Surgery took me in a new
This month is the 10th anniversary of the surgical removal of an acoustic neuroma at the hospital of the University of Pennsylvania.
Ten years ago, I was a 25 year old grad student in history at Penn. After a few months of facial numbness around my left eye that I thought was related to a sinus infection, Student Health referred me to the neurologist, telling me to go straight across the street right away. The neurologist sent me for an MRI immediately. When I emerged from the dressing room, the doctor sat in the waiting room, pizza in one hand and MRI in the other, and said, "Good news! You don't have Multiple Sclerosis. It is just a brain tumor." My tumor was on the right. The 7cm-plus tumor was pressing on my brainstem, smooshing the facial nerves on the left against the inside of my skull.
I spent the rest of the morning being admitted, sneaking home (a 10-minute walk) to get pajamas and lots of books to read, and calling my family. I met with lots of residents who asked me to remember lists ("Spruce Street, Baseball, and the Palladium"--still remember then after ten years...), or to touch my nose then touch their moving fingers.
The surgery on February 16th lasted almost 24 hours. I still think they must have ordered out for pizza and a movie. One of my friends, a 4th year medical student, caught some of the surgery on closed circuit TV.
After a short stay in the ICU, I moved to the neuro floor and worked on recovery. I had the whole range of side effects: paralysis on one side of my face, wide-open eyes, serious nystagmus, difficulty with speech, difficulty thinking with words, difficulty reading, handwriting illegibility, difficulty walking, etc. Because of my balance adjustment, I sometimes felt like I was being dumped out of the bed and held onto the rails for dear life. Eventually I went to occupational therapy and drew lines between pictures and words. I went to physical therapy and practiced walking halls with patterned floors, and then later, up and down stairs. And the nutritionist kept sending up cases of Sustecal, the most foul drink in the universe, despite the fact that I was eating just fine.
9 days later I was given a pass to go out of the hospital: My family and friends helped me trod slowly through the snow (with a cane) to the garden show at the convention center next to the hospital. I still have the postcard I sent to my grandmother--scribbles that don't even seem to be words, with a translation filled in by my mother. It sounds like a 3-year-old composed it.
After a bit more than a week, I was signing discharge papers. As I bent over to try to sign my name (a great difficulty), a drop of spinal fluid dripped from my nose onto the paper. My neurosurgeon slid the paper away from me, mumbled something about culturing it, and told me to take off my shoes and lie right back down. I spent the next few weeks getting spinal taps, a long-term tap that stayed in my back, and IV Vancomyecin for meningitis. Meanwhile my main neuro resident went bungee-jumping in Australia.
Eventually I was released with a small CSF leak that refused to heal outside the hospital. On April Fool's Day, my ENT told me I'd be coming back in for a second surgery to correct the leak. After this surgery, I had a more serious case of meningitis and more Vancomyecin. I eventually went home with a IV line in my arm, a refrigerator filled with IV antibiotics, and no remaining veins.
Well, ten years have passed. My boyfriend at the time of surgery, a first-year medical student at the time, is now my husband. He is a family physician with a faculty appointment. (He especially loves to teach medical students how to do spinal taps.) We have a 3 year old son, Abraham. The other day Abe told our neighbor about MRIs and their miraculous ability to photograph your brain.
I started learning American Sign Language soon after surgery, partly to help regain control of my right hand and partly to help me deal with my now-merely-decorative right ear. I eventually accepted a tenure-track job at Gallaudet University, a college for Deaf students in Washington DC, where classes are all taught in Sign. I'm finishing a book that grew out of my dissertation on deafness in the 19th century South. It is due at the press in three weeks.
There are things that remind me of my surgery every day. The lack of a vestibular nerve still makes it hard to walk in the dark or on the snow and ice. I get frustrated in loud parties when I can't follow conversations. My handwriting is only barely legible. Sometimes the person cutting my hair will ask why I have a hole in my head. And I am totally amazed when two-eared people can tell from sound where they dropped a penny. Best of all, I have a funky talent of closing one eye when I pucker my lips (apparently my nerves regenerated in a less-than-typical way). I still drip (spinal fluid?) from my nose upon exertion or in hot weather, become nauseated, and get a headache. I keep a copy of an old Calvin and Hobbs cartoon strip in which Calvin sneezes and remarks "Cool, spinal fluid."
This year on my anniversary, it snowed all day, starting right about the time I was wheeled into the prep room ten years ago. The snow didn't stop until 24 hours later, about the hour when I was wheeled into recovery. We have about twenty inches of snow on the ground.
Since my surgery, I've met many people who've had acoustic neuromas, some quite small and others more like mine. Seeing what kind of experiences they've had, I feel so lucky. Despite the fact that I had a very large tumor and a whole lot of immediate side effects, two years after surgery I was -- well, not at all my old self, but a new and whole human being living a new kind of life with new expectations, new limitations, and new goals.
My acoustic neuroma and the surgery changed my life, in ways both negative and very positive. In addition to deepening relationships and changing my academic interests, my experiences allowed me to understand much more about the experience of health and disability. Surgery took me in a new direction, one that I never expected and one that has been filled with surprises and delights. When one has an acoustic neuroma, life may not be the same, but it can take you on an amazing new path.
Hannah Joyner <hannahjoyner1 AT aol.com>
To Hannah's entry in Patient Directory
Last Edited: Wednesday, August 13, 2003