Hello! I’m new here and haven’t seen too many people with extra cranial AVMs. I’m very lucky that the only symptoms I’m experiencing is occasional external bleeding if the skin near AVM opens up due to irritation.
I’ve seen two doctors - both of whom I believe to be very good - recommending different courses of action. One is saying I should get an angiogram to confirm it doesn’t extend into the skull and embolization. Another doctor is telling me that I should leave it alone and continue to monitor it until it grows or starts giving me trouble. He seems to think the downside risks of embolization are not worth treating something that isn’t causing much issue yet (even if it has an intra-cranial connection).
Im leaning toward just continuing to monitor and putting off any treatment, but am curious if other have any insight or recommendations.
I also recognize that my AVM is currently very minor and many in this community are facing much more concerning and life altering decisions — my thoughts are with each of you as I read your stories. Thank you.
You’re right: I’ve not seen many of us with an extracranial AVM. I can tell you about mine, which might nudge you one way or the other.
I had what’s called a dural arteriovenous fistula (DAVF), just right of centre of the back of my head. Since it is “dural”, it is intracranial, within the dura mater layer of the meninges. It was pumping blood into my right transverse sinus and I first discovered it because I could hear a faint “whoosh, whoosh” every second, as I laid on my pillow at night. It was not like the usual double thump-thump of a heartbeat, just the squirting sound, once a second.
It got louder over time and it started to bother me. However, I don’t go to the doc easily, so I googled stuff until I basically self-diagnosed, frightened myself stupid and went to the doc.
I had to wait for a referral to hospital (4 months) and then a referral to neurosurgery (7 more months) before I had it embolised.
In the meanwhile, the noise got louder and louder and by about 5 or 6 months of waiting, I was getting dizzy and increasingly poorly. One of the later symptoms was a patch on the outside of my skull, in the same location, where I got very sore veins on the outside of my cranium. Nothing bled but they got quite sore.
So… There’s definitely a connection between inside and outside in that location and in my case the trouble was largely on the inside presenting itself somewhat on the outside. What was happening with me was that I had quite a high flow DAVF that was causing the blood flow in the major sinuses of my head to flow in all directions, including to some vessels on the outside of my head.
I hope this might help. I recognise it might not. And I apologised to the community for having something apparently minor when I arrived, too! What I’d say is that the worry about these things is just not at all minor.
@ali7n Hello and Welcome to the site. So glad you found it and sorry that you have an avm. Personally I would have the angiogram because that it what any avm dr is going to tell you is the way that they can tell what is really going on.
I also like @DickD have a DAVF but on my left side…( wonder twin powers **) and from the MRA scan they knew it was retrograde - making the blood flow backwards - explaining why I would pass out after walking a few steps but once they did the angio it was much more complex than they thought…( and it looked like a spider with 30 legs which I was not too thrilled about )
They ended up using medical glue and onyx on me.
I see you like to play basketball and you also run the risk on getting hit in the head or falling on your head. Its really about risk weighted probability of a bleed-
Its your brain… and your 40s are your prime earning years
the number one dr in the USA is Dr . Michael Lawton who now is in Arizona at Barrow and they do remote consults. He used to be near me at UCSF and is awesome. Maybe third time is the charm?
I would seriously consult with Dr Lawton. Also find out if you can be active like playing basketball and if flying is okay-
Hello!
I also have an Extracranial AVM. It took me years to find someone to properly diagnose me and over those years it did grow in size slightly. I opted to have angiogram done to make sure there was no connection to the brain, but I did not have the embolization. I hope this helps!
-Elizabeth
As an update, I opted to get the angiogram for peace of mind. I found myself very anxious that the AVM could be extending into my skull. Fortunately, this was not the case!
My initial doctor recommended that I have embolization (same day as initial angiogram) and then a later surgery to remove the AVM. Another doctor cautioned me against messing with it too much and doing too many interventions as they can cause more irritation or cause them to spring up in secondary locations. I took the 2nd doctors advice and only had the angiogram done.
Over the past 5 years, I’ve had issues with the AVM getting irritated and bleeding. But it has been under control for the last 2 years. I’m opting to not do any more procedures unless it becomes more of an issue for me. Since it’s outside of my skull, not bleeding, and not a cosmetic concern (on back of head, under hair), I feel good about leaving it alone and hope it continues to grow slowly. The angiogram gave me a lot of peace of mind. .Happy to share my doctor’s info. I’m based in NYC and felt i received very good care.
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