Dear ANers,
I didn't know where to post this but thought the Community was the best place. I had my second post surgical MRI on Tuesday and took the CD to the wonderful Maureen Moriarity at Georgetown and she went over the results on the computer one pic at a time. She told me how beautiful my brain looked (Don't want to be a Beautiful Mind, if you saw the movie). She told me there was not tumor there and I was fine.
At this juncture, I have some thoughts of the AN experience. I was fortunate to have a fantastic ENT, Dr. Douglas Feldman when I thought I had impacted cerumen (wax). He said all was fine but to take a hearing test which showed a 35 dB hearing loss. He sent me upstairs where they worked me in for an MRI at the end of the day on Friday afternoon. On Tuesday, another doctor told me that I had this AN and not to worry because it was benign. I wish that I had listened to him because I rushed in to things and surgery before I understood the full picture. I got four opinions and nobody was in a rush but Hopkins that said I might have a stroke. They also recommended Retrosigmoid but didn't use the word and just said cut from the back of the head. Dr. Friedman said Middle Fossa and so did Univ. of MD, the doc at Cornell to which I always go to first because that was where I was born, said all the proper things like surgery, watch and wait and radiation. He left the choice to MOI!!! Because of Hopikins saying I was at risk for stroke, I went with them. I didn't know they were doing the retrosigmoid approach and had never heard the word before. I went with them and have been sorry ever since. I've gone through the headaches, treatment with a neurologist, occipital nerve blocks and near dear experience at the Cleveland Clinic.. I found Dr. Ducic and Myofacial Release Therapy at the recommendation of the wonderful Maureen Moriarity. I am much better now and am on Disability Retirement. I am still getting Myofacial Release Therapy for the pain in the neck and shoulder and Botox for the uneven shoulders and neck pain. It's a long recovery from surgery especially now that I know that I have Ehlers Danlos Syndrome. I wish that I had gotten Middle Fossa back then or even Cyber Knife at Pittsburgh with Dr. Kondziolka. I've loved vein a member of the Forum and I wouldn't have met all of you or gone to the Cincinnati Symposium had I not had all this trouble. Life's gifts come in strange packages and I am glad now that I have all of you in spite of the pain I've been through.
Hugs to all of you,
Mei Mei
