Hi everyone I’m new here I’m 33 years old and I have a rather large avm in my left ring finger and palm. I have known about it since my 20’s and have been passed around doctor to doctor some people were more eager to work on me and not very educated while others would drop me when I didn’t agree to the type of treatment offered I just went to Beth Israel in Boston first of all I saw the dr and then had to wait almost 6 months for my next apt for an mri mind you by this time I started having swelling recently in my bicep I am almost 100 percent sure there may be another one in there from the pain I am experiencing I voiced this to my dr and he agreed to do the whole arm the orders were messed up twice and only went to my elbow which I don’t think there’s anything in that area after weeks of fighting back and forth they told me it would scan the whole arm and the orders were now correct when I went in it was so strange I told them how it was supposed to be and they basically told me oh well that it would be a 3 hour scan then I was so confused there was a few moments they made me feel like I was a burden after doing the first part of my scan I’m asked are you sure you wanna do the hand now? And I’m just like that’s exactly why I came here this is long over due since Covid I need this scan. Both techs looked at me upset. When I did the overview with my dr on a phone call I thought I would be going over the scan he didn’t tell me of any of his findings this to me was a huge red flag he was more concerned with jumping into surgery but also didn’t seem too confident. The whole interaction felt off so I told him I’m looking into another opinion and he got all defensive telling me make sure the dr is real that I want to see and he’s the best and works with the best in the world and isn’t familiar with this dr. It really left a bad taste in my mouth I’m very educated on this and I feel I’m at a place where anything invasive will make matters much worse for me. Now I have no idea what to do or where to go a lot of dr seem like they don’t really know how to investigate AVMs they are more concerned with poking around in them for research purposes. I even asked if I could have a genetic test done and all he did was complain it cost too much and he could do a biopsy I’m pretty sure it’s best with a blood test biopsy just seems crazy on a high flow avm. What I don’t understand is how dr’s will go poking around in there before giving you a genetic test. What if you have multiple and they don’t know and hit one? Just the thought of this makes me sick. I just feel so hopeless at this point.
Hi! Welcome!
We have a fistful of people with hand or arm AVMs here, so I’ve moved your post to a place where they’ll find it and I hope some of them can share some of their experience with you.
For the record, I think you’re absolutely right to be cautious about operations. Sometimes we see these things as urgent but actually it is much better to take a knowing step forwards than a rushed step forwards (unless something really is urgent). I’m mostly hoping the Extremity guys can talk to you about where they were seen and by which discipline because I’m a brain AVM person. I assume you’re going to need a vascular specialist but you also definitely need someone who is perfectly au fait with AVMs and any associated conditions: you don’t need anyone practicing on you, if you know what I mean!
One of the possible complications with extremity AVMs is something called Klippel Trenaunay Syndrome and if you’ve got whole limb involvement and/or port wine stain/haematoma or overgrowth of the limb, I think KTS needs to be considered first. We’ve an article written by a previous moderator about KTS to check off KTS first before digging in with the scalpel or the glue. There are other syndromes that also bring limb AVMs with them: I might need to look them up. I think Parkes Weber Syndrome is another that could be relevant.
The thing that I think we all agree on here, especially for treatment in the US, is that a second opinion is only a matter of common sense. No-one should be browbeaten into buying services only from the doctor in front of them for rare conditions.
Gamma knife seems to me to be uncommon for extremity AVMs: embolization seems to be common, including alcohol embolization, but also sclerotherapy of one kind or another seems to have been used for a number of our patients, so I’d be asking about whether KTS is something to consider and whether sclerotherapy would be more suitable than embolization. Sometimes doctors only talk to you about their skillset.
Do you have any limb overgrowth or port wine stains?
It’s really good to have you on board. Welcome!
Richard
Hi I have an AVM in my right arm that is mostly located in the forearm, tricep & bicep so mostly the whole arm. I’m 65 years old. I’ve known about it since I was about 8 years old. I was born with it but it wasn’t noticed until I started playing basketball & my parents noticed that arm was bigger. They thought I injured it. We went to my family dr who sent me to see a dr at Holt Krock clinic in Ft Smith, Arkansas. He called it a vascular tumor & said he had a dr friend that had one too. The next time I saw the dr, his dr friend was there too. He was emphatic at that time to do nothing to it, that usually the only time these things were to get out of hand was during puberty, ( this was in the 1960’s). I rocked along through puberty with no problems & went for checkups. When I got married at 18, I was put on high dose estrogen birth control, may arm swelled, was bright red, hot to the touch & very painful. I went to the er, they were ready to do surgery right then & there. I told them to call my dr. He said absolutely not. He’s said it’s not a normal tumor & if they weren’t careful I could lose the use of my hand & if they missed any part of it, it could grow back. He told me to try baby aspirin & that did the trick for me. Most dr’s will discourage that but it helped me & for the next few years if I overused that arm it would flare up & I would use baby aspirin. Fast forward to my 40’s. I hadn’t had a checkup in years so I went to an orthopedic dr. He had no idea what it was & said so & he sent me to an orthopedic oncologist in Oklahoma City. She immediately knew what it was & this was the first time I heard the term AVM. We did MRI’s with & without contrast & yes it took a few hours. I have had several embolizations done on it & it has shrank. Unfortunately the last embolization that was done, they used a gel type of material instead of alcohol & embolized an artery instead of a vein. I woke up during the procedure in extreme pain. Needless to say, the blood supply in that part of my arm was blocked & so it necrosed from the inside out. It was the most painful thing I have ever experienced for months. Imagine a burn patient. That’s what my scar looks like. I am not sorry I had the previous embolizations but I would not do the gel. I suggest an orthopedic oncologist who works closely with a team of interventional radiologist & they must have experience in this field. I am probably the oldest AVM survivor that is part of the AVM Survivors Network.
Hello! I am so sorry to hear you are dealing with all of this. My son was born with a high flow AVM on his right thumb and palm. He has been seeing the AVM team at CHOP led by Dr. Denise Adams for the past four years. The team believes he possibly has a PTEN genetic mutation which causes this AVM. Because of this, Theo has been on a drug called Mekinist since the fall of 2022. Since he has been taking Mekinist, the AVM has not continued to grow and he has been able to better manage the pain. Although we have had a few doctors recommend surgery (notably Dr. Rosen in NYC), we have not once heard of a successful AVM extremity surgery which has taken place. They always seem to grow back and cause more issues. The interventional radiologist on Theo’s team has mentioned bleomycin injections, but we have not moved forward with those at this point. I agree that getting a second opinion is key and I wish you the best of luck!