Hi my name is Menachem I was diagnosed with a Avm in, my chest it cussed me strong pain and blood pressure and heart rate problems
First my Dr recommended to do sclerotherapy but it didn’t help after that the Dr told me that she can’t help
So I want to a vascular Dr
I had avm excision done but after 1and 1/2 it started to grow back
Anyone with a similar experience?
Welcome to avmsurvivors! I’ve moved your post to your own topic and put you in the pulmonary AVM category as I expect our other @PulmonaryHeartHHT members may have more in common with you than some of the brain AVM members. We definitely have a number of people who have an AVM in their chest, though you may be the first with it in the chest wall.
Wishing you the very best,
Richard
Ty I hope that someone will be able to help me out
But mine as I know for now is not pulmonary is just my left chest wall mabey I need to do some more testing
T
Understood. I’m still expecting you’ll find more friends among maybe the pulmonary folk, the @Extremity or the @PelvicAndUterine folk. Sclerotherapy seems to me most often used by doctors for the extremity group and you may have some common trouble with the pelvic team because of the size of the vessels involved.
I do think you’re pretty unique, though! It’s not best to be unique in these things but hey, you can tell your real world friends you’re among the rarest people I know!
Hoping we can find you some friends with a bit of common ground.
Very best wishes,
Richard
N.B. most people respond over a period of a week, not an hour, so don’t worry if it stays quiet for a few days.
Hi Menachem
I don’t have any information, as my daughter has a brain AVM, your name stood out and I just wanted to reach out and say this is a great group for support.
You should find the right people to direct you to the right drs.
All the best
Avigail’s mother (from E”Y)