My Life Spinning Out of Control - Acoustic Neuroma

I owe my life to a man I’ve never met, a Swedish physician and Professor of Neurogurgery, Lars Leksell.  He and his associate Borge Larsson developed the concept of radiosurgery in 1968 that saved and gave me the quality of life I have today.  This medical miracle was perfected in 2006 and has made what used to be hours of invasive surgery and months of rehabilitation turn into a short out-patient procedure. 

Five years ago I was driving along a suburban street in Houston preparing to make my last flight to California as a Texan. Two days later I would move to Sonoma to join my three children and their families ending a long sad marriage to begin a new happy existence.

Suddenly I couldn’t hear out of my right ear.  It sounded like I was in a vacuum or underwater.  I tested by thumping and scratching my right ear and tried to listen to my cell phone. Nothing! After a few hours of not hearing I made an appointment with my ENT doctor. 

I announced my self diagnosis to the specialist explaining I needed some kind of spray to clear my blocked sinuses before flying the next day.  The doctor, in turn, informed me that I did not have a sinus problem.  Instead, I had “sudden hearing loss” which is a very dangerous symptom that should never be ignored.

After a few in-office tests I was given several prescriptions to treat what might be a viral infection or ear fluid problems.  I was to rest and not fly for at least 3 weeks.  Woops!  This was more serious than I thought.

I began taking the 26 pills a day and felt fine.  My hearing began to return to my right ear.  Yes, I was definitely getting well, or I thought I was. Then the world started spinning and tilting. To get my balance, I had to hold on to nearby walls and lean into them. It was scary but I reasoned it was a reaction to all the medicines. 

I called the doctor and was told to go right to bed and not to get up. He scheduled an MRI for the next day.  That was the first time I considered this “sinus problem, turned to infection” might be something significant, dangerous. Once rested, I felt pretty good.

My friend drove me to the hospital where I had the first of what was to be many MRIs. My curiosity about the process overroad my fears. It was pretty fascinating to be put in a tube where magnets produced a three dimensional image of my brain.  I, a person who usually assumes a bump on a finger is a life-threatening cancer, wasn't worried until afterward when I asked the technician what he thought about my test. He looked at me and said, "Oh.... I don't comment on test results. Your doctor will review the results and get in touch with you." Not, "It looks fine to me" like most technicians say after tests.

By the time I got back to my friend's home where I was staying, my symptoms had lessened and I felt pretty good. However, the phone was ringing. My doctor asked me to sit down and told me the bad news.  They found a brain tumor called an acoustic neuroma or schwanoma.  The great news was that because of the shape and location the medical experts thought it was benign.  That was good news, benign. I didn't fully appreciate how important that one little word would be.

The following days were frantic, frightening and filled with medical appointments. I researched everything I could find on the subject. Regular surgery would be very dangerous because the acoustic nerve, where my tumor lived, is located next to the brain stem and is, I quote, “not only one of the most exacting and laborious, but also one of the most dangerous and unpredictable operations in the entire neurosurgical repertoire”. Having an exceptional neurosurgeon would be a must. 

The initial recovery period would be at least six weeks with ongoing physical therapy to regain whatever speech, balance, or movement problems occurred.  If anything went wrong I could have life long problems including paralysis or an infection could develop causing death. The flurry of activity kept me from spinning into panic or waves of self pity. I had some time to research. This wasn’t an emergency.  Unlike malignant tumors, benign tumors grow slowly, and mine was still small. 

I was given the go ahead to continue my move to California.  I gathered names of specialists across the country finding the most renowned acoustic neuroma surgeon in Los Angeles. Dr. House had improved the surgery technique in recent years resulting in a change from an 80% mortality rate to 5%.  I sent my records to them, got a patient number and set an appointment.

Acoustic Neuroma Overview