I have an AVM on the outside of my left leg, between the calf and ankle, it was treated and was left with a large scar from a huge necrotic wound. When I’m in the shower or the sun, my foot is beat red, and the arteries and veins become engorged. I know it’s growing again cause I can feel it. I wasnt able to for a while after the treatment. This also happens when I crouch down and bend at the ankle, once I stand up my foot feels like it’s on fire, bright red, veins engorged and I can barely stand it. I have a one year old so bending is sort of a necessity. Anyone have these issues?
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so sorry to hear what you’re going through. Did your doctors try treating the AVM through surgically removing it or at least have it treated using radiation therapy? it think an AVM on a leg has a higher chance of recovery if it’s treated through surgery. you should try asking this with your doctor . I hope this helps
Hi @JamieC
I’m sorry to know you’re going through these issues. There’s only one other person I know who has had a visible necrosis and it wasn’t on a leg. I’ll nudge them and ask if they have any thoughts to share.
My recollection is that, having had the AVM removed, there was a large area of necrosis and I think this was resolved (and I hope has remained successful) with plastic surgery.
Extremity AVMs seem to me to be the most difficult of AVMs to treat. I hope some of the @Extremity AVMers can share some of their experience with you as well. I’m not sure that I remember anyone reporting necrosis, however.
Very best wishes,
Richard
They said it couldn’t be removed, they embolized using Onyx in Aug 22. I was diagnosed with it earlier that year. The complications after nearly killed me and almost lost my foot. they didn’t believe me that something was wrong until my skin started melting off 
that took about 9 months to resolve.
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Hi Jamie, I have an extremity AVM in my arm. It’s not in the leg but I’ll share my experience with you. I have had 3 embolizations in that arm. The third one went bad. They embolized an artery instead of a vein. I woke up during the procedure because of the extreme pain. They used a gel like substance instead of the alcohol & I was screwed. No way to get the gel out. My skin necrosed slowly over the next few months. It was the most painful ordeal I have ever faced. I was given morphine, fentanyl oxycodone. Nothing helped with the pain. I just had to endure it. This was back in 2007. It was years before I was pain free in that arm. I have a major scar that looks like I was a burn victim. I have been told that I need more embolizations but that was my last one. I am 64 years old & have had the AVM since birth. I was diagnosed at 6 years old. My arm is now permanently bent a little. I can’t straighten it out. I do feel for you especially because it’s your leg that is weight bearing. If I can answer any other questions you may ask, please reach out to me.
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Thank you for sharing your experience and I’m sorry, you went through that. Did you have issues with heat exposure with the scar after treatment? I’ve been trying to figure out if the problems with heat exposure is the nerve damage, scar tissue or the AVM.
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Your scar very much looks like mine did when it was newer. Yes, being in the heat or sun made it burn terribly. I was told to put sunscreen on it. A bandage covering it helped some when I was outdoors. Actually, I tried not to be outdoors, it was so bad. It was a very long time before it quit hurting, maybe a couple of years & the sensitivity to the skin lasted longer than that. Mine was not pain from the AVM but the procedures that resulted in the necrosis. I would bet they embolized an artery too. I think yours will get better. You will always have a horrible scar. I was in my late 40’s when it happened to me. Please hang in there. No one understands your pain better than I. I didn’t have a little one so you are really having it rough trying to take care of the baby & yourself too. What part of the country are you in? I’m in Oklahoma.
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@JamieC Hi Jaime My younger sister had necrotizing Fas on her leg and foot . She nearly lost her foot - she can not have her leg/foot in the sun. She was Treated at Stanford as well as wound care specialist at home.
This first occurred in 2013 and she still has had issues with her skin graft. She has to keep it moisturized - we have Ehlers Danlos and since her NF she has become allergic to many things so she uses Vaseline to protect it and moisturize it.
They also want her to use compression but sometimes that makes it worse.
It caused alot of nerve issues as well.
They told her not to be in the sun with it so she tries to keep it out of the sun as much as possible but she lives in Sonoma with my parents.
Your Dr should refer you to a wound care Dr .
also if the avm is not completely gone you should get a remote consult from Dr. Michael Lawton out of Barrow in Arizona.
Hugs Angela
I live in NJ. Yeah having a one year old who walking early definitely has proved to be a challenge with this, and I’m her primary caregiver. I was able to get an appointment with my IR that treated me the first time, I’m a little skeptical with him cause of what happened after treatment and he didn’t really seemed equipped to deal with the complications. He just kept saying, this has never happened before. But no one else wants to touch my leg, between the AVM is being treated, and the complications from it. He ordered an MRI/MRV/MRA, and has assumptions that my symptoms means it’s growing back. But I also developed CRPS after the procedure along with the wound, so he doesn’t know what is related to the AVM and what is the CRPS. I told him that there are two different pains, one has been consistent, while the other started back up in the past 4 months. I know my body, he second guessed me before when I said something was wrong, and didn’t believe me till my skin started melting off. So he is airing on the side of caution now. Hopefully it’s just the CRPS getting worse in the heat and not my AVM growing back already. We’ll see what the report says
Hi Angela, thanks for your response. I wasn’t told to avoid sun exposure, but I think given what I’m hearing and my own symptoms that I am going to try. It’s hard with my daughter since she’s one and loves being outside. I’m sorry your sister went through this. when I initially went through I was seeing all kinds of specialist including an amazing wound care doctor, I found I was pregnant half way through my skin grafts and wound healing, which they said helped the wound, due to the extra blood volume but everything else stopped because I was then worried about my pregnancy and attending the 4000 doctors appointments being high risk. I’m now getting back on track, or trying to.
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Hi again, the dr that seemed to know the most about AVM’s that I saw was a hematologist. Have you seen one. Also I went to an orthopedic oncologist that was very good.
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I finally got an appointment with the AVM Center of NY which I’ve heard nothing but good things! Hoping that they’ll be able to give me real clarification and treatment options since it’s confirmed the AVM is growing back.
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