Julie, slskckjebw has a good suggestion. If this is really ON (which it sounds like your doctor suspects), the lesion should show up on the orbits. However, I think it would really still be a good idea to get your eye checked out by a neuro-op, even if you have to travel a ways to do it but at least this will give you a jump start. It sounds like your eye doctor knows it's ON but doesn't feel like he's equipped to treat it (or decide whether or not it should be treated).

I started out by going to my regular ophthalmologist -- thought I'd be walking out with eye drops (!) but instead, I walked out with a referral to a neuro-op. I'm so sorry this has dragged out for you.