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AVM Survivors Network

New to group. Multiple Avms in hand


#1

Hello, im bit new to this group. I got my first AVM in 2014 in my right dominate hand and the surgeon removed it. After few years I was good but recently last year I developed symptoms again and my hand started to swell tremendously and throb in pain. They discovered another AVM in a different location but same hand. Dr. Rosen in NYC did a embolization in April this year. Post procedure i had many blood clots in my hand and still remaining malformation and another AVM popped up in my thumb area. My hand swells up so much and in throbbing pain again. Now im getting another procedure in October this year by Dr. Rosen and possible surgery afterwards if doesnt help by a surgeon. I been told what I have will be lifelong on going procedures or surgeries. I saw others have experienced strokes during these procedures which is bit scary. Im only 21 years old and LPN nurse. I need my hands for work and its extremely hard to work in this condition. Im so depressed from it all and really just need some encouragement.


#2

Hello and welcome to the group. Great to see someone with medical background. I’m married to a nurse who has been incredibly helpful for me to understand things a lot better. That and google research of course! I have a brain AVM and have had gamma knife, so fairly different than your case. There is an extremity group here as well that has a strong membership and good discussions on the unique challenges AVMs such as yours present. If you scroll down on the General Discussion tab and on the left you will see it under the Type’s of AVMs heading. Thanks for joining us! Take Care, John.


#3

Hi @Shannonmarie. I’m sorry you’re going through this. Like John, I have a brain AVM but we do have a sizeable @Extremity AVM group here. Do join that group and look out for posts from other Extremity members.

My experience of being here and reading about other people’s AVMs is that – if I’m perhaps a bit over honest – extremity AVMs seem really difficult if not impossible to control. So I think you’ll be spending more time than any of us would like, or seems fair, fighting your AVM. I do wonder if brain AVMs are just that bit more controllable because they live in a protected place, whereas the need for flexibility in a limb means any treatment is more liable to disruption. However, I don’t know. I’m no doctor.

I’ve invited the extremity members into this conversation, so I hope one or two will welcome you properly!

Very best wishes

Richard


#4

Hey there! @DickD is correct, somewhat.

AVMs in your hand are particularly difficult because the physical area is so tiny. My AVMs are all in my left arm, most concentrated in my pinky finger. It’s extremely difficult to get rid of these extra capilories without creating nerve damage. I’ve had one round of sclerotherapy and basically can’t use my pinky anymore. It’s more about management than elimination. Post in @Extremity and we’d be more than happy to give management advice :slight_smile: