I’ve known about the AVM under my clavicle since January '22. Its been super painful since then, lots of days where I cannot move my arm without excruciating pain due to it being wrapped around my brachial plexus. It’s 7x6.5cm and today I finally got an appointment with a specialist. He said that there can’t be a surgery done, as it’s too deep under the pectoral muscle to reach, and would cause damage due to it being wrapped around the brachial plexus. I was hoping to get a surgery, as it sounded like that seems to “fix” the issue. Has anyone else gotten sclerotherapy done? How does it feel? Does it help? He said this was the only option for managing the pain, there won’t be a cure for my case, and that it works for about 70% of people. This makes me nervous as I really was hoping that I wouldn’t have to deal with this for the rest of my life. Does anyone else have experience with this?
Good morning @aimsie639 it’s great that you found us, though it doesn’t sound like the best news about your AVM.
Sclerotherapy is a treatment that seems to be used mostly for people in our @Extremity or @Facial AVM groups. I’m sure that one or two people from those groups will share their experience with you.
Welcome on board!
Hi there, welcome to the community! Unfortunately things can get complicated when the AVM is wrapped around a bunch of other anatomy - mine is in my foot so not the same, but also wrapped around lots of stuff!
It sounds like it might be worth your time to get a second opinion if you have resources to do so. I say that for a couple reasons - if you’re unsure, having more options or a confirmation of the path you need to take can be very helpful. Also, embolization might be another option (my understanding is that’s the usual treatment for these types of avms now but I’m not a doctor) you could look into as well.
Unfortunately from what I’ve experienced and heard from others in the forum, trying to cut it out doesn’t tend to go well. Mine grew back and while that’s not always the case, it’s also not uncommon to my understanding.
I’ve had many sclerotherapies, but unfortunately they weren’t helpful for me. It can be a painful recovery and while it did shrink the tumor some, the pain wasn’t reduced. But that’s just me, hopefully others will share their experiences too so you can have a more informed perspective. Sending support, I hope you find a resolution that works for you.
Good afternoon and welcome!
I’ve have sclerotherapy a few times for an AV in my right arm. They first treated my hand - I still have a scar from the band they put around my wrist to control the blood flow and focus the sclerotherapy alcohol. Afterwards, there was quite a bit of swelling, and pain, more than anticipated. It took several weeks for the swelling to go down. The end result was pretty good as the veins did shrink.
My understanding is that doctors use a less painful chemical these days for scerlotherapy. Please let me know if you have any questions. Wishing you all the best.
Hi @Carly I read that you have an Avm in your foot, I have one in the right side of my groin, and my 8 year old has one on her right foot. What age were you when you were diagnosed? Currently my daughters doesn’t hurt her but I’m worried the pain will come eventually with age like mine did! But the specialists won’t treat her. I had an op on mine last year and thought I was out of the woods managed to live a day without taking pain meds so we tried for our second child and 20 weeks into the pregnancy I have multiple clots in the right leg injecting blood thinners twice a day the pain is beyond! I fear the clots are from the Avm growing back
Hey there Mels,
Sorry to hear of yours and your daughter’s troubles. I had a rough road to diagnosis, lots of incorrect diagnoses and gaslighting about the pain - I wasn’t diagnosed until about 15/16. I believe the pain started for me somewhere around 8/9. Why won’t they treat her? Where in her foot is it?
I may have to eat my former words too. Long story short, I had to see a bigshot plastic surgeon for a different but casually related issue and he believes he can remove the majority of the main mass and relieve pain. I wasn’t interested, and was talking with my IR about trying belomyecin but they changed their mind (too much nerve involvement makes it too risky I guess) and are now saying I should think about giving surgery another shot.
All that to say, I hear you. Taking care of yourself with one of these can be so damn difficult. Throwing clots is a scary thing. I wish I could offer more advice but I’m feeling pretty lost myself at the moment as to what to do. I’ll keep you and your daughter updated and in my thoughts.