Luckier than Other Family Members
Chuck's story

My name is Chuck Knorr, 54, the 8th person on my father's side to have AN.

My first AN was supposedly the size of a large walnut.  In 1978, as I was going deaf in my left ear, I got tired of the regular doctors telling me I was "deaf in my left ear"!!!! That much I knew, what I didn't know was WHY? Wasn't until I saw a real live audiologist that the wake up call went out loud and clear. Within one week of having the test done I was scheduled for surgery.  Here are my symptoms that I've looked up in my medical history:

[This] male has an eight month history of impaired hearing in the left ear. Actually he may have had impaired hearing longer than that, this was the first time he became aware of it.  Had tinnitus for four months. Headaches for eight months, primarily in the left ocipital and suboccipital area. Several months he has had mild impairment in balance.

Even before the advent of computers I knew what to expect when they diagnosed my AN as I had many family members to look at.  They were worse off than I was, yet it was humbling to know that this is also what I could end up looking like.  Although somewhat unsettling, it was a definitely a learning experience for me.

The AN took doctors 7 hours to remove. At that time I was a minister with the Jehovah's Witnesses and opted to have bloodless surgery. This simply means that no blood is hung, as in transfusions, or administered by IV, although many times Ringer's Lactate is used as a bloodloss volume expander. This comes about after the surgeons recognize the patient's beliefs and the patient in turn releases the hospital/doctors from any liability.

It was the first bloodless surgery for the surgeons, but recovery time was less than other patients they had. They did a "hook-up" about a month later which gave me skin tone and eye movement.  The paralysis on the left side of my face made my mouth droop on the side and when I tried to sing again, or even talk sometimes I would have a little lisp -- it reminded me of Bing Crosby! Although I met him in California, I never knew I would be referring to him in this manner much later in my life.

At family reunions I often felt bad setting across from some of the others with the AN's as I looked pretty good in comparison. My father's mother died from "ruptured brain tumour"! His sister, her two daughters, and one of their kids also had the same thing. Most are either dead or totally deaf by now.

Five years ago, I contracted Guillian Berra Syndrome.  It's a condition usually caused by a virile infection, which somehow affects the Myelin coating around the nerves and causes some of them to stop functioning. Some have it so bad they end up in an iron lung, with years of recovery. Mine just left me unable to move my legs and arms and was working its way into my lungs when the progression stopped and began to reverse itself. The only symptom I have left are two numb feet from my ankles down and my hands are very sensitive to heat and cold and tingle allot.

The combination of Guillian Berra and Acoustic Neuroma has led me to do a lot of research on many subjects that affect my life and health.  Medically I recovered well, but personal problems led to a divorce within a year and a loss of my congregational priviledges.

I was fortunate to have survived long enough for the original tumour to grow back and bring with it another one of the "good side." Being deaf in my left ear and having no balance since contracting Guillian Berra Syndrome, I opted for FSR.  I was treated this past summer with the Peacock system to both ANs, under the direction of Dr. Mei-Chang Cheng at the Robert Packer Hospital in Sayre, Pa.

I went there each day for 6 weeks, 2 hour drive each way.  I was accompanied many times by relatives or friends and made special arrangements getting off work.  Each day,  they laid me on a table and had a huge machine rotate around my head while the techs scattered!  A "battle plan" was computerized from a Catscan and fed into the radiation machine, which emitted low doses at specified places in attempts to stop the bilateral ANs.

The latest MRI done this month shows no growth. For the most part my health is good, considering all the trauma of the past 20 years. Once I have the gold nugget implanted next month to eliminate some of the pain which has been going on for years, I will only be left with the ringing in my ears and imbalance which is being aided by a nice walking cane.  No longer a Witness, I facilitate a Recovery page for an addiction problem and work full time in a hardware store.

If you have any questions, please write, I like getting mail :).

Chuck Knorr <lampligh AT uplink.net>
March 1999


Update

(1/01) My balance continued to worsen, leaving me with no choice but to seek some disability. I began receiving Social Security Disability in January of 2000, mostly for the NF2's, but also because of the combination of the acoustic problems, the residual damage of balance and the Guillian Berra Sydrome aftereffects.

I have 5 semesters of lip reading at the local University and have taken some sign language classes as well. I was priviledged to accompany my cousin to the House Ear Institute in LA last summer for her annual "tune up" on her ABI.  Biggest change has been that I finally managed to get my own house, and have found the freedom not only challenging, but also enlightening, as my creative side has manifested itself in making walking sticks and canes for friends.

My medical follow up on the growth/shrinkage of the two tumors is on hold until I get Medicare; I have to be on Disability for two years before I can get any kind of medical insurance.

Back to Chuck's entry to Patient Directory

Last Edited: Wednesday, October 30, 2002