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Learning Process Pays Off
Walter's Story

A success story! I am now nearing four weeks past my surgery at the House Ear Clinic in L.A. (Surgery by Dr Brackmann and Dr. Hitselberger). They used the middle fossa approach, which aims at saving hearing, and this approach was especially beneficial due to the small size and location of my AN. They hit a home run. They completely removed the AN. They completely saved everything about my facial nerves, with not even a temporary loss. They also saved my hearing at the level it was at prior to the surgery. I now have near normal hearing thresholds, perfect speech discrimination, and can hold a phone conversation -- all with the affected ear...

I had originally been referred to an extremely reputable medical center here in the Midwest. I was originally told very little about ANs. I was glowingly told, "If you must have a brain tumor, then THIS IS THE ONE TO HAVE!" They indicated this was a fairly routine surgery, and there was little to worry about. I presume the doctors wanted to keep me calm. The surgery (by retrosigmoid approach) was scheduled for the earliest possible date -- yet it was still three months out! I was told it is a slowly growing tumor, so there is no rush. I naively felt everything was under control, and didn't worry about it any further. I went on my merry way...

Then a month later I happened to meet someone with the awful horrible complications, and you know what I mean. He confided that his condition was caused by AN. Well, the hair on my neck stood on end. It was a shock, and one I would later have to work through. We talked, and I immediately knew AN was nothing to take lightly. I began to read the Internet, and contacted many, many AN patients. The learning process was arduous, and scary at times. It is a lot to weed through. What is fact, and what is fiction? What is true, and what is exaggeration? What are the odds? And on, and on. But this learning turned out to be essential to my success story.

I'll jump right to the essentials in describing my learning process. I learned from my MRI report that my AN was small (4mm by 5mm), and "LATERALLY" located (in other words, it is located near the cochlea). I also learned that for a laterally located tumor, the retrosigmoid approach (also known as the suboccipital or posterior fossa approach) could not get directly to the tumor because the cochlea is in the path. This approach could get my AN out, but they'd have to perform surgery AROUND CORNERS, literally around the cochlea, using mirrors or endoscopes -- and this substantially reduces the chance of preserving hearing. My hearing was still pretty good, so that was depressing. (So for a short while I was tempted to just wait and let the tumor come take my hearing in its own good time.)

I found out that the middle fossa approach offered a direct path to the tumor, the best exposure of the tumor (without using mirrors or endoscopes), and the best chance of preserving my hearing. (Note: The middle fossa approach is less advisable if the tumor is large or not contained within the inner auditory canal. Each approach has its advantages and disadvantages.)  I then learned that my scheduled surgeons (in the Midwest) did not do the middle fossa approach. In fact, no surgeon at that otherwise excellent medical center uses the middle fossa approach.

If I had waited until my scheduled appointment to find all this out, then I would have been tempted to go ahead with an (inappropriate) retrosigmoid approach. Or I would have had to re-queue into another waiting line and wait several more months -- while my hearing was deteriorating. My jumping early on this matter enabled me to save precious time and find the right surgeon for my particular case -- and prevent my hearing from deteriorating further. I cautiously verified each point with more than one surgeon at more than one institution. I eventually found the right surgeon for my case.

Convincing my insurance company is another long story. You see, everyone in the process routinely sends you to your "primary care physician" to get any referrals. Yet that person is not a specialist, and doesn't know about AN, or laterally positioned tumors, or middle fossa, etcetera. That person is
overworked, and ... well, getting through that process takes a lot of effort from you.

Back to my current situation, four weeks past my surgery...  I have a hearing loss at the higher frequencies (above the range of speech), and still have a moderate tinnitus (ringing) in that ear. The doctors say that in my case my hearing (and perhaps my tinnitus) might actually improve as the swelling goes down. They have a reason for saying that: when they did the one-week post-surgery hearing test on me, they saw that I had blood behind my ear drum, and of course this decreases hearing.  So they did an extra type of hearing test where they present the sound not to the ear, but to the bone behind the ear with a "bone oscillator". This vibrates the bone, and the sound gets to the cochlea through the bone, completely bypassing the blood and the middle ear. They found that my hearing was even better with this test, "perfect" was their word for it (again this was at frequencies below about four kilohertz).

They severed both the superior and inferior vestibular nerves on that side. I am quite dizzy and disoriented, but this is improving still day-by-day. I have been driving a car for a week already, and I have ridden a bicycle (though not very aggressively yet). I can balance okay, but it's still a bit slow. I expect I'll be much better in a few months.

Though there was discomfort, I was surprised at the low level of pain during the surgery and hospitalization.  The head aches and bone aches lasted about four days, and were not severe. I haven't had any other bad side effects. No memory loss. No seizures. Currently: -- No headaches. No bone aches. No fatigue. All in all, that's a great result, considering the many possible outcomes...

My success story is due to the expertise of my surgeons, and to the early detection and small size of my AN, but also to my effort in getting timely answers and decisions. I have great respect for the tremendous courage of those AN sufferers whose outcomes were not as fortunate as mine. Yet I believe my story can give hope to those whose pre-surgery situation is similar to mine.

All the best,

Walter R.
September 1999

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Last Edited: Friday, November 01, 2002