When an AVM has shrunk

I have an AVM that has caused two bleeds, both life threatening, the first one I actually coded, the second one I was life flighted to a trauma center and have no memory of. Now, the neurosurgeon is telling me that it has shrunk so small that surgery isn’t an option and radiologists don’t want to do cyberknife because it is a small target close to the ear canal.

The neuro is saying we can wait and repeat the angio in three months. I am saying we need to attempt radiation because I have spent the past seven years wondering if it would rupture again and now it has. I feel like I’ve been handed a death sentence if they don’t attempt to get rid of it. I was lucky that my kids are attending college nearby and live at home. I layed there for nine hours awaiting someone to get home, unable to get help because it caused a stroke. The next time this happens I probably won’t have anyone coming home as I am divorced and the kids will (hopefully) have their own lives and homes.

Any suggestions? Should I continue to push the neuro to find someone to perform cyberknife or gamma ray surgery?

Thanks in advance, and I’m glad I found a group that understands.

Shelly, I would recommend getting a second, or even 3rd opinion. Get your records from your neurogurgeon and take them to another doctor. I understand your fear and it is definitely worth at least a second look. Good luck!

Shelly, As Trish said, I would get a second opinion. Trish actually lives in North Carolina and would be a helpful friend. Keep the Faith and let us know if you find help from getting a second opinion!

Thanks for confirming my thoughts that persuing this is reasonable. My neuro is checking other facilities. I understand his not wanting to perform an open cranial surgery, now it is just getting a radiologist on board. I am currently dealing with the hospitals in VA, but I will ask him to network with NC if need be. He is a graduate of Duke, so I know he has some networking capabilities here. Thanks again. :slight_smile:

Shelly, I didn’t even realize you were in Roanoke Rapids. There’s another suvivor here from there. Sarah Thompson. I’ve met her and she’s wonderful also. Let me know if you want the name of a great neuro surgeon. Mine went to Harvard (noth that that means anything) but he’s wonderful and he saved my life!