I foolishly stopped going to followup MRIs as for the first six years there had been no change. I was going through some life changes myself and the MRI slipped my mind. I am having quite a bit of tinnitus and my hearing aid doesnt help, leading me to believe there has been changes in hearing.
Dr. Loeffler at Mass General stated I would not be a good candidate for proton beam or gamma knife since that may swell the tumor and exacerbate symptoms for a year or more until it reduces in size. I was hugely disappointed in this.
I am finding it very frustrating finding someone who will be able to assist me in symptom management. I've been doing it on my own. I met with my PCP the other day and she is assisting with referrals to second opinions.
The frustrating thing is that Dr. Loeffler stated my vestibular nerve was cut during the last surgery. My recollection from my appointment with the neurosurgeon was that there was vestibular nerve left. The neurosurgeon office is researching the surgery notes (change in computer sytem makes it tough) to figure out what happened exactly.
And why, if the vestibular nerve was cut, am I having vertigo and balance issues? UGH!!