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AVM Survivors Network

Tongue AVM


#1

Hello, everyone! I was diagnosed with a tongue AVM at the back of my tongue 8 years ago. It has started to grow with intermittent, minimal pain. I consulted Dr. Wayne Yakes and the treatment for this very rare AVM is the application of ethanol. The swelling from the treatment is likely to temporarily close my airway. I will probably need more than one treatment and my insurance won’t cover it. Has anyone had a similar issue and is there any advice you can offer? I’m very nervous and a little depressed that there are no other options. Thank you for this forum and your suggestions!


#2

Hi.

I’ll have a little look round for you but I know @Katgrl is similarly fighting a tongue AVM.

Very best wishes,

Richard


#3

Hi! It turns out mine is a venous malformation (VM) not an AVM. I contacted Dr. James Suen, and based on my emails & pictures, he is recommending YAG laser & sclerotherapy. I’m in the process of getting an MRI sent to him so we can discuss details.

For the airway swelling, I hear they either intubate you or give you a tracheotomy. Neither sounds fun but at least they’re temporary.

I can definitely relate to being nervous and depressed about limited options. I’ve had this all my life (plus another inside my head that isn’t visible to most people but causes intermittent pain) and have seen lots of doctors, none who are willing to treat me. It keeps getting worse but they all say I should wait until the pain is unbearable because of the risks of it coming back or my bleeding out during surgery. Dr. Suen is the first person to recommend treatment immediately. He’s in Little Rock, Arkansas.