Has anyone stopped treating their AVM AMA?

And if so, what have the consequences been? I’m going through my third embolization and just like the previous times I’m in excruciating mind searing pain with very little relief. My doctor told me that without treatment I would probably go into heart failure and lose the ability to walk on my leg since my AVM is so large and complicated. But I don’t know if I can keep doing this I’m suffering and the embolizations are wrecking my body, causing sciatic nerve damage/pain and causing one leg to become longer than the other therefore causing hip pain. I’m too terryfied to get another emboization but I’m terrified to stop treating it. I don’t know what to do but I feel like I’m going to have a mental breakdown. My doctor said approximately 60 % of my AVM is treated and that after 2 or 3 more big prodecures like I’ve already had we could probably not treat it again for a few years( since it doesn’t stop growing). I don’t know if I can do it and my body is getting worse and worse with treatment.im scared and in so much pain

There are definitely some folk in the @Extremity group who have gone through the same pain as you and the same challenging questions.

The ones I’ve seen principally talking about it are those who have an AVM in their leg or foot, where I guess the vessels are (in the leg) so large as to be difficult to deal with and so troublesome – very much the same as you.

I hear how difficult this is. I absolutely hear you and honestly, I take my hat off and bow. I don’t know your anguish but you have my greatest respect and if I can help a little by bringing some of the extremity people to hear you and talk to you then I hope it may help.

Very best wishes,



Thank you I really appreciate that


I have been on the waiting list for my first embolisation for over a year.

Originally, my doctors didn’t want to treat it. They said that, as it regrows, there was no point putting me through a risky procedure for no reasons.

However, when they realised that my heart was enlarged and under strain plus my symptoms (pain/mobility) were not benign and getting worst, they decided that there was no choice but to try and relieve some of the pressure on my heart. They still don’t know if it is going to work due to the speed of the flow (letters are full of try/ attempt/ hope).

All of that to say, have you got any heart issues /symptoms? What is the point in doing the operations now if it will regrow? Are they the same doctors who want to give you scans every 2 years at the age of 20, just in case you get a stroke? And lastly, sorry for being cynical, are you in the US where all those procedures are charged to your medical insurance?

Now I am not a doctor so y advice: get a second opinion. Lots of pelvic avm members in the US can recommend doctors near you. There was one in New York that everybody raved about as he actually obliterates the AVM and does consultation by phone/video, can’t remember his name now.



Yes I’ve spoke to the Dr in New York (Dr.Rosen) briefly and he said that he really wouldn’t be able to tell unless he treated me he said sometimes you can treat it to a point where it doesn’t need it anymore and sometimes you just have to keep getting treatments. They were supposed to call me back months ago but they haven’t yet and I have had too much going on. I was born with a heart murmur and pulmonary stenosis in my heart which were both fixed to my knowledge but I still get tired and out of breathe and fatigued a lot. My doctor’s that treat my AVM did reccomend the brain scan but they are about 3 hours from me so the brain scans are done about an hour away with a genetic doctor.yes I live in Tennessee so I have government insurance until I turn 21 in a few months and I’ve been trying to get on disability so that I will have insurance for long term health care and also my doctors do not want me working and putting any extra strain on my heart.also how old are you and how old were you when you were diagnosed?