Hi everyone, I’m Evelyn who currently is based in Sydney Australia. It’s great to be in this community.
I was diagnosed with AVM in my right hand (palm) when I was 23 years old. My AVM is about 2 x 3cm wide. I had my first coil embolisation when I was 25 but it didn’t go well. My symptoms don’t improve at all, with warmer temperatures in my right hand, slightly more swelling, and has started to gradually expand to my ring and little fingers. And my right feet started to feel warmer than left feet - I consulted with two different specialists and they both said the embolisation I did won’t cause the symptoms in my right feet. But I do feel the difference between my right and left feet. I’m afraid that if there’s a possibility that another AVM may grow in my right feet, but I’m not sure. The symptoms in my right feet is not exactly the same with my right hand.
I don’t have a Medicare in Australia as I haven’t had a permanent residency (PR) visa yet. I may get it in the next 3-5 years. The specialist I consulted with is Dr Tim Harrington in Sydney. He said my situation will tend to progress, especially it has already started to expand from my right palm to the two surrounding fingers. The procedure will be quite expensive if I’m not covered with Medicare. Also, he said that there’s significant risk that my two fingers may be damaged - I’m very worried about this risk as I’m only 27 and I don’t want two of my fingers might become necrotic. I’m not sure if I can wait until I get the PR or should I go ahead and do another embolisation.
Hi Evelyn,
I’m sorry you’re going through this. As a fellow extremity AVM sufferer, I can sympathize with stressing having to make decisions and really not knowing if they’ll work. I was diagnosed at 31 with my AVM in my left calf. The first embolization didn’t work and caused a large necrotic wound on my leg, I also developed CRPS, I don’t know if youre familiar. I’m not sure if you’re experiencing worsening pain with the swelling. But CRPS is a crazy disorder that happens after surgery or trauma to a limb, doctors don’t really know why it happens to some and not others but it can also develop in other areas of the body that were not directly effected by a procedure because it has to do with your spinal cord. I went on for a while undiagnosed and had really weird symptoms and a friend that’s an Er doctor was the one who caught it. It explained a lot of weird things happening. Not saying you have it, but it’s something to look into if it’s not an AVM.
Welcome to our community. As you see from JamieC we have a lot of experience here in all things AVM. I had a brain AVM, so vastly different than the extremity AVMs which sure are a challenge. One thing I always say about decisions in the AVM world, we need to be comfortable with our decision, we often won’t know if it was the right one until after the fact. Take Care, John.
Your experience is very much one shared by our @Extremity community. I hope others will read your story and be able to share their experience, too.
My belief, having read a lot of the stories on this community over the last several years, is that extremity AVMs are very difficult towards impossible to tame. It seems likely to me that you’ll be fighting it over the long term. Getting onto a medical support package when you’re able to will be important.
Thank you Jamie, that’s really helpful information to know. I’m sorry to hear that you’re going through this and the CRPS. I haven’t experienced swellings and pain in my foot but I will definitely keep an eye on these symptoms. I hope you are all well
