After surgical removal about a year ago, my leg AVM is back and my primary care is suggesting embolization. But we are BOTH unsure if its necessary. The pain I have is tolerable. I guess what I’m asking is, when and why did any of you decide to do the embolizations. Is it dangerous to leave an avm untreated? Primary care says only because of chance if rupturing since mine is in the muscle and not doing much but causing pain. It seems that many have had complications after embos and I’m afraid Dr. Rosen will say I need that treatment too.
Are you wearing compression garments to help manage the pain, Mandapanda? There can be heart issues from avm shunting -- high cardiac output that can lead to congestive failure. I'm sure Dr. Rosen will let you know if this might be an issue for you.
I am not wearing them, I will get one and try it. I just got a call from Rosen’s office that they have to work on an out of network approval because they do not accept Emblem Health plans anymore. Thank your for your input Dancermom!!
Talk to moderator Eileen; she can tell you more specifics about compression garments.
Hi, I have AVM in my leg as well that I've been putting off because I don't want the embolization done. But I had it done to my foot and I won't lie it wasn't fun but I'm thinking that had to be worse since it was the bottom my foot. I'm going to make appt with Dr. Rosen and see where I'm at. If you need a partner to go through this with let me know.
Some have complications after embolizations and some don't. You really have to talk to an expert like dr Rosen. Because every AVM/VM is so different (size, placement, VM or AVM, size of veins and arteries involved), its not possible to conclude that treatment is either good or bad. I know how frightening this process is, and the best way to deal with it is to surround yourself with doctors, ones who are experienced and have dealt with extremity AVMS before.
Its not necessarily dangerous to leave untreated, but as dancermom points out there can be heart issues that have to be considered. This can be tested.
I hope you find the right solution for you!
All the best xx LeaMi