Norman the NeuromaSomething’s Wrong

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Saturday,  Sept 26th 1999

It was a beautiful sunny day in Seattle. I remember that I slept in, but when something was wrong. My hearing on the left side, which had been perfect the day before, had become strange and distorted. I had developed a slight, barely noticeable sensation of pressure and numbness in the immediate area inside my left ear, and I was also being abruptly plagued with tinitus.

I had lunch at a nice restaurant, and shopped at a bookstore. I remember being amused at how weird peoples’ voices sounded in my left ear. I spent some time at Seattle’s Volunteer Park with my car parked under a leafy tree, reading in my car as joggers ran by. As the day went on, and the distortion in my left ear didn’t improve, my amusement rapidly turned to concern.

That evening, I stopped by the emergency room at Group Health in Bellevue. My hearing was still distorted and the sensation of pressure had become uncomfortable, but not painful. The doctor looked in my ears, and told me there was no evidence of infection. Then he held one hand close beside my left ear. I tensed, waiting for him to snap his fingers. The doctor looked at me oddly and said, "You can’t hear that at all, can you?" He was rubbing his fingers together, and I was completely deaf to the high-pitched sound.

Tuesday,  Sept 29th 1999 Went to see my regular doctor about my hearing loss. Subjectively, my hearing had improved slightly in the few days it took to get an appointment. My tinitus, however, became worse, eventually becoming so loud that I could hear the tinitus over the sound of the car while driving on the freeway in my Celica.

The simple hearing tests available at the General Practitioners’ (GP’s) office showed a "moderate to severe hearing loss." I was referred to a Dr. Abson, an ENT (Ear, Nose and Throat) specialist at the Everett Clinic, for more tests.

Oct - Dec 1999 My hearing continued to improve during the week it took to get in to see the ENT. The distortion faded away, and the tinitus, which had been a complex sound like an orchestra of mice tuning up, became much quieter and changed to simple slowly varying notes.

By the time Dr. Abson’s audiologist saw me, my hearing was about halfway back to normal. My Speech Discrimination Score, or SDS, was 100% in both ears. In my left ear, my pure tone hearing threshold was normal for lower frequencies, and dropped to 35dB at 6000 Hz. However, my hearing appeared to be normal when the tones were pumped directly into the bone, bypassing the eardrum. This would imply some middle ear problem, although no sign of infection was present.

Dr. Abson suspected some sort of temporary blockage of the eustatian tubes, and he pronounced, "Well, it doesn’t look like a tumor." Not the most comforting statement, but I know he meant well. I was told to return in a month (with a CT scan of my sinuses) if my hearing didn’t continue to improve.

But my hearing did continue to improve.  And there were other distractions:  work picked up again, and my union's contract was up. And then a few days after Thankgiving, my landlord accidentally set the common wall of my duplex on fire during a repair, which put me in a motel for 3 months during the repairs.

By December, the hearing loss became a barely noticeable annoyance, and the tinitus had faded to a continuous, high-pitched whine that could only be detected in the quiet surroundings. The only other hint of trouble was that it seemed to be more difficult that usual for me to stay on key while singing Christmas carols.

I also began to have occasional periods of slight lightheadedness. Nothing serious, just a faint floating feeling or a sense of slight imbalance while looking up. Everything’s fine, right?

January - February 2000 Boeing declares war on its engineering and technical employees. The technical staff, already demoralized by endless reorganization, senseless layoffs followed by panic hiring, constant overtime, low pay relative to industry standards, and general mismanagement, is now asked to accept cuts in benefits immediately after the company announces a greater than 100% improvement in profits. Company executives appear to be on a collision course with a completely avoidable strike.

My hearing begins to deteriorate again, and I develop occasional periods of very mild lightheadedness. The company’s "final offer" comes in, and although it ALMOST satisfies our needs, the idiots running the show had to stick in an insult. The company’s offer takes away a few benefits which cost almost nothing for the company to offer to us, but which would be very expensive for the employees to replace out of their own pockets. (life insurance and some disability coverage) The cost of the deleted benefits is roughly $7 million for the duration of the contract, or less than 1/3 of 1% of the value of the contract. This is also equal to 2 days salary for the entire union, so after two days on strike, the company would have saved enough in salaries to offer the deleted benefits back to us for free. So what do these guys do? They provoke a strike and then refuse to negotiate for 40 days! The cost to Boeing is in the billions of dollars, they end up having to give us a better contract anyway, and the strike could have been prevented for a sum smaller than the annual corporate expenditure on toilet paper.

While carrying my picket sign, I wear an earplug in my left ear because the sound of drivers honking their horns in support makes a horrible sound in my left ear. I also begin to get extended periods of dizziness, which I blame on the smoke from the burn barrels. It so worries me that I bought some sheet metal and made a chimney for the burn barrel at my windy picket site, to keep the smoke out of my face. For some reason, the dizziness doesn’t go away.

March 2000 After we’ve been on strike for three weeks, my hearing starts to deteriorate more rapidly. I make an appointment with my GP, Dr. Brown, and request a new referral to my ENT, Dr. Abson. At this point, I suspect industrial hearing loss or some sort of progressive infection, but I can’t help but remember Dr. Abson saying, "Well, it doesn’t look like a tumor."

About this time, I’m watching a videotape of the excellent HBO miniseries, "From Earth to the Moon" with my brother-in-law Rich. In one sequence, the show tells the story of astronaut Alan Shepard who was sidelined from the space program with mild hearing loss, serious tinitus, and severe vertigo. Shepard had Meniere’s Disease. Maybe this is what I’ve got!

Halfway though March, the company begins to negotiate with the union in good faith for the first time since the strike began. They offer to restore our benefits, and agree to offer us a signing bonus roughly comparable to the bonus received in the last two contracts. Out of pure spite, they insist on paying the bonus in three payments spread out over a full year.

The fight over the contract is harsh. A small but intensely vocal minority of the members are viciously insulted and blame the union leaders for not getting the union a sweetheart contract. The meetings to discuss the contract are loud and ugly. I attend two of the three meetings and the noise is deafening. The noise awakens my tinitus to an appalling level, and disturbs my hearing. The day after the member meetings, I find it very difficult to understand voices on the telephone with my left ear. The contract is accepted, and SPEEA returns to work triumphant but still disgruntled. Boeing’s leaders have made no effort to welcome the employees back, and no effort to smooth over the insults contained in the accepted contract.

I see Dr. Brown and have a hearing test, which shows a mild to moderate hearing loss, comparable to the loss I had experienced back in Sept. I have an appointment to see Dr. Abson in two weeks, but he wants me to have a CT scan first. A CT scan?! Is this about the tumor thing?

I begin to get mild daily headaches on the affected side of head. The pain is at the back or top of the head on the left side only, and the pain is notable more for its steadily increasing duration than for its intensity.

The CT scan turns out to be of my sinuses only. Dr. Abson suspects the my hearing problems might be caused by ear infections or eustatian tube blockage, possibly tied to my acute recurrent sinusitus, which may be partially tied to my deviated septum (from a childhood broken nose).

But when I see Dr. Abson in person, this doesn’t appear to be the cause. His audiologist does a more sophisticated hearing test and finds my Speech Discrimination Score, or SDS, has fallen to 70%, although my pure tone hearing is roughly the same as when I first visited them in October. A low SDS score, combined with mild high frequency hearing loss, is a strong indicator of Acoustic Neuroma. Dr. Abson says, "It could be a tumor after all. Something called an Acoustic Neuroma. But don’t worry – if it is a tumor, it’s probably not cancer, just a growth."

Just a growth? I had a cousin die from brain cancer when I was in grade school. I thought brain tumor == brain cancer == certain death. Dr. Abson schedules an MRI with gadolinium enhancement. I do some reading on Acoustic Neuroma, and everything fits except for the rapid onset of symptoms (which is uncommon, but hardly rare). Mom is in denial. She says, "You won’t have a neuroma." Unfortunately, in my reading, I’ve discovered that there are few other options which fit the symptoms, and some of the less likely diagnoses are fatal cancers like astrocytomas or gliomas. What the heck have I got?!

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