Eric,
I am sorry for all you have been through, but happy for you that you appear to have a diagnosis. Truly understand - some Dr’s dismissive and another excited. I experienced that as well.
Here is my story, so you know you’re not alone (details Dr. appts as well as one telling me I need therapy, because it was in my head):
A suggestion for you that could make your journey “easier”, there is a Dr’s list on this site (can’t find at moment, or would share) - but try to get an appt with someone who on it that has experience with Eagles. Not all Dr.'s believe in the diagnosis. If you can’t find a Dr. in your area, consider traveling or seeing a Skull Based ENT who specializes in that area of the body (Neck cancers, etc).
Best of luck! Stay strong - you are getting there!