Hello, I’m also thinking of stopping treatment. I have AVM in my left foot (diagnosed in 2006), and have had several embolisations on and off since 2010. The treatment always went well–as in, nothing bad happened, and it did work on the target area, according to the scan result. But I’ve come to feel that the post op discomfort and having to use crutches for more than a month (hurts my wrists and the other foot/leg/knee) are not worth the trouble, because it’s not like the pain from the AVM itself disappears, and it grows in another area, like it’s a cat and mouse game.
My surgeon said some time ago, the overall size of the thing had reduced over the years, and I should keep at it to reduce the chance of bigger problems later in life. But the interventional radiologist who performs embolisation has consistently said, by coming to my bed in the recovery ward or calling me after every session, that my AVM is not something I should aim to fix but learn to live with. He’d basically tell me I should only seek treatment if the pain becomes unbearable. I had long been confused why two doctors who (kind of) work together believe in the opposite. But my surgeon’s story stuck to my mind–that if I didn’t have my AVM under control, eventually it would become so painful that I’d be asking for amputation. So I had a couple more embolisations. The surgeon was the one who started my treatment years ago, and it didn’t even occur to me that I could actually make an appointment with the interventional radiologist in his clinic and ask him more questions (instead of a quick chat when my head is still foggy from general anaesthesia).
I eventually had a proper consultation with the radiologist, who seems well respected in the hospital (everyone, from nurses to young doctors, raves about him), and now I think not doing anything is a good option, at least for now. This doctor said my AVM is unlikely to go away, but it’s mostly venous and therefore unlikely to grow massively or cause things like rupture. He also said every embolisation comes with its own risks (damaging skin, nerves, general anaesthesia going wrong etc), which may outweigh the benefit in my case. He said if I want to continue the treatment, I could, because he can’t guarantee anything either way and the choice is always mine. I haven’t sought treatment for two years now, and the pain level and everything else has stayed the same as it has ever been. So, I’m starting to think, both this radiologist and others on this website are right–AVM in extremity is hard to get rid of, and pain management is our main concern.
I’m incredibly lucky to have access to embolisation for free (because it’s performed in the public hospital), and not having to worry about fees beyond a few hundred dollars for a pre-op MRI test gives me the peace of mind, if I want to resume the treatment. I guess there is no ‘final decision’–just an ongoing process of reflection, strategising and keeping an eye on any change?