Hi guys, my name is Jamie, I’m 33 yo female, with an AVM that was diagnosed at 31. Thought it was an infected cyst or something went to the ER and had to do a lot of research to figure out what I was dealing with. It was causing a lot of pain and issues with blood flow to my foot so when I finally found a IR that knew about AVMs that elected to treat it because I also had uncontrolled blood pressure problems that caused LVH, diagnosed a year before, and never knew why. They embolized with Onyx (August 2022) that unfortunately caused severe ischemia on my leg, was left with a huge necrotic wound, that got infected, I became septic, etc. once the infection healed, I started wound care and a couple months later I found out I was pregnant. I now have my beautiful daughter who is 9 months old after a very difficult, high risk pregnancy. However because of the pregnancy any further testing or treatment of my leg was put on hold. Now I’m having similar pain to when I was diagnosed, on top of the permanent nerve damage from the subsequent wound. I’m so worried it has grown again. I have an appointment with a neurologist in May to access the nerve problems and get an idea to how bad the damage is, and I have to find a different doctor to deal with my AVM. I’m terrified of what they might say, the last treatment had so many complications, and now that I have my daughter, things are different. I know I need to be healthy but I’m scared this time, instead of almost losing my foot, to the complications and infection, I’ll actually lose it. And won’t be able to care for her. I knew that this was something I’d be living with forever, but my priorities and anxieties completely shifted after having a child.
I have an AVM in my arm. They found it when I was 8 years old. I was born with it. I have had multiple embolizations on it & thr last one went wrong. An artery was embolized instead of the vein so my skin necrosed from the inside out. Never had anything so painful. I am too afraid to do anything else. I will be 64 this Friday. I understand your feelings. Just be absolutely sure you are comfortable & trust your dr. I would say to never embolize with a gel substance. Make sure they use alcohol base. The gel they used on my would not dissolve. That’s why I had such a huge wound & now a scare. It looks like I suffered from a severe burn. I wish you well. What part of the country are you from?
Thank you for your story. I am from New Jersey. My issue with doctors was most the doctors I saw said they weren’t equipped to deal with a complex AVM like mine. There was only one in NJ and the other in NYC, which had to pay OOP to see. They both said the same thing so I went with the IR that was covered under my insurance. They had a multidisciplinary conference and said that using the Onyx was my best bet because the ethanol treatments can have bad sides effects on other areas of the body. I’ve worked in emergency medicine for years but was completed dumbfounded by my own diagnosis, so I trusted the experts. Were your prior treatments using ethanol? Do you know whether they’d be able to use ethanol now after having an Onyx treatment? How big is your AVM? If you don’t mind me asking.
Welcome to AVM survivors! You’ve found the right place, joined the right group and posted in exactly the right place. Your initial post has gone out to all of the Extremity team and hopefully you’ll get more shared experience.
I have a brain AVM and (in general) the treatments appear to be different. It does seem to me that an ethanol based embolization or a sclerotherapy is more often used on extremity AVMs but it also seems to me to be very difficult to get in control of an Extremity AVM. I hope others can share their experience.
It’s really good to have you on board!
Richard
Hi Jamie,
Thank you so much for sharing your story. My son was born with an AVM on his thumb/palm at birth. It was noticeable but small when he was born but has grown as he has grown. His team of doctors (we live just outside of Philadelphia so he goes to the AVM clinic at Children’s Hospital of Philadelphia) sees him often and has recommended no surgery/embolization as of yet due to the high risk of complications. In October of 2022, his AVM had an open sore towards the top of his thumb. It was very painful and he was put on a drug called Mekinist. Mekinist is usually used to treat a specific type of lung cancer but studies have shown that it can be used to treat certain types of AVMs with a lot of success. My son’s team believes that he has a MAP2K1 mutation which causes his AVM, and the mekinist targets AVMs with this type of mutation. He is on a very small dose (.4 mg every other day.) Since he began the medication in October of 2022, the AVM has not grown and his pain level has decreased significantly. We are hoping to keep him on this medicine for as long as possible. It is quite expensive, but many patients can apply for assistance through the pharmaceutical company. We have done that and have been approved. The medicine is shipped to us monthly at no cost. I am not sure if your AVM is due to this type of mutation, but I wanted to share the success we have had with it to the entire community. I wish you all the best!
Philippe
Thank you Richard. After doing my research on Onyx, after all the complications 
I found that most of the success on avms were in the brain of spinal cord. While extremity avms there was always complications. I was so lost at the time of the diagnosis, and frustrated being sent to doctor after doctor, I just went along with what they said since they said the ethanol treatments can result in long term damage. I thought sclerotherapy was mainly used for brain AVMs?
Thank you Philippe, that is great news about your son! I can only imagine what it’s like watching a child go through this. I do have a genetic mutation, Noonans syndrome, specifically the RIT 1 variation. It was a complete coincidence it was found since I don’t have the physical attributes of someone with Noonans. My variation causes cardiac problems, like my hypertrophic myopathy, only 4% of people with Noonans have this variation so there is very little research and no connections with AVMs yet. There is still a lot to be done with a genetic doctor to officially put the variation and AVMs together. I did not have the other variations that usually cause AVMs though. I have to find another IR to take over my care. But when I do I will mention this! Thank you!
I am not really any more expert than you other than I’ve read thousands of posts on here. The impression I get is as I said: ethanol embolization seems most often used in extremities and sclerotherapy perhaps equally so. I also know of bleomycin sclerotherapy being used in facial patients.
I don’t know why there are these different modalities, though my own personal theory is that outside the cranium, everything is very mobile or is liable to the bumps and bangs of normal life and therefore may require different considerations than something locked in a bone dome.
I’d definitely recommend finding an expert you are more comfortable with to go forwards.
Very best wishes from me,
Richard
And I’d also bring these conditions to your attention: Why arm and leg AVMers should know about Klippel-Trenaunay and Parkes-Weber Syndrome
Best wishes,
Richard