AVM and diagostic

I am an AVM survivor mine was behind my left ear and involved a major artery and a major vein. They had to be treated with radiation since they were to huge. Now I am left with epilepsy because of this. Has any one ever heard of this? And the Dr (neurologist) says that I am dying from the radiation to boot.

Welcome to the site, its great you’re here. I found out about my AVM due to a bleed and have had gamma knife, still in the process. I’ve heard of a wide range of potential side effects from radiation, based on a variety of factors such as size, location etc…I’m certainly no expert. My understanding is that epilepsy is a more common side effect of injury and treatment, often in my readings associated to scar tissue. I would be having a heart to heart with my Dr if he told me I was dying due to the treatment and be well prepared with a significant list of questions for which I would be seeking some answers. Take care, John

Susan,

Welcome to the site! I hope others may have similar experience that they can share with you. Albeit you’ve had treatment with the doctor you’ve been seeing but it might be worth getting a second opinion on the state of things. I think a number of us can vouch that in quite a few cases, the number of opinions you get are pro rata to the number of doctors you see!

Very best wishes

Richard

Thank you for answering

Susan