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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

Thanks Richard. It is hard as you would be aware. Just praying for something to help her.

@Katgrl @D11

I hope you are both doing ok. Do you have any thoughts to help @Vanessa2? Thanks,

Richard

Hi Richard.
We’re still going. Next treatment again on the 30th January. This will be Holly’s 11th sclerotherapy in 5 years☹️

I hear you :frowning:

I would wish a much better 2020 for you both!

Lots of love,

Richard

Hi Vanessa,

I have a tongue AVM. Nothing unmanageable but inoperable and life-threatening - My very own little time bomb. I am at home from work today due to pain and slurring.
First and foremost, I send my regards and best wishes for a successful and pain-minimised 2020.
I cannot imagine your pain. My kids are fit as malley bulls, but as a mother I know it hurts and frustrates me immeasurably even when they have a cold and I can’t fix it.
Also, I am interested to hear more about your findings re: experimental drugs coming to Australia, and would really like to know what specialists you have on the job. I do not navigate this site very well especially since they “improved” it. I don’t know much because I kinda gave up after they said inoperable.
Happy to provide further/alternative contact details to discuss further. I live in Canberra and go to QLD at least once a year.

Regards
Bek

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Hi Bek

I can not believe finally there is someone with the same as my daughters. Yes it’s terrible. Hers atm is in operable due to the size. If they tried to remove it, it would mean 3/4 of her tongue. We’re atm in Royal Children’s hospital Melbourne for Holly’s 11th sclerotherapy. This hasn’t gotten rid of it but has stopped her artery bleeds thankfully. Holly has a fee specialists. Her main ones atm are from Plastics and Nuclear medicine specialists. Holly also suffers a lot of pain. There is a drug they are trying to get in Australia. It’s a drug they use for cancer patients with melanoma Apparently a Boston Dr discovered there is a gene in AVM’s that’s the same a gene in melanoma. Would definitely love to know your journey with your AVM. Is your AVM inside your tongue or more protruding outside?

Kind regards
Vanessa

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Good luck today!

Thank you. She’s in ICU recovering now.

Looking good. Hope she feels ok when she’s more conscious. :crossed_fingers:

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Hi Vanessa,

Best wishes to you and Holly. AVMs suck. I’m so sorry you have to deal with this much pain. My heart hurts just thinking about it.
My AVM is mostly hidden. It’s in my chin, jaw, tongue. It has been quite well-behaved for the last couple of months, small swelling episodes, a few days off work. People rarely know I have the AVM but occasionally will ask me “what’s wrong with your tongue?” or if I have been eating berries.
My biggest risk is airway blockage. I usually head down to the hospital if I start to drool. That means swallowing is impeded and air might be next.
My chin goes up and down randomly. Sometimes I look like I might have been in a bar-fight. I also occasionally get pain in my jaw that feels like my ear drum is going to explode. It is not going to explode, I was pretty sure it was going to the first time it went off. I was 12 at the time. It didn’t. So that’s a win.
Soft foods are my friend. Soups and protein shakes.
Teeth are my enemy. Dentists fear me - which is fair enough.

May you be surrounded by love and your days pain-free.

Bek

Please tell Holly that I am impressed that her eyebrows were on fleek for the op!

Hi Bek
Thank you for getting in touch. Hope you and your family are all safe with this horrible Covid19. Yep they suck that’s for sure. Since Holly’s last treatment in March, her tongue cramps sometimes so I have to find out what that is all about. Where are you located? We’re in Queensland Australia. Are you having yours treated?
Glad to talk to someone else. It’s been 3-4yrs I think and have only spoken to one other lady.
Regards
Vanessa

Holly’s at the beginning of her treatments.

P.S Her eyebrows are natural and never been touched. Sooo jealous I am. :smiley:

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Bek,

Love both of these!! There aren’t many benefits to having an AVM of any kind but I do rather like the idea of frightening your dentist!! My dentist always looks in my mouth to see his next exotic golfing holiday and I hate that I am paying for it!

I do realise that you’re making a very serious point and that actually getting dentistry done for you is fraught with complications, so I hope you don’t mind me poking fun slightly. It’s really helpful to see your pictures. I do look upon my time here as very educational. I learn a lot about the world.

Thank you for sharing and may you be surrounded by love and your days be pain free!

Lots of love,

Richard

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