I hope that this neurosurgeon that you've connected with can bring needed insight leading to effective treatment.
So have you tried U of M? My experience with them has been state-of-the-art and as conclusive as current knowledge allows. Also, communication skills are usually a high priority there. I was quite disapponted at the Mayo Clinic in Rochester, Minnesota, but that was many years ago.
Star Trek nearly spoiled me early on . They pass a probe over you, and you immediately are diagnosed and usually cured! Over the years Star Trek has been wistfully brought up, from time top time, with or by neurology and neurosurgery residents and students.
Incidentally, my last checkup's MRIs showed that my cancer has taken a disturbing turn; it will no longer operable, but it appears to be spreading relatively slowly so far. So I can look forward to between four months and two years before I try a less certain and less potentially effective route than brain surgery, chemotherapy, with possibly another round of radiation, after all these years, if the chemo doesn't work. It's a major drag, but, whatever happens, I've had one helluva run, thanks to the great folks at U of M. Organissimo may be therapeutic too.