AVM Survivors Network

How to talk about your avms?

Im curious about something that has been happening often since I found out about my sons avm, many many people ask me about it, and although i researched it many and many times, I still dont quite understand, and its hard for me to talk about it, what is an easy way of explaining to someone about AVMs.

Hi FishersMommy This is something I also struggle with greatly. I find it really difficult to tell people about my AVM generally. Firstly its because as soon as you say the word 'brain' they seem to stop listening and assume you have a brain tumour. Secondly people are often really shocked, perhaps because I suffer few deficits externally. I mean if someone is in a wheelchair or uses a cane for example you get a sense of a medical condition. To look at me you wouldn't know at all. And I find that difficult as I actually want to talk about it. Its just one reason why I find this site so invaluable. That said though, like you I have never found an easy way of explaining AVM without going into more detail than perhaps is required. Best of luck with finding the information you need and I would also be interested if anyone has any advice in this area.

I took the simple explanation my doctor started with and brought it down a little more.

I explain my AVM as a blank spot in my vascular system. Capillaries convert the pressure between arteries and veins from high to low. Since this blank spot didn't develop any, the arteries and veins connect directly. The high pressure arteries are connected to low pressure veins and causes havoc.

Mine was spinal so it created high blood pressure in my spine and eventually hemorrhaged.