Hey Stephanie,
So sorry to hear about your diagnosis. I was also diagnosed with an inoperable spinal AVM in my neck at the base of my brain stem (I posted about it here). It’s scary to consider the treatment options (or lack thereof), and the risk of a bleed occurring over time.
Where in your neck is it located? Depending on the location, it can be pretty risky to treat them since there are key vessels/nerves passing through such a relatively small space. If you haven’t pursued a second opinion yet, I’d recommend doing so for comparing advice and if nothing else, peace of mind with your decision. The Barrow Institute (US) provides a very cost-effective option and has a fantastic team. Feel free to ask any questions in this thread or DM; I’m happy to help as best I can.
Rich