Why are AVMs so painful

Has anyone ever had a doctor explain why AVM’s( outside the brain) are so painful? Iam in constant pain from an AVM on the left side of my head, ear and cheek. I had an embolization and surgery and my expectation was that those procedures would diminish the pain but that didn’t happen and the AVM came right back anyway. Just wondered why so much pain? Kim

I'm only guessing here:

I think one definition of AVM blood vessels is that they are weaker and have fewer layers (Plies, like in tires). Vessels in an AVM can swell, putting pressure on surrounding stuff, like nerves. If the nerves are feeling the pressure, I think that = pain. If it happens in the brain, it can trigger seizures. Not sure what happens in exterior AVMs, other than maybe pain.

Hope this helps; by the way, I'm not a DR................

Ron, KS

Ron you are so knowledgeable about AVMs and they way you explain brings a sense of understanding. It is not all medical at all. Miya said her AVM felt like there were people banging in her head. Like a bad drums communicating she told my mom. The pressure was so bad that you could see the heat coming from the top of her head. Now are exterior AVMs formed in places like the back/spine.



Ron, Kansas said:

I'm only guessing here:

I think one definition of AVM blood vessels is that they are weaker and have fewer layers (Plies, like in tires). Vessels in an AVM can swell, putting pressure on surrounding stuff, like nerves. If the nerves are feeling the pressure, I think that = pain. If it happens in the brain, it can trigger seizures. Not sure what happens in exterior AVMs, other than maybe pain.

Hope this helps; by the way, I'm not a DR................

Ron, KS

Kim I am sorry to hear that you are going through the pain. I am looking and asking what can be done to relieve the pain. I hope to hear from some one soon.

Thanks!
I’ve just been around AVMs since 1991, so I’ve read and heard a lot of things. Hope it helps that I can share some of it.

Ron, KS

My AVM was so affected by migrains, they were like twins. But when I did not have a migrain, I still had pain in my head or mild headache. Ithought it was normal until my AVM was obliterated and the headaches stopped (!!). Just like migrains, hormones and other body chemicals can make the blood vessels in your head swell, which is very painful, and since the veins in an AVM usually carry more blood than they should, making them even more prone to being swollen, it hurts in that area. And depending what it squeezes against when swelling can give you all sorts of misery. The pain in my head would radiate to my cheekbones, eyes, forehead. They probably will continue while an AVM is present. The only thing that ended up working for me when full blown pain was Tylenol 3.