Hello everyone! I was diagnosed at age 50 with a submandibular AVM in October after a CT scan, which was confirmed by MRI and cerebral angiogram in December. Since the diagnosis I have had trouble finding a doctor to help me treat this. I got an appointment with a neurologist and a neurosurgeon at one of the top facilities that comes up when you google AVMs and I was more than a little disappointed in the result (especially after having paid all that money to travel up there). They basically said it was clearly an AVM, that it was rare, and that I didn’t need to be seen by a neurosurgeon and to see a vascular malformation specialist (which is what I thought the appointment request was supposed to do). One said he would put in a referral but I haven’t heard anything as a followup so I’m wondering if I’m going to be ghosted. Therefore I am seeking recommendations from people who have had facial/jaw AVMs who might be able to point me in the right direction. I am in pain all the time and I am so tired of hurting. Any advice would be appreciated. Thank you for reading!
Sorry to hear you are in pain. I hope you are close to Little Rock, AR.
I highly recommend Dr Suen and/or his team at University of Arkansas of Medical Sciences (UAMS). Top notch for facial AVMs. They have helped people traveling from all over the world.
Thank you ConnieK! It looks like he would be about 8.5 hours away which is closer than the last doc I saw 
I watched a couple of videos he has on youtube and he seems like a knowledgeable doctor and has great reviews.
I just called and tried to set an appointment but they told me I need to fax a referral. I asked if I could forward the imaging through mychart or anything and the guy I talked to said I needed to fax a referral first. I was really hoping to self-refer, as inaction from the diagnosing doctors is what led me to look for a new doctor in the first place and I have little hope they woud send a referral if I asked. Any suggestions? I feel so defeated at this point…
This is bringing back so many memories of when we were dealing with proper diagnostic and insurance issues! You are almost to the help you need. I recommend sending a note thru MyChart to the previous doctors to ask for the referral to see a vascular clinic in UAMS or any of your choice. This will protect you for insurance coverage as well.
I’m so sorry to hear about your diagnosis. I would take Connie’s advice and ask for the referral. I have spoken to a couple of neuro interventional radiologists who told me they were able to embolize avms in the jaw bone and their patients didn’t experience worsening symptoms, because they were able to catch it early enough. I hope you get the care you need.
OK, sorry I’ve been extremely AWOL, but there has been a lot going on and I want to give an update and also ask some questions.
So I followed Connie’s advice and asked for a referral to Dr. Seun, which I got and I saw him in August. He has definitely seen his share of AVMs so he is very familiar with them and I had confidence in that. After seeing me, he did not think resection would work for me because of the closeness of my facial nerve and he suggested embolization. Inwardly I was disappointed because I honestly just wanted this thing cut out of me and to not have to worry about this anymore but that wasn’t an option for me. So I had the embolization last week. I think they said they did 4, and they said this destroyed about 75% of the AVM but that I need to come back for another procedure to finish it up because it’s being fed from multiple areas and they couldn’t do all of them in that one sitting.
While in the hospital I noticed two very distinct lumps forming in my face and I got concerned that I was forming a clot. But they said they think it is the glue. One doctor told me it should absorb over time and one said it might be there forever. Does anyone know how this works? Will it hurt forever? I don’t want visible and palpable bumps in my face forever and I had no idea I might be able to feel material in my face after this. They used Onyx, if that matters. It isn’t just that I can see and feel it either—it’s that it hurts (this may be from everything being pretty new right now but it’s definitely more painful than the AVM alone was). As an example, when I yawn, I interrupt myself because I can feel the lump of glue pressing into me and it jolts me out of the yawn every time.
I also was not expecting the horrible amount of pain I was in for the first few days. When a couple of residents came in to check on me after the procedure I asked if it was supposed to hurt this bad and they looked at one another and kind of smiled sheepishly and said yeah, unfortunately it is pretty painful but that they would give me pain meds to help that. Now I just have the occasional shooting pain into my jaw, pain if I try to chew on that side of my mouth, and the pain if I touch my face, so it isn’t as bad as the first few days but I’m not pain free by any stretch of the imagination.
Complicating the issue is that during the procedure they located what I guess is a large “flow related aneurysm” (it was 12mm x 8 mm) in the same area with the “high flow AVM.” This aneurysm was not present in the CT, MRI, or prior arteriogram less than one year ago so this was a surprise. I don’t even know what to ask about this. Is it common to have an aneurysm with an AVM? They said they filled it with glue, and I believe this feeder artery is one of the embolizations they were able to complete. Do these things just spring up out of nowhere like that? I worry that I will develop a new one out of nowhere too and I don’t know if that’s a reasonable concern or not, or how concerned I need to be about having an unknown aneurysm rupture.
Anyway, if anyone can weigh in on any of my questions it would be appreciated. I promise I will try to stay more involved and not disappear, but I was in a dark place there for awhile with all this hanging over me and I just really couldn’t talk about it.
Hi @justme
I think the tiny bit I can add to possibly help you a little along the way is that I had an embolization for a brain DAVF (a type of AVM) and I think we tend to consider embolization to be a very minimal kind of operation but it is much more impactful than you’d think.
I also suspect that having an operation in your brain is very different from having a similar operation in your face: there are no muscles, no nerves, no pain sensors where I had my op but your face is full of all of these, so I guess I’m not surprised it has been tough. I think embolization is tough and in your face, tougher.
My doc also warned me beforehand that we might do two approaches to glueing up my DAVF. After the op he felt he had got it 100% but I had a review angiogram at about 8 weeks post op to check. Fortunately, he still felt it was fully occluded so I didn’t need a second go but it does seem typical to do embolizations in one or more steps, so don’t feel singled out too much there!
Very best wishes,
Richard