Wednesday, June 23, 2004

The sudden drop

For three months I'd had a happy relationship with my little hearing aid and with the world through its help.

Last Thursday, didn't seem to be a good day. I found myself struggling to hear. The remarkable little aid hadn't given me the now-familiar 'beep' but I changed the battery anyway, just in case (the sound fades as the batteries die). That didn't seem to help much. But it was a busy day and I got through it.

Friday I headed to Moncton for a two-day conference. Once again things didn't seem to be going well. I struggled to hear my colleagues in conversation. I found myself cupping both ears in every meeting to try to follow. I changed the battery again - maybe that last one was a bum one. I was getting worried; I phoned my audiologist back in my hometown (who is not the hearing-aid guy) and left a message.

After dinner I begged out of a reception, choosing to go to my hotel room and work instead. It had become too difficult to converse with people. Saturday was worse. At one point I realized that I had turned the volume control on the aid up to "full" in my increasingly-futile attempts to hear - normal usage for me is about 1/3 volume. By the time I got home on Saturday evening things were still very bad. Things didn't improve on Sunday. Maybe a cold, I thought - fluid on the ears. That had been a problem before, but never this badly. Anyway, I would follow up with the errant audiologist tomorrow.

On Monday morning, when I woke up, I had no hearing at all in my left ear. This was bizarre and frightening. That's my hearing-aid ear. My right ear had also suffered a loss. My husband and I talked; the first thing I did was stop wearing the aid (which is in effect useless now anyway) in case it's somehow contributed. I stuck a finger in my right ear - which still heard - to block it and banged on the wall as hard as I could with my left fist. I didn't hear anything in my left ear. Anything.

I called my audiologist, "Amy", again and emailed her. She still didn't reply. My boss - the President of my Board of Directors, hugely supportive - suggested a Dr. Henderson, an ear-nose-throat guy who's supposedly brilliant. I called my family doctor about a referral; family doctor can see me to discuss it next Monday.

"Amy" the audiologist doesn't reply on Tuesday either. After work, frustrated, my husband and I go to the emergency ward. The doctor that sees us immediately refers us to Dr. Henderson. He'll fax the referral, he says. Call the office first thing tomorrow morning. Don't wait. Don't miss the appointment.

Today is Wednesday. I called the office this morning. Henderson's receptionist, "Carla", is helpful, patient, efficient. She hadn't received the referral, she said, but not to worry; she'd contact the emergency department and follow up. Fifteen minutes later she called back. Be at the Audiology Department of the local hospital in fifteen minutes. They'd give me a series of tests. Be in Dr. Henderson's office 9:45 tomorrow morning (this man has a four to six week waiting list). Bring the results of the tests. Don't miss the appointment.

We are in the middle of last-minute preparations for an extremely important conference which starts tomorrow. Within my field, this is one of the most important conferences held in the past ten years. It's being held at a world-class resort, the playground of former Presidents (the Franklin D. Roosevelts were most fond of it), Prime Ministers and brilliant writers and artists. I have helped organize one of three schedules of speakers for the conference. It has been months of careful, coordinated work. Hundreds of wrinkles have been ironed out. We've developed a first-class slate of speakers and made all their travel, accommodation and presentation arrangements. I am to be one of the presenters. The presentation, especially, is a hugely significant career milestone for me; it will essentially establish me as being an expert in my field.

I dropped everything and was at Audiology in fifteen minutes.

This is not because I am brave, or smart, or even because I am not. This is because my boss and my colleagues reacted to the situation like the remarkable team they are. Within a few minutes of the phone call, my tasks in wrapping up the conference arrangements and being the 'point person' on-site at the conference for our slate of speakers were transferred to another colleague who, while looking a little shell-shocked, agreed unhesitatingly to take on the role. We discussed the presentation; realizing that I can't be away now (Dr. Henderson's nurse speaks of CAT scans and other testing which will happen who- knows-when), I decided to cancel it. My boss, who I am essentially letting down by leaving him a speaker short, supported my decision unqualifiedly.

Fast-forward to the hospital Audiology Department: I saw my former erstwhile and eventually useless audiologist, "Amy", sitting in her office, and just had time to look at her with utter disgust and see her eyes widen in panic (what on earth did she think I was there for, I wonder now bemusedly. "Disgruntled ignored patient shoots up audiology department"?) before being ushered into the office of another audiologist, "Alain", much to my relief. I don't know what on earth I would have said to that woman.

I outlined the rapid decline. We communicated by Alain speaking directly into my right ear as I cupped it.

He put an earpiece in my ear. "You'll feel pressure," he said. Sure enough, considerable pressure on the ear canal and eardrum. But what alarmed me most was that when we did the test on my right ear, I heard tones accompanying the pressure. When we did the test on the left ear, I felt only pressure. I heard nothing.

"Have you seen other cases like this?" I asked.

"Yes," he said.

"Don't tell me how it turns out," I replied.

He told me the hospital sees about eight such cases a year - people with gradual progressive hearing loss who suddenly see a rapid decline over a few days or a week - but that they had seen three besides me just this month. How odd.

What could cause something like that to spike, I wondered.

They don't know, but the working theory, he told me, is perhaps it is a virus which is making the rounds in the community which has this particular impact on people with progressive nerve deafness, but which would not have the same effect on a hearing person.

Even weirder. What brilliant luck. But I didn't have time to reflect on it because we start the tests. Sitting in a small soundproof booth, I had earpieces inserted in both ears and was handed a button. Alain sat in another booth and we viewed each other through a glass window. First, he played a series of tones into the ear canal; every time I heard a sound, I pressed the button. To my utter astonishment, I heard three tones in the left ear - the one that had felt "dead" since Monday - compared to about fifteen or eighteen in the right. So it's not all over yet, I thought.

Then, holding a piece of paper in front of his mouth so that I could not read his lips, he gave me a series of words to say to determine comprehension.

"Say the word 'house'."


"Say the word 'van'."


"Say the word 'hairpin'."


"Say the word 'children'."


and so on, to see how well I comprehended words.

One last test in the booth in which sounds were played behind my ears (no idea what this was in aid of) while we did the old 'hear a sound, press the button' thing again.

Finally, out of the booth and back in the office, we did the pressure test again. Then he wrote. And wrote and wrote and wrote. He showed me my new chart. The right ear had declined, markedly. The line marking my "hits" staggered through the lower quarter of the chart. The line for the poor left ear crawled along hugging the y axis. Good God.

He would send the whole file - this test and previous similar ones I'd done - to Dr. Henderson, he said. Don't miss the appointment, he said. He said that three different times.

After we reviewed the damage like an insurance adjuster and a homeowner poring over post-tornado Polaroids, he asked if there was anything else I wanted to know. "I mean, I know you said don't tell you, but -"

"No, of course, I want to know. In the other cases you've seen - what has the outcome been?" I fully expected to hear that they had all ended up profoundly deaf. It certainly felt like that is where I was going.

"Fifty percent," he said.

"Fifty percent? You mean fifty percent don't lose all their hearing? Or fifty percent more hearing loss?" I asked, confused.

"Fifty percent chance that you'll recover some or most of the last rapid loss."

My chest felt tight. I thought for a second I was literally going to burst into tears in front of him.

"Recover?" I said. "I was just trying to find hope that I wouldn't lose what's left!"

"I don't want to give you false hope," he cautioned quickly. "But that is the result we've seen in the other cases that are similar."

He told me that if treatment -- there's a drug, apparently, which Dr. Henderson might prescribe -- starts within a week to ten days of the rapid drop, the odds have been 50-50 of some recovery. Even if patients don't seek help until more than ten days later, there's been a 33% success rate.

I left his office scarcely knowing what to think. I had to get back to the office, get my co-worker everything she would need to take my place at that conference. Later on, I'd be teary as I hugged her and my other colleagues goodbye, as they set off for the conference in the beautiful resort town, which I'd worked so hard to organize and wanted so badly to present my paper at. But now, as I took the elevator to the ground floor of the hospital, the conference didn't seem that important.

I knew what did, though. Don't miss that appointment.


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