Recent DAVF endovascular coil recipient

Types of Avm's Brain DAVF
1

I'm the winner of 29 platinum coils endovascularly inserted in my dura- I feel like I just won the Showcase Showdown! On the serious side, I hope my insurance picks up most of the tab- that is to be determined..

I had a small bleed on the 4th of July which resulted in being placed in the Emory Neuro ICI, and testing, which resulted in the coil insertion, then was released and have been feeling great since. I am a very active 42 yr old male and am at what doctors would consider to be a healthy weight and have a healthy lifestyle. Also I have no family history of hypertension.

The problem is that I have had hypertension for the past 8 years, and have been on various BP meds with varying degrees of success at regulating my BP. I went so far as to make it my new years resolution this year to figure out the underlying cause. I had heart tests, I had kidney tests, full blood workup...the various specialists couldn't find anything out of the ordinary...

Well, I am fully aware of the old adage "be careful what you wish for, because it may come true" and am wondering if this AV fistula could have been causing my elevated BP for all of these years? I've been testing it daily since the procedure, and it is in normal range, but that could be due to the anti seizure meds they put me on.

Does anybody have any experience with this? I've scoured the internet, but couldn't find any information. In summary, I am trying to figure out if a non treated DAVF could have been the underlying cause of elevated blood pressure, and if successful treatment would result in BP going back to the normal range.

Thanks in advance for your thoughts

2

Well. I have had 45 Platinum coils packed into my DAVF on June 26th. Good luck with your full recovery. As it relates to BP, I doubt that it is related to the fistula. I have had high BP for about 8 years as well which is managed by BP medication. No family history.

3

Wow well I think you both won. I had 30 feeders but my dr used glue and onyx . I still have 1 they can’t reach . My dr at Stanford said that DAVF are rare and that he sees only about 12 cases a year from all over - mine was from a CVST ( 5 blood clots in my brain and a rare stroke) later the pressure blew out my left sigmoid vein and DAVF grew . I always had low bp but it was normal range at the time but I was in terrible pain due to the blood clots
I was 43 otherwise healthy before the stroke.
I do have something genetic called Ehlers Danlos and have seen more people on that support site with DAVFs then on here, which I have told my drs but they don’t seem to care