I’ve had a few doctors, with different ideas of what might be going on, unsure if the scalp AVM is connected to the vascular system in my brain or if it’s just a scalp AVM. The doctor who said it’s likely just scalp AVM said it could possibly be treated by a dermatologist, and the doctor who made the initial diagnosis (who is considered one of the best in the field) said any kind of surgery or treatment would be too risky. (And I had another doctor who just never got back to me at all, about anything; just ran some MRI and MRA, with no follow up). Does anyone know anything about scalp AVM? I haven’t found much information online/ the peer reviewed articles/research I do find often seems to contradict other peer reviewed articles/ research. Does anyone have any info about scalp AVM?
Welcome! I hope you’re able to get some answers here. We have a wide range of members, with tins of experience. Always remember that while we share a lot, we are all different as well, there are no two of these the same. I was a brain guy, inside f the left temporal, but we have several members who have scalp AVMs.
If you go up to the magnifying glass on the top right, search “scalp” and you will get some results. Some are a little older, however there are still members here from the groups. You may also want to look at the Facial Group, several folks refer to AVMs involved from the face to the scalp. Click on the three lines top right, groups, and then scroll to facial.
Hopefully this helps! If not let us know! Take Care, John.
I’ve not seen a lot of people talking about a scalp AVM but I think you’ve got at least one friend, @ali7n, who was talking recently about an extracranial AVM.
So far as I understand these things, I’d expect the treatment to follow more similar lines for an extremity AVM, or perhaps a facial AVM and the treatments for these seem most often to tend towards sclerotherapy rather than excision or embolisation. If it is wholly extracranial, then the @Extremity folk or @Facial folk may be able to share with you their experience.
Welcome on board!
Richard
Hi @Svetlasohma (and thank you for tagging me @DickD - sorry for the delay) I’d be happy to speak with you about my experience. It took a few months of procedures (ultrasound, MRI, then angiogram) to determine that my scalp AVM was completely extra-cranial – not going into my skull or affecting my brain at all. One doctor told me to get the embolization alongside surgery and another doctor cautioned me against messing with it too much, since it isn’t giving me too many problems. 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. Keep me posted on your process. Based on my expeirence, I’d only work with a dermatologist who specializes in AVMS. So many doctors don’t know what an AVM is. I went to a dermatologist years ago for mine and they just injected it with a steroid and sent me on my way! Happy to share my doctor’s info. I’m based in NYC and felt i received very good care.