My 15 year old son has an AVM in his left leg. It’s from his thigh to his calf. He has had 2 excisions in calf(after 6 failed schlerotherapies) and will now have cryoablation done on what is in his calf because of new growth and it’s now in his tibia. They said the won’t touch what is in the tibia or what is behind his knee. What is in his thigh causes minimal pain currently. He has begged for amputation because he is done fighting a leg that doesn’t even work properly. I am hoping to get insight on cryptoablation. Has anyone had cryoablation? How was the pain after? Those who have opted for amputation. How did that go? How did you get doctors to listen when you wanted it? Thank you in advance for any and all advice!
Have you joined the AVM Extremities group on Facebook? There are members who have had amputation and can discuss. My son’s AVM is on his palm and thumb. We will explore amputation as well as he gets older.
I just asked to join. Thank you!
I’m not an @Extremity AVM person (and I can’t say I’ve heard of cryoablation – I’ll have to look it up) but I hope one or two folk in the Extremity group might be able to offer their experience of this sort of thing.
I do know we have one or two members who have about had enough with their extremity AVM and have been considering amputation. It seems such a drastic step but I can completely understand the desperation.
Sending you all my very best wishes,