Avm on right hand. Help

Hi all. Im new in here. I live in turkey and 33 years old. First, Sorry for my language mistakes.

I realize my issue with AVM when im 30. First in middle of my hand, swelling appear. I search for surgeon, the only doctor i can find here, (in Turkey doctors dont know about this yet) he said “we have to do embolization”. My first surge was on March this year. And then nothings changed, my pain and weakness was worse than before. And i give up to do surge. Because it feels like its gonna be worst.

As a patient, ım so afraid of lose my hand or sensetivity. First i want you to suggest me a few doctors if you can. Second; i want to ask:

-can i keep on go to gym?
-should i use my hand less?
-that compression bandages and ice pressure really works? Or these are useless?
-anyone of you have a hand loss?
-they say AVM leads heart issues or any worse problems?
-what is the worst scene i can face?

Thank you all, sorry if its to long. Because first time i found these kind of forum. Really thanks. All get well soon.

Hi I have a VM/AVM in my left arm (my Dr.'s can’t make up their minds). Just speaking for myself I try to use my arm as little as possible because, when I try and use it my pain gets worse and my arm is even more swollen/irritated. Though I’ve spoken with quite a few people who just wear a compression sleeve and are able to do the same things they did before. So mostly I would say just figure out what works/doesn’t work for you because everyone is different. Also I don’t know if you have a facebook but there is a facebook group called Extremity avms, and there are loads of people on there all with extremity avms who would be able to answer questions, relate to what your going through, etc. :slight_smile:

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Have your doctor send your case to Dr. Wayne F. Yakes at The Vascular Malformation Center at Swedish Medical Center in Englewood Colorado.
He is the leading expert and treats people from all over the world.

https://www.theyakesvascularmalformationcenter.com/