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At 52 I feel 102
Susan's story

I am Susan, age 52 in 2000.  My right-sided AN was found in Nov. 77. It was 3.4 centimeters, wrapped around the brain stem, compressing it. They discovered it and three weeks later it was removed. My surgeon gave me those 3 weeks "to get my life in order and say goodbye... just in case."  I was operated on Nov. 77 by Dr. Geo. T. Tindall at Emory in Atlanta, GA, with the hole behind the ear surgical approach. They told us very little in those days so I have no idea what it was called. [Editor: this is the "suboccipital" approach].

I feel as if they probably used a stone and pick ax to remove my tumor :) After the 2 surgeries, 3 days apart, totalling 24 hours, I was out of it. I couldn't walk, talk, sleep, or eat... I had no help except for the poor nurses. One in particular I remember... or maybe she was an assistant... she was soooo mean to me... I felt shunned by them... I guess they didn't quite know what to do with us AN's.

I stayed in the hospital (due to a medicine mixup... that I was blamed for) a total of one month. My complications after surgeory include headaches, earaches, fullness in ear, dizziness, profoundly deaf in affected ear, loss of balance, visual disturbances, clinical depression, tinnitus, dry eye, incomplete eyelid closure, and more... I can't remember them all.

I was released on Christmas morning. A total of 3 months later I returned to work. I was a music teacher with no hearing on one side, with tinnitus, and a one-sided screwed-up face -- and inner battle scars that I had to keep to myself, like the depression/anxiety that never end for me. It seemed the people's attitude now was "OK, you had a tumor, it's out now, you're back at work, shut up and get on with it. And please don't talk about it or make me look at you it makes me uncomfortable!!"

I hung in there until they decided the meningioma they found about 5 years later was deemed "time to remove".  It was left frontal, 2.5 x 2.0 cm -- not the same side as the AN. It left me with something new... aphasia, which is a nice way to say "out to lunch" most of the time.

I taught for a total of 27 1/2 years. The last 3 were disastrous as it was post meningioma. I am retired now on teacher disablity. At 52 I feel 102, and have no idea what will happen to me. I'm scared. But then aren't we all.

Susan B. <SuzField AT aol.com>
January 2001

Last Edited: Friday, November 01, 2002