Supraorbital lesion, severe bony destruction etiology unknown

I have a supraorbital lesion that has led to bony destruction of my skull and protrusion of my right eye.  Biopsy attempts (including open craniotomy) have been unsucessful due to severe bleeding associated with touching the lesion even slightly.  What small pieces have been obtained have been benign.  I continue to baffle doctors not only with diagnosing this problem but also with what to do next.  Currently, I am awaitng an appointment with another neurologist to discuss some recent dizziness and confusion that another doctor fears could be seizure related.  In terms of the lesion and bony destruction, surgery is felt to be too risky and is being delayed until necessary.  Are there any courses of action anyone can think of I should try?  I am feeling hopeless of ever discovering what this is.  I have to fight a certain doctor's staff to get me in to clinic (he's supposed to be the best in the area--his customer service though is in the toilet).  I'll take any suggestion because I'm not going to stop until I know I have someone who can at least keep me out of danger.  Waiting until surgery becomes necessary makes me feel like a ticking time bomb.  I think inaction my be just as dangerous as surgery.  Help!