Mary-I read your posts and it seems you are going to an excellent resource-Dr. Barker from Mass General.
I too have headaches and get tired, probably from my brain compensating/not compensating for the balance nerve. I almost always have the earringing. I am starting to have to guard against depression and inactivity. I am sick of the "wonkiness."
I too was told that surgery or treatment may/may not lessen the symptoms. However if the thing is growing, the idea is to stop its further growth. Mine went from 1.1 to 1.4 cm in length in five months. I am going to do either surgery or radiation, but which? I'd really like to be more symptom free but there seem to be no guarantees.
Yet many folks have had various treatments and are living quality lives.
I'm done with watch and wait. But my son gets married September 7th so I want to be as present as I can be for that, and then I will act. Although, if I knew I'd have few side effects, I'd do this next week!
Millie