If it's not life threatening, that's enough for me
Joe Lockwood's story

I was home when I got the call from the VA Hospital ENT Dr. He informed me that the CT scan of March 23, l989 indicated that I had a 1.5cm x 2cm AN, and he wanted me to meet with the surgeons so that surgery could be scheduled. I told him I wanted some time to think about it and would discuss it during my next visit to the VA. I then immediately went back to the medical school library and did research on AN’s. I was reading the same material that medical students and doctors read and it was very clear to me that this surgery was not simple.

When I met with the Dr. who would perform the operation, he said he would do a translab (translabyrinthine procedure). I do not remember if he volunteered or I asked, but it was established that the AN was not life threatening. That was enough for me. I was 58 and in good health;  there was no way I would have a life threatening operation with a guarantee of losing the good hearing I had, plus possible morbidity, plus other complications I had read about, for a non-life threatening condition. For me, logic dictated I wait and observe. He agreed, but wanted a six month follow up CT.

I am now 68 and have an MRI every two years. The last one on June 16, 1997 indicated a 1cm x 1cm extracanalicular AN. That is a summary of the pathology of my AN after discovery, and I consider myself very lucky. What follows fills in this story with some details and with some observations I have made...

I have read that you will always remember what you were doing when you have a sudden hearing loss, and I believe it. It was about 9PM on Feb. 6, l987. I had crawled from under my travel trailer, and as I stood up it felt like cotton had been put in my left ear. I still had fair hearing but I knew it was impaired. Tried all the usual stuff including ear drops, without success. Then went to my family doctor, and he did the usual and gave me medicine to help remove suspected fluid behind the ear drum. After a few weeks without success, I knew I had a problem and went to my ENT physician.

I need to point out here that music, both listening and playing for my own enjoyment, has and I hope will be a large part of my life. I also enjoy rebuilding pianos, which requires special use of hearing. So while the sudden mild high frequency loss was troubling, the distortion, for me, was terrible in that listening or playing was no longer enjoyable. I needed to find an answer, and hopefully a cure.

My ENT doctor got an audiogram which confirmed a mild SSHL (sudden sensorineural hearing loss) in the left ear. The Hz up to 2000 were only - 10db, but the so-called "4000Hz notch" was - 85db. I got the usual shot in the rear, and in a few months the notch had improved to -60db. But the sound distortion remained. Sound distortion to the patient is subjective. It can’t or is not measured by an audiologist, and ENT doctors don’t seem to or want to talk about what they cannot see on the audiogram. So, after paying to watch eyes glaze over while trying to get answers about my hearing distortion, I decided to do my own research at a medical school library. Well, there is practically nothing about hearing distortion in the library.  It’s a patient’s subjective findings! The closest word I could find in the medical dictionary was "dysacusis": A condition of impaired hearing that is not measured in db, i.e., physiological distortion that causes pure tones to be heard as noisy.

I subsequently got into the VA Hospital, where I pushed for answers and got more audiograms, a couple of ABR’s, tympanorgam, reflex sensitively, the whole nine yards, but nothing conclusive, until one of the ENT doctors called for a CT scan on 3/23/89, which showed a 1.5cm x 2.0cm AN. I had more CT scans at the VA on 12/22/89, 10/19/90, 11/4/91, 10/28/93. As soon as I hit 65 and Medicare, I found a private ENT physician and switched to MRI’s. The first MRI on 8/5/95 was 1.0cm x 1.0cm as was the second on 6/16/97. The next will be June 99. When the Dr. and I reviewed the CT scans with the first MRI there was no comparison of clarity. The CT scans seemed to be an interpretation of shadows whereas the MRI was crystal clear, so he questions the original size as reported on the CT scan.. He may have a point, but for me the trend is certainly smaller and not larger.

One bit of mud in the water. I had a neurologist look at the last MRI concerning a comment made by the radiologist not relevant to the AN, and it turned out to be nothing. But the neurologist became interested in the AN. He indicated it was the strangest one he had seen (it is all in the cerebellopontine angle and most don’t start there), and he wasn’t even sure it was an AN. He did not know what it was, but thought it would be a good idea to follow it as I was doing.

My present ENT doctor advises surgery, even though it seems to be smaller and is clearly not attached to the brain stem, but unless he can convince me that it is life threatening, his advise will be rejected.

In hind site, had I not had the distortion which adversely impacted on my musical enjoyment, I probably would not have so diligently pursued the problem, and probably would not have even discovered I had an AN. My hearing distortion has subsided, or I have learned to accommodate it, but it took years. I believe that hearing distortion accompanies hearing loss, and so if I should need treatment, I would look for the one that has the best chance of saving hearing on my terms.  And if I thought some would go, then the treatment that would lose it gradually. Based on what I have seen so far on the net, it would appear radiosurgery offers this. I do not want to go thru a sudden hearing loss again if I can avoid it.

The hardest thing I have had to deal with since finding out I had an AN is thinking about it. That makes me very lucky compared to many others that have told their stories.

Joe Lockwood <pinol AT bellsouth.net>
Sep. 1998


Update

7/99. I had my scheduled MRI on 7/14/99 and the results showed no growth. Also there have been no new symptoms that could be associated with the AN.

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Last Edited: Wednesday, October 30, 2002