Although I presented symptoms for many many years I wasn’t official diagnosed with an extracranial AVM until a few years ago. I had a small pulsating mass on the right side of my head - right at the hairline. After many tests, I ended up having surgery at Emory hospital in Atlanta, Ga in July 2019 due to the constant pain and debilitating headaches. Unfortunately, it has come back and is now a little lower that the original spot it was in. Again I am experiencing shooting pains and headaches. I know how uncommon they are and can find little to no information on extracranial AVMs. If anyone has any advice or knowledge regarding my situation, I would be grateful if you wouldn’t mind sharing.
Thank you in advance,
Elizabeth
Hello! I don’t know how similar my situation is to yours (and I’m not sure what I can tell you about these things) but I had a dural arteriovenous fistula which was pumping into my right transverse sinus (so, all inside the skull) but I was getting inflation of the veins in the outside of my skull in about the same place, so back of head, right hand side, reaching down towards my neck.
The conclusion I came to myself was that the DAVF was back inflating some of the smaller veins that would normally drain into the transverse sinus, due to the pressure of the flow into the TVS from the artery. It was very uncomfortable and seemed to be getting noticeably worse over time. I had an embolization in April 2017 and have been “back to normal” since then.
Now, I know that you’ve got an extracranial AVM but you’re saying that it is giving you headaches, so is it doing something like the opposite of mine and pushing a bit of high pressure back inside somewhere? I can imagine an extracranial AVM being really quite uncomfortable
Thank you so much for your response. I’ve been dealing with this for a long time and it is becoming a very large hindrance in my life. Any information anyone may have is a blessing, so thank you
