First post, so please excuse any newbie goofs.
My spouse was just diagnosed with a facial AVM, 3cm, right between the eyes and up a bit, whatever that spot is called. From the CT scan, it looks like the arteries/veins involved are running behind her right eye, and indeed that eye has a darker circle under it.
We’re in Japan and need to find an experienced AVM specialist (preferably with experience in facial AVM) who we can communicate with well, so they need to speak either English or Chinese, preferably English. We’re not having much luck!
I am aware of the second opinion program at https://www.barrowneuro.org and will start there if necessary, but I’d like to ask first if anyone is aware of a doctor specializing in facial AVMs that we might be able to consult with virtually. (Email, Zoom, etc.) We really just need to find out what our options are.
Welcome to the forum! It’s great that you found us!
We have much fewer @Facial AVM patients here so by tagging them, I hope some will share their experience. You’ll find a number of Facial AVM stories in the Types of AVM / Facial AVM category.
The two names that I associate with facial AVM are Wayne F Yakes and James Y Suen only insofar as I’ve seen their names most times here related to facial AVMs. Both are in the States.
The Barrow Neurological institute is definitely top notch and there are a number of other first class neuro practices in the US. It may be interesting to understand how deep your wife’s AVM runs as to whether a facial specialist or a neuro specialist approach is most appropriate. Different methods seem to me to be used.
Good luck! I hope some of our Facial people will offer their experience.(hint)
Thank you for the information, Richard. I’m guessing a facial specialist is probably what we need, but it looks like the area behind one eye is involved, so perhaps the Barrow Neurological Institute can provide some advice. I’m assuming it will be very difficult to get any virtual consultation regarding a facial AVM.
Thank you for tagging the post. This community is very helpful. Before I found this site, there was nobody I could even ask these questions of.
I’d definitely take views from both neuro folk and facial. In my mind (and I’m no doctor or expert) there is a point at which an AVM becomes deeply embedded enough to warrant neuro and a point at which is is more on the surface and more towards maxillofacial. The challenges of the former are to do with suffering a stroke if it bleeds. The challenges of the latter are the sheer number of nerves and muscles in the face: it is a most mobile place. So I’d want to understand the views of both.
I have read of people who’ve had someone misdiagnose an AVM appearing to be a birthmark and deal with it simply as a plastic surgery resolution and get in a mess. So you need someone who understands AVMs and is resolving the underlying issue not just its appearance. Sometimes it may be best not to act: even a deeply seated brain AVM (in fact probably most often) can be best left untreated, so do ask about both the benefits and risks of any intervention.
Do tell us how you get on because it is really helpful in rare circumstances like this that we learn from each other and I would say that facial AVMs are rare among rare.
Very best wishes,
I can add Alex M Barnacle at London’s Great Ormond Street Hospital and Fergus Robertson at Moorfields Eye Hospital as ones who have been involved in bleomycin treatment of one of the patients here, in case that might be a useful lead.
Thanks for the insights. Indeed, we were originally told, then repeatedly by two more doctors, that this was a simple lipoma. Fortunately the doctor we went to to have it removed had the foresight to do some imaging first. I can’t imagine what would have happened if someone had just taken a scalpel to it!
Thanks again. I’ll post updates.