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AVM Survivors Network

AVM on tongue worsening; no treatment plan- anyone else?


#1

I was born with AVMs in my tongue and inside my cheek/neck area. Both have worsened over time and rapidly accelerated throughout my 2 pregnancies. I’m 49.

Neither is pleasant but the tongue is what really concerns me, as more and more “blebs” keep appearing on my tongue. My tongue has gotten so puffy and bumpy that I’m afraid I won’t be able to eat, drink, or eventually even close my mouth. How can a person function without a tongue? Or a tongue that won’t fit in their mouth?

I’ve met with specialists at UCSF and UC Davis. Nobody wants to touch it for fear of making it worse so I am hopeless. If I think about it for too long I start to panic so I try not to look at it or talk about it. It was a big step even joining this message board.

I don’t know what I’m hoping to accomplish on here. I guess I’m just wondering if anyone has a similar situation and what they’re doing about it. I had one conversation with a woman who had a tongue AVM treated and it came back so bad that I could barely understand her, which freaked me out even more of course.


#2

Welcome to our group! I’ve been a member here over two years and don’t recall another post about a tongue AVM. If you search tongue by hitting the magnifying glass in the top right and typing tongue some do come up. I didn’t get a chance to read them so not sure if they will be informative to your case or not. I apologize that I’m, n ot more informative, my AVM is left temporal. Again welcome, John.


#3

John,

I agree. Most of the tongue searches seem relevant but a lot are very old posts from members we’ve not seen online for a very long time.

I’m hoping @Debra is still active and can share some experience.

@Katgrl

If you dont get much luck with specific tongue-related advice, it maybe some of the @Facial group are able to help.

Very best wishes,

Richard


#4

Hi Kat Girl,

Thanks for contacting me. I had an AVM in my tongue and after being diagnosed for years, I finally found the right doctor. In June of 2010, I had surgery at UAMS (University Arkansas Medical Services, with Dr. James Suen. He is one of the best AVM experts in the world and certainly in the US. I live in LA and an ENT at UCI was going to perform my surgery in Jan of 2010 and he called me 5 days before surgery to tell me he was canceling because he thought I might bleed to death. Most doctors don’t know what to do, so I got Dr. Suen’s name through his office, who he consulted with about my case. Long story short. I had a consult with Dr. Suen and had surgery 1.5 months later. I had a 6 hour surgery and I have been AVM free ever since. Surgery is the permanent fix if the surgery is a success, or at least to relieve symptoms. My tongue was getting so big and heavy it was pushing on the bottom of my mouth and giving me double/triple chins and a full face. I was also having problems sleeping, eating, breathing and sometimes speaking clearly.
You must go to an expert in facial AVMs. Most people don’t understand them so they won’t touch it. UCSF is great for brain AVMs but I don’t think they have any experts for facial AVMs. Have you met with anyone who is experienced with AVMs? If so, who was it? What issues are you having now? There is a great site on facebook, with a few of us who have had avms of the tongue, that I will get you the name of the page, so you can join. The best thing you can do is to educate yourself as much as possible. Please feel free to ask me any questions Kat. Big Hugs!! debra


#5

Hi Kat! I’m glad you reached out to the group. Sorry to hear that you’ve been having so much difficulty with your AVM. I can relate in that I have an AVM in my left chin (just outside my mandibular bone) and was struggling to find someone who could treat it for a while.
I’ve since found a great team at the University of Michigan, Ann Arbor under Dr. Gemmete, and my AVM has made a lot of progress. I really trust his team and feel confident in my care there. However, I was also treated by Dr. Berenstein at Mt.Sinai in NYC and he is really respected in the field; especially with facial AVMs (my current doctor often takes advice from him). He quite literally saved my life when my AVM was at its worst. I can link you to his site (https://www.mountsinai.org/profiles/alejandro-berenstein).
I don’t know if any of this information is helpful. But I want you to know that you have all my unity. I’m also here to talk more if you need. I’m familiar with the uncertainty and unknowns of treatment; and feeling like there’s nowhere to go. I’m wishing you the best and I hope you find what’s right for you.


#6

Thanks for your post Rachel! I appreciate it!!