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AVM Survivors Network

Tongue AVM

Hi everyone. I’m from Australia and I’ve been a member for a few years but have never talked before. I guess it’s hard reading everyone’s story because I haven’t seen anyone the same AVM in a tongue. My daughter is 13yo and was diagnosed at 4yo with an AVM in her tongue. A very high pressurised and angry AVM. We are now going into her 11th Sclerotherapy with still no luck. No reduction in it. It just keeps coming back. Surgery means more then 3/4 of her tongue will be removed so her specialists are trying to avoid that. We’re currently waiting for a trial drug to be released in Australia in the next few years and hopefully they will get her on it. Is there anyone who has an AVM inside her tongue? Not outside but fully inside? As a parent to see what she goes through having the sclerotherapy. Is heart breaking. She’s put in an Induced come and life support for days. Then recovery time in the hospital and with no success. But what other option is there for her. It’s tough.

Vanessa,

Hi. Its great to hear you speak up and I hope we can find a few people who can help you. I’ve had a look round and invited a few people with tongue AVMs, hoping they can help.

I would say if you don’t find anyone helping with an actual tongue AVM, it sounds like you might find friends in the @Facial group.

11 sclerotherapies is a hell of a lot, and as you say, Holly’s induced coma and life support is a further trial for all of you. I have to say it is among the toughest situations anyone might face. I think you’re doing amazingly carrying on. Hats off to you: really. I’m thinking of you.

Wishing you the best and I hope others will have some experience to share with you.

Very best wishes,

Richard