Been quite some time since I posted, but my fight in the war continues. I have been in quite the fight. Many wounds but still in the game. After the 4th one I suffered 2 significant scalp wounds from radiation that required professional wound care. Luckily those ultimately healed for the most part & my hair grew back. After this my interventionalist was at a lecture in Columbus and referred me to Dr. Daniel Sahlein in Indy. They discussed my case & Dr. Sahlein felt he could cure it. This was music to my ears as it had been previously deemed incurable. He came out of NYU and uses targeted selection via transvenous approach. I also found out at St. Vincent they have top of the line Siemens equipment that can 3D model the fistula as well as lower radiation levels. So, I had my cerebral angiogram under general anesthesia in Oct 2023. I have what is considered a multi hole (4 of them) DAVF.
I have had 4 more embo’s in 2024. One in March, April, July and most recently Dec. 2nd. This last one was supposed to be the cure. However, darn thing is so aggressive a recanalization occurred and had to attend to that. Was still able to make some more positive progress from the last one. The fistula is down to 2 small arterial sources with 2 remaining transverse sinus venous pouches. My tinnitus has been essentially eliminated since #7 and the flow is much more antegrade. I have #9 upcoming on Jan 27. I have dropped my expectations around the next one will be the cure. And, just will continue to take it one at a time.
In the course of all of this I am now on blood thinner for life as I have clotted post op a couple of times in calf and once in forearm. I still have low grade (1 to 2) Papilledema in my eyes with the right being worse. Not sure if this will ever resolve or not as I have one permanently occluded sinus that can never be restored. I have had a couple real nasty post op hematomas. They used wound closure devices on both my groin sites this last one. Both closures looked excellent post op! Got a little nervous on this last one as one of the balloons caused some post op nerve palsy in my left eye which had me seeing faint 2x vision in that eye. Has since resolved. Again, thankful.
I am definitely not one for attention. I feel obligated to share my journey in the hopes of helping anyone else down their own personal journey.