Anybody on here got a DAVF I had one diagnosed in 2011, its was decided eventually to treat it conservatively, but as time goes on i have all kinds of weird symptoms around my head, dont know if this is normal still have my pulsatile tinnitus , and weird head pains. Any suggestions greatly appreciated
What part of the world do you live in?
Hi, @tinysilky
I had a DAVF and had it embolised. It’s fair to say that, even after embolisation, my head felt weird for a long time. And it was very weird pre-op.
Have you had any treatment for it, or do you mean by “conservative” that you’ve left it alone? Have you had any recent appointments with the doc about it? I know it was rated as a Cognard 2a a couple of years ago but have you had any further assessments to see if it still counts as 2a?
I do think that any AVM, left untreated, is likely to grow in its influence and I can say that I felt mine was changing month by month at the point that I had my embo.
Sending you my very best wishes!
Richard
@tacos4life, Tiny is in the UK.
It wouldn’t hurt to get a second opinion if you can. You might not have to live with these symptoms.
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Hello @tinysilky I have a DAVF on my left side and have had one embolism so far - I still have head pain like a constant pain as if someone has pulled my hair hard and it itches frequently. After the first embolism the whooshing sound went away and they did go back in a second time but some how my body had sealed some of the arteries and veins by itself and what is left my doctor is afraid to touch as it may cause paralysis. so we are in watch mode. Mine was created after a rare stroke called CVST, I did try occipital nerve blocks which did help the pain but now I am allergic to meds.
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