Long overdue update.

Turns out that, on angiography, I do have a bit of a cobweb of dural AV fistulae, branching to and fro roughly from the right oropharynx to the back of the ole brain. Did the first embo in Jan. Was a good 6h in the attempt to gain enough arterial access (the anatomy of my medial meningeal artery, which is often more ideal for access to fistulae of this, does a kind of 'swoop down' versus an arching path toward the top of my head). That makes this particular entry quite the risk as it's current location very likely abuts a cranial nerve. So all we got out of that 6 hours (and a helluva post op headache) was a roughtly a middle third of the fistulae embolized, leaving 2 remaining segments, one toward the region where my right frontal sinuses would be (I"m a 5%'er - born w/out them 0 I'm not terribly worried about this one).

Good news after that procedure is that the PT was taken care of, and some of my focal issues, headaches, and nausea improved to a large degree.

In a second procedure in March, we decided to try and use a venous approach to coil embolize the more posterior junk that is more of the concern here. The reason is to stabilize the thrombosis in the transverse sinus and keep it from creeping toward the superior sagittal sinus (that outcome wouldn't be a cause for celebration). My neurovascular doc was kinda disappointed with it as the coils didn't appear to seal up blood flow from the fistulae located there as much as he had hoped.

Good news there is, at least I was symptomatically stable and we'd just have to wait and see if the posterior fistulae would just shrivel up and go poof. So we've taken a break from surgery, thankfully. A couple of weeks ago I was cleared to start jiu jitsu again, within reason (given I only have left side dominant drainage now - and the thrombosis is here to stay - I don't really have any redundancy in case I were to get caught in a choke - so tapping out before we really get there is the right answer).

We're resuming appts at the end of Aug, Another diagnostic angio soon to follow and see what next steps look like.

Today has been a bit messy as I've been having a bit of a 'brain zap-a-thon', followed by some dizziness (kinda prompted me to update my post in the hopes something in it may be useful to someone else). I've restarted Diamox - still remain on the Eliquis. Remaining hydrated, continuing exercise - may take a day off jiu jitsu tomorrow if I feel like today. Keeping a close eye on it and gave the fam a little heads up in case they see me in a rather absurd stated. Will see what new and interesting adventures tomorrow brings.

More to come - you all take care of yourselves and each other.