It was time. On January 12, 2017, I received my cochlear implant (CI) at Sunnybrook Health Sciences Centre in Toronto. This was a huge step—one I had never expected to take in my lifelong pursuit of better communication.  

This article is the first in a series called “Changing Cochleas”. The series starts with my decision to have a cochlear implant and continues with the surgery experience and through the rehabilitation process.  

As a writer about hearing loss, the brand of my hearing aids has seldom been relevant to my writing. But unlike hearing aid manufacturers, cochlear implant organizations not only produce the technology but also play an important role in helping recipients successfully adjust to the implant. So, the story of my CI experience is also about the brand I chose, Cochlear. I know many people who have happily and successfully chosen to be implanted with other brands of CI technology.

What’s important is that we have all been given the opportunity for improved hearing—and took it.

 

Why A Cochlear Implant?

 

What is it like not to hear?  What lengths would you be prepared to go to hear, to hear well?

Imagine that you, who had once been able to hear reasonably well, were faced with the reality that your hearing was getting worse, maybe much worse.

You realize this because voices, including your own, don’t sound quite the same and telephone conversations are less easy, more heavily punctuated with pardon and repeat that, please? 

You realize this because the misery of tinnitus and hyperacusis is part of your daily life. You realize this because, in spite of new hearing aids, people tell you that you’re not hearing as well as you used to. This is always the most painful blow because they’re right. Our communication partners know this before we do. We can’t tell we’ve missed something because—we didn’t hear it!

But you don’t want to believe this because you’ve paid your hearing loss dues—a life of living with it. You went to the annual checkups. You sat at the front of the class. You told people you had hearing loss. When finally cleared by an enlightened ENT at age 21 to wear hearing aids, you adopt them with passion.

This was my life, and for the next 40 years my communication improved because hearing assistive technology improved. I met people with hearing loss who introduced me to communication strategies not discussed by hearing care professionals. In my new world of hearing advocacy, I met people whose lives were changed by hearing aids and cochlear implants. At a conference, I watched the face of a close friend as she sat with glistening eyes, awestruck at hearing music for the first time in years because of her cochlear implant.

I was considered too highly functioning to qualify for a cochlear implant—and that was OK with me. I didn’t want to qualify, being grateful that I could benefit from hearing aids which, to my immense satisfaction, had moved out of the clunky beige design era. And at least, I thought to myself, I don’t have tinnitus or hyperacusis.

In the summer of 2015, I started struggling for the first time in decades. A new ENT said—I’m paraphrasing but this is how the words hit me—“You’re on your own with the tinnitus because we don’t know much about it. But, frankly, your audiogram sucks and you probably qualify for a cochlear implant. Would you like me to refer you for an evaluation?

My immediate reaction was NO! Cochlear implants are for those other people, the ones who can’t hear. I’m sitting talking with you, so I’m doing just fine. NO!

But after my silent mini-breakdown, I thought, what have I got to lose?

I’m competitive enough that part of me wanted to be evaluated and turned down because hey, I really am an amazing communicator who has this hearing loss thing licked.

But, what if I could hear better afterwards? After all, my recent audiogram showed 2% speech discrimination in the right ear—and that’s because I guessed correctly.  If there had been another 50 words, I bet I could have guessed that speech discrimination score up to 10%!  The truth is that my right ear hadn’t been pulling its weight for many years, providing only some sound balance through a hearing aid.

So how far would I go to hear better? I agreed to an evaluation….

…which didn’t go so well. In the sound booth, I stared down a menacing black speaker box.  My task was to repeat sentences uttered by a rich, adequately-loud, male voice, but without the help of my #1 strategy of speechreading. Very quickly, the sentences became gobbledegook and so did my repeats. I interpreted it like I heard it:  Ja, mein inken-dinken-clinkenboomer! Then it got worse: the audiologist added background noise.

Several weeks later, the doctor told me I’d been approved for an implant. The balance and MRI tests were fine and it was now up to me to decide; the clock to surgery date would start ticking when I said yes.

Although still in shock at being approved, I said, “Yes. Let’s do it.”

14 months later I was back at Sunnybrook for the pre-op appointment with Rebecca, the same audiologist who had done the CI evaluation—and who remembered my German and Russian responses—discussing the brand of technology to be implanted in my head. Cochlear, I said. I have many friends using the various technology brands and all of them are happy with their choices. But I was familiar with Cochlear, admired their innovation and leadership, and knew some of their people. Good thing I chose them, because it was the one that the hospital (which implants people with all three brands) recommended for my type of hearing loss and history.  

But my choice was also for aesthetic and technical reasons: the Kanso, Cochlear’s new off-the-ear, external sound processor, had just been approved in Canada. It’s sleek and pretty and while I don’t have enough hair to cover it completely, it’s going to leave at least one of my ears free of stuff. Hearing people may not understand how much we hearing aid users yearn to scratch our ear without first having to remove the hearing aid, or how our hearing aids and glasses jostle for behind-the-ear space.

I’m excited by the completely wireless capabilities of the new technology that will connect me to everything but the garage door opener. I may not understand the technology, but what’s important is that someone else does.  All I need to know are what buttons to push, how to change the batteries and how to care for it. Also, how not to lose it. When picking my accessories (more about this in future blogs), I examined the dummy version of the cream-colored Kanso. In my hands, it felt like an egg with a precious baby inside; I wanted to take it home with me and nest with it.

The process is now underway and it’s still a few weeks away to the egg hatching.

 

Next week: “Changing Cochleas, Part 2: A Perfect 1 ½ Turns”

Thank you to Cochlear Americas and to HearingHealthMatters.org for their support in the development of the “Changing Cochleas” series.  As always, my choices and opinions are mine alone.

Photo:  Kanso, Cochlear Americas

 

20 Responses to Changing Cochleas – Part 1: “Why a CI?”

  1. Ron Sinclair says:

    Thanks for this Gael. I’ve had the form from Sunnybrook sitting on my desk for a few weeks now while I was “stalling”. My word recognition continues to worsen and it’s time to move to the next stage.I saw a little comment by Rush Limbaugh, who wears two CI’s, commenting about being at a large dinner meeting recently. He was saying that environment is still difficult to deal with for him, as it is with we who wear hearing aids. It will be interesting to read of your experiences in different hearing situations as you go through them. Good luck with yours.

    • Anonymous says:

      Ron, thanks for writing. I just returned from a weekend conference of hundreds of CI recipients and in speaking to many of them, if there’s one thing I learned, it’s that the CI experience is different for everyone, especially in the smaller details and certain environments. But all of them would tell you that their lives have been changed for the better and they’ve been given back the world of sound. But I appreciate and understand your hesitation. Good luck and stay in touch.

  2. BARBARA says:

    Hi,
    Reading the blog I recognised that many people are worried about the crowded space behind the ear when wearing the CI processor and glasses. I provided the solution to that problem when I developed HEAR EAR securing clip that fits BTE hearing aids and CI processors. Young CI teenagers wear a HEAR EAR when taking part in activities as previously they were required to remove the processor for fear of loss. That left them incommunicado with their friends and team players and in a silent world. HEAR EAR is NHS Approved for use in hospitals and care homes and saves NHS funds in cost of replacements and also the distress caused when a device is lost or damaged. HEAR EAR is the SOLUTION to the PROBLEM. If interested please take a look at the website to see how you can benefit.

  3. Betty Randall says:

    Most interested in hearing more as you go along. I am waiting to have a complete hearing assessment in hopes I will be a good candidate for a CI. I’ve been wearing hearing aid for almost 20 years but am having so much difficulty in understanding conversation and as the years go by and my hearing detriorates even further, I may end up being quite deaf. I am in my late 70’s and keeping my fingers crossed for good news. Thank you for letting us in on your new journey.

  4. Wendy says:

    Is there a way to be notified of comments on this thread?

  5. Wendy says:

    Omg I’m so excited for you!
    I have a reverse slope loss so hearing aids don’t work well for me because :
    A) iThe truth is hearing aids are a huge money making business, this they are designed for 90% of the population that loses their hearing at high tones. For me they must reverse the program which is never optimal.
    B) Most background noise enters through low tones, so turning up the low tones also turns up the background noise. It becomes the same battle of trying to hear the voices over the volumized background sound.
    My questions are:
    Is there any natural hearing left after changing the cochlea, or will you be 100% dependent on the little egg transmitter for all sound?
    Is the intake still unnatural sounding?
    Please keep us informed of your transition and GOID LUCK

  6. Guruatma says:

    Wow about the egg – off the ear i yearn for as I also wear a turban. Take it easy and know this – Max said to me when I first got my CI, that some day I would think it was better than the hearing aid that I wear in my other ear – Impossible, I said. Well, now 3 years later the cochlear and my brain are becoming good friends and, lo and BEhold, he was correct. My CI Implant mantra: It’s a process. It’s a process. It’s a process…

  7. Anonymous says:

    Congratulations Gael. I always enjoy your positive messages, and so excited to follow you in this next stage of your journey. Best wishes managing the ups and the downs. Hope to see you at CHHA this year.

  8. Noreen Brazil says:

    Grand article! I look forward to the next ones, especially when your implant is activated and the mapping fun begins!

  9. Katherine Bouton says:

    Gael, I’m curious about what it was about your hearing loss that made the hospital recommend Cochlear.
    When I got my implant six and a half years ago, I was told that the implants were equally good, that the features tended to hopscotch – first AB comes up with a waterproof aid, then Cochlear. First Cochlear comes up with the Kanso, with luck AB and Med-El will follow. I wasn’t sure how I was supposed to make the decision and would love to have had some guidance. But the professionals were not singling out a brand, and the people who had a ci. already knew only about the brand they already had. Since they were stuck with it, most tried to convince themselves that their choice was the right one.
    I would love not to have to wear the earpiece, because my ears are small and I also wear glasses. It’s crowded back there.
    Does the Kanso attach to the magnetized implant? No wires, no earpiece?
    More information please!
    I look forward to this series.

  10. Julie Bishop says:

    Please try not to become a marketing tool for Cochlear. You will soon learn that we are married to our implants and our brand. Since half of your readers do not have a cochlear brand CI, you risk alienating them if you push your brand too much or insinuate that it is better than the others. You may not even realize you are doing it. Feelings will be hurt. Remember that all the brands work equally as well and outcomes are the same. If you have a professional relationship with Cochlear, I would suggest you make it known to your loyal readers. Good luck!

    • Anonymous says:

      Julie, in the blog above, you will see that I say upfront about people using different CI brands. Other writers do the same and I’ve tried for transparency, which I will reinforce throughout the blog series. I could have chosen any of the mfgs, but I’ve stated my criteria of why i made the choice I did.

  11. Cindy Gordon says:

    Excited to hear more!! Especially when it is turned on and a new world begins for you!!

    • bernie catana says:

      This is wonderful! Please write all of your experiences in DETAIL. I’m where you were in 2015 and yet I’m very apprehensive. I got approved but the surgeon said with “reservation” because I can hear a multitude of sounds but have pathetic voice recognition. I can’t understand conversation but can hear doorbells, iPhone beeps, water running, loads of nose but trying to discriminate as to what people are saying is impossible. So, while my surgeon said I should go ahead, he also said I may not have the success that others have had with the CI. It was so discouraging that I stopped thinking about it. But reading your blog has given me perhaps some thoughts to reconsider. Also, I’m worried about vertigo. I don’t have it now but did have a few episodes years ago and it was really scary.

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