New to group. Multiple Avms in hand

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.


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.

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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


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:

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I know this thread is a bit dated but this is some really-really good advice!
It truly is about managing your AVM condition rather than eliminating it all together. I have a FT job that requires both hands and it came certainly be a struggle…but I distract myself by volunteering to help folks that have it worse than me. I volunteer to help the homeless, sometimes taking them out for lunch. It gives me a good feeling and for the time takes my mind off my medical condition I’ve dealt with, and will continue to deal with, for the rest of my life. I have an extensive AVM in my right arm/hand. It’s significant in my pointer finger as well.

I’m interested in cyber knife and/or gamma knife - Anyone used those for extremity AVM’s? Reach out if I can ever help any of you!

Much love,

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Hello, I know your post is a bit dated but I’m hoping this message does reach you. I also have an AVM in my right dominant hand that was discovered when I was a child. I’m a Registered Nurse so I definitely identify with your struggle. I have never had any surgeries or procedures for I was told at a young age that surgery was not the best route at that time because of a high risk of amputation. Of course technology is way better now. However I learned throughout the years how to deal and cope with the pain and swelling. I would suggest you keep a diary of things you do that day and also foods that you eat. For example I have learned throughout the years that certain foods for me cause inflammation so I stay away from those, very warm showers also seem to help with my circulation and reduce swelling/pain or sleeping with a pillow to keep my hand elevated. I’ve also tried a compression glove that was fitted by a physical therapist. I’m still right handed but I’ve learned to adapt to use my left hand for so much more. These may not work for you but just trying to give you an idea. My nursing career has been a challenge because there has been days I’ve had to go into work with pain/swelling that I could not get to go away fast enough. However the world of nursing is so vast that you can look into other areas other than bedside or clinic. Even for LPNs you could maybe think about case management, nursing informatics, etc. I still work bedside because that is really what I enjoy but I see that coming to an end in the near future because as you said we use our hands a lot. The lifting and bedside care I know is something I cannot continue to do much longer if I want to keep my hand in it’s best condition. I was a LPN for 8 years and RN for 5 years now. I hope this post encourages you in some way. You will have some bad days but you’ll also be happy for those “good” days. Sending you love and hope for many good days ahead.


Thank you so much for the reply!! My son is now on a medicine called Mekinist that seeks to be helping with the growth of the AVM. I appreciate the advice and will stay in touch hopefully with any changes. Thank you again!

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Hi Tori and Shannon,

I know your messages are from a long time ago… it has been a long time since I was last on this site. I also have an AVM on my right hand (also dominant). I still do most things with my right hand but as Tori mentioned you learn to do a lot with your left too :smile:
This is especially true after I had my thumb amputated after a complication from sclerotherapy. I haven’t had sclerotherapy in a long time but am currently on Lenalidomide. My AVM grew a LOT during pregnancy and after my daughter was born I ended up with a chronic wound that I have had for over 4 years now… Thalidomide helped reduce the size of my AVM but I had to stop a few months ago due to side effects. I just restarted with lenalidomide so hopefully that will work better. I hope you are both doing well.

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