Hi, I’m Ellie. I developed an AVM on my right had & had surgery at 9 months old. It came back, & I had additional surgeries at 9 years old and 18 years old. I stopped surgery, as it obviously wasn’t solving anything. Now at 60, I’m researching new technology into treatment. I saw a vascular surgeon this week; he’s referring me to UC San Francisco’s Vascular Anomalies clinic to look into arteriography with percutaneous embolization of the AVM. Is there anyone else out there with a hand AVM? Have you experienced this procedure?
Ellie,
First, welcome to the site! I hope we can support you and help you find some answers.
I can’t say I’ve seen conversations about hand AVMs in the period that I’ve been on the site but I did a bit of re-filing of conversations perhaps a month ago into more specific categories to help people find relevant information and I’ve done a further search today and put some conversations on hand AVMs into the AVM in Extremities category.
Please note that where a conversation is very old, people may not still be logging into the site and we migrated platform in summer 2016, which may have made interacting in the new platform a challenge too far for some people.
I hope you can find current members with extremity AVMs who can help – any kind of extremity AVM may have similarities, even if it is in a hand or wrist, arm, leg or foot.
Hope this helps!
Very best wishes,
Richard
You can also use the search facility (the grey magnifying glass icon) to search for terms like percutaneous. There are a handful of references I’ve found.
Hope this helps, too!
Richard
Hi Ellie
My daughter has an AVM in her thigh that causes lots of agony. It’s been removed twice and due to be removed again soon. This will be last attempt at surgery. She’s 16, and never without pain.
I’d be very interested to hear any advancement in extremity AVM treatment.
Good luck.
Gretta.
Hi Gretta
What I was told last week (by a vascular surgeon) was that because of the structure of AVM’s it is very difficult during surgery to accurately determine if all of it has been removed. The result is it comes back. What they are recommending for me is something called percutaneous embolization, which is less invasive than surgery. He did say that even this procedure is not 100% succesful, and sometimes has to be repeated. But it sounds promising. I encourage you to research it online. I can empathize with your daughter. At least with my hand, I was mostly able to shield it from unwanted contact. But an AVM in a thigh would be subjected to constant pressure…from clothes, sitting, walking, etc. The only positive outcome of the constant pain is that after a while, my brain managed to pretty much block it out so that I am not aware of it unless I focus on it - or bang it. And I wound up with a very high pain threshhold. I’ll be praying for your daughter to have a succesful surgery, and that they remove all of it!
Take care.
Ellie
Hello, I have multiple AVMs in my hand and had 2 sclerotherapy and embolizations and none of it worked for me and gave up. The next solution was a injection of a chemo drug into my hand which I didn’t want to even try. Good luck!