing we can see” so I’m being a good patient and have stopped shouting “wolf!?”
My consultant interventional radiologist was very clear that he was looking to fix the flow from whatever artery into my transverse sinus (and thereby bring my stroke risk back to a normal range for a man of my age) and he couldn’t say / wouldn’t predict what consequences for the pulsatile tinnitus would be. He also tried to open the diminution and he glued up what feels to me like a decent size of exterior veins on the outside of my skull, maybe 2cm across and 3-4cm high area on the outside of my head was being inflated by the DAVF outside my head. I know the actual AVF appeared pretty small on MRI in autumn 2016 but I don’t know how extensive its effect was by the time of the operation.
I don’t think my neurosurgery doctors were expecting me to decline as I did, so I think it was at least a little unusual. I also believe my DAVF was probably acquired, rather than a normal in-brain AVM which I think is more often considered congenital. So that your husband’s AVM is changing a little may not mean he is on the same downward slope as I followed.
Hope this helps.