Becoming Disabled is no Laughing Matter
Linda's story

I lost most of the hearing in my right ear two years before I had the surgery.   Two different ENT's just said I had nerve damage, and no further tests were ordered.  Then, I began to lose some feeling in the right side of my face, and my right eye watered a lot.  It was decided that I had probably suffered a light stroke at some time.  I was told to take an aspirin daily - and of course, change my work profession to something less stressful. (I was a legal secretary).  I continued to go downhill physically for several more years, had bad balance problems and was quite prone to walking into a lot of walls.

Finally, I got a neurologist to please give me a test to see what was wrong.  He said I didn't need the MRI, but did order a CT Scan. It was ordered without any contrast, so nothing showed up.  One year later, I had quit my job because I was too sick to work and I had no health insurance. I passed out here at my home one morning. Then I got mad and called the hospital and ordered my own MRI.  I used the neurologist's name to secure the test.

When the tumor was found, I was told to go straight up to the doctor's office. He was so cold when he told me  "Yes, you were absolutely right, Mrs. Ellenburg, you suspected a brain tumor, and you certainly have one."  The next thing I remember was waking up on the floor. He could not do the surgery, so referred me to a neurosurgeon.

At first I didn't want to have the surgery, but the neurosurgeon quickly told me that I didn't have any options. The tumor was already pushing against my brain stem.  I was told I would die before my next birthday (three months away).  I had surgery for removal of my Acoustic Neuroma, 4.2 cm, in April of 1995.   The surgery was 12 hours long. The incision is down the back of my head.  Unfortunately, my surgeon failed to prepare me for all the many hurdles I was about to face.  He had said "you may suffer a slight droop or paralysis of the face, dear", but the shock of seeing my face was something else!  My facial nerve was cut and I lost the hearing in the right side totally. 

I don't know what is worse, the brain surgery or adjusting to your new life after the tumor removal.  The surgery was easy enough - heck, I was asleep for 12 hours.   There are simply no words to explain this never-ending nightmare.  I have all the usual balance problems, the nausea that never really goes away, the loss of taste in my mouth, the awful headaches that seem to come from out of nowhere. God, how many horrible outcomes does someone have to live with - does it ever get any better. Five different surgeries, and four years after the tumor removal, I would have to say that it does not ever get better.

I was given no knowledge of what to expect in recovering from this AN and was pretty much in the dark.  I had been to 16 doctors in a seven year period - mostly to find out what was causing my severe headaches. I was always told it was migraine.  I finally got on the computer and found the Acoustic Neuroma Association.  I joined, and the information has helped me a lot.

I still suffer from balance problems - feels like I am a cork bobbing up and down in the water.  I have learned to adjust to it though.  And four years later, my face is still as numb as the day of surgery, it still droops just as bad and I have absolutely no facial movement on the right side. So much for my doctors encourgaing words of wisdom.  I have also had the 7-12 nerve graft, and two years later, no reported change in my face. I have also had two different gold eye weights installed, and removed. The later of which scratched my cornea so bad, that I am now legally blind in that eye.  

I still have not returned to work and don't really have any plans to.  I am on Social Security Disability at present. Its a funny thing, when my tumor was diagnosed, the doctor told me to go ahead and apply for Social Security Disability. My husband and I both nearly died laughing.  I was not going to need that, I would return to work. Remove the tumor, and I will be fine.  WRONG.  I finally did apply for Social Security and had to fight those idiots for over a year before they could decide I was a disabled person...

Know your treatment options, and talk to more than one doctor. A few more weeks, or months, will not likely make a difference to your AN.  I never knew that Gamma Knife existed.  I wish that I had taken the time to explore my options. When you are scared to death, you just want it all over with.

I have started a support group here in the North Florida area. We had our first meeting on March 13, with 14 people in attendance. It was great. 

Please feel free to write. Sincerely,

Linda Ellenburg <DEllen9612 AT>
March 1999

[Editor: Gamma Knife is not an option for a 4+ cm AN.  However, finding a more skilled surgeon would have probably lowered the odds of disability].

Last Edited: Wednesday, October 30, 2002