The following article appeared in the March/April 2002 issue of Hearing Loss: The Journal of Self help for Hard of Hearing People.

My Cochlear Implant...The Rest of the Story

By Harriet Frankel

Our author says that “Despite that I am past 80 years old, and after a thoughtful investigation, I had a cochlear implant. I studied the literature from manufacturers and talked with people who had the surgery about their first-hand experiences. Yet, I left the hospital totoally unprepared for the adjustment period.”

Happy with the outcome, Harriet Frankel gives us her view on the real, day-to-day challenges for people, especially seniors, who have cochlear implants. She talks about, as she puts it, “Some of the things they don’t tell you.”

For years, commentator Paul Harvey has been telling us "the rest of the story," expanding on the headline news with what we weren’t told. So, for those of you who are contemplating a cochlear implant, I want to expand on what the doctors tell you and what is presented in the literature from the manufacturers. Their information is good, but I have “the rest of the story.”

I’m not a doctor, a scientist, or an audiologist, just a woman in my eighties who had been slowly losing my hearing since my teens. I had reached the point where a hearing aid, no matter how powerful, could not enable me to have a normal conversation or enjoy music, lectures, plays, religious services or even shopping. For me, the cochlear implant was the only option.

Before I had my procedure, I talked with others who have had their implants for some time. They were so happy and well adjusted that they seemed to have forgotten their adjustment period. But, it would have been easier for me if someone had told me about the problems. They’re insignificant compared with what is to be gained, but I think people considering cochlear implants should be made aware of all the little day-to-day adjustments needed. I was not expecting instant improvement to my hearing. I knew it would take time, but I didn’t know what that time would involve.

After consulting with numerous ear doctors, I decided that I had nothing to lose by going ahead with the surgery. Because of my age and because I’m a widow, I knew I would need someone to take care of me during the time in the hospital and the post-operative days. So, I left my home in Atlanta and flew to New York City, where my daughter lives, and had the cochlear implant surgery by a well-known specialist.

Although the literature stated that the operation could be performed as an outpatient procedure or with only an overnight stay, I was very ill with vertigo and had to spend two nights in the hospital before I went to my daughter’s home.

Because I was still dizzy, she rented a walker so I could move around without falling. And, because her TV was old and didn’t have closed captioning, she also rented a TV capable of captioning to help me pass the time. I was relieved that I'd chosen to have the surgery in New York so that I could rely on someone close by.

A Totally Silent Month of Waiting...

I was told that I would have to wait a full month to heal after the surgery before I could get my processor and be “turned on.” Although I had been warned that the operation would leave me totally deaf, it was still very frightening not to hear any sound at all. With the hearing aids, even though I was classified as profoundly deaf, I still could hear loud noises and voices if people yelled. Now, because my doctor operated on my good ear, I'm stone deaf when I take off my processor to shower or go to bed

After staying with my daughter for two weeks, I felt fine and was ready to go home until it was time to return to New York to get my processor. My flight home all alone and totally deaf was challenging because I was told not to go through the metal detector. I now had a metal plate in my head, plus the electrodes in my cochlea. I had a few frantic minutes trying to find a way to get to my plane without going through the metal detector. Finally, I got through security by way of the exit, then had the inspector manually sweep me with her wand.

Two weeks later, I flew back to New York to get my processor and begin mappings. Mapping is the process an audiologist performs with a computer to adjust the electronic sounds to the brain, which has to learn to interpret it all. These mappings change on every visit to the audiologist as the brain gets used to sound again.

After the doctor examined me and declared my surgery healed, the audiologist gave me my processor and microphone.

Would I Really Be Able to Hear Sounds Again?

This was it! I would find out if the operation was successful.

It was!

The audiologist turned on her computer, and I heard a beep. I wanted to cry. It was the first sound that I had heard in more than a month.

And what a beautiful beep it was! It was followed by an hour of more beeps while she did my first mapping. After two more mappings, I returned home to Atlanta and got in touch with an audiologist who worked with my brand of implant.

The first thing I noticed was that my dog's barking sounded like a foghorn. I could hear her, but the sound was so distorted that it was unrecognizable as barking. I wasn't hearing any high-pitched sounds at all.

I learned that the high-pitched sounds are the ones you lose first, and my brain had to adjust to these forgotten sounds. I had assumed the audiologist would build one program on the other, but because the brain continuously accepts new sounds, it’s necessary to get new mappings on every visit. The visits continue for up to six months to get the maximum benefit of this technology.

I had expected to be able to hear and understand conversation when I got my processor, but a month after getting turned on, I still couldn't understand everything being said. Then, one day when cooking my breakfast, I heard the bacon sizzle and realized I had forgotten that sound.

After two more mappings, my granddaughter turned on the car radio and I could hear some music, not just drum beats. And, my dog now sounds like a dog. I can hear dishes clank and my kitchen chair squeak and the vacuum cleaner is almost unbearable-not to mention the dishwasher. I don't know if my car engine always sounded that way or if I need a mechanic.

In addition to the mappings, there are some logistical adjustments to be made, such as, something as simple as getting dressed. For me, it’s easiest to wear the processor clipped to the top of slacks or a skirt, but this poses a problem going to the bathroom. Since I’m a well-endowed woman, I can also wear the processor in my bra. But there are some problems when I need to adjust the volume or replace the battery. That takes privacy.

The microphone is attached to my head by a magnet, but it kept falling off, so the audiologist had to give me a stronger one. Wearing a hat muffles sounds or knocks the mike out of place. I'll probably be wearing a lot of scarves.

The 3.6 V LI batteries only last between eight to ten hours and then have to be recharged with the electric charger that is part of the equipment. I marked my three batteries with nail polish to keep track of which ones are charged. I’ve not been too successful, since I went to a meeting and my battery gave out half way through it, and the spare in my purse was dead. It would be helpful if the battery would give me some warning when it’s almost drained, the way my smoke alarm beeps when its about to expire. When this happens, I’m in a silent world again.

I felt that I was tethered to an electrical outlet until I discovered that I also have a battery pack that takes three common AA alkaline batteries. However, when I use three AA batteries in my processor, it no longer fits in the leather holster I wear at my waist; the three batteries are wider than one 3.6 V battery. I intend to keep plenty of AA batteries on hand in the event of a power shortage like the one in California, or a power outage from an ice storm, which we've occasionally experienced in Georgia.

Would I Change A Thing?

I don’t think so!

I'm very grateful to all the doctors, audiologist researchers and scientists who have contributed to my reentry to the hearing world.

Little things mean a lot. Now, people can't sneak up on me any more because I hear them coming. No one is telling me to lower my voice because I'm shouting. I look forward to using a regular telephone again, but best of all, I can chat with friends and hear laughter, and eventually, when I need to increase the volume of my processor, I won't automatically reach for the hearing aid that perched behind my ear for more than half a century.

Harriet Frankel is an SHHH member from Atlanta, Georgia. She was editor for three years of the newsletter for the Atlanta Hears SHHH Chapter