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My Cochlear Implant Saved Me from Constant Fears of Worsening Hearing Loss

Thursday, May 13, 2021

I was 30 years old and on a cruise when I first noticed a problem with my hearing. A creaking sound woke me up one night, and when I rolled onto my right side, I could no longer hear it. When I returned home, a hearing test confirmed a severe hearing loss in my left ear, which did not improve with treatment. A conventional hearing aid did make everything louder, but it did not improve clarity, and I still had to rely on my right ear, for the most part. 

Learning to live with uncertainties

When I was 42, something similar happened, this time in my good ear. There was a noticeable drop in my hearing, and some distortion. Female voices sounded tinny and robotic. This time, however, I was able to get treatment more quickly. The distortion went away and I was left with a mild loss in my right ear. I started wearing BiCROS hearing aids, which amplified the sound in my good ear to compensate for the mild loss there, and sent the sound from my bad side to the good one so I could hear from both sides.

There was a constant fear in the back of my mind that the next time it happened, I would become unable to understand anyone.

— Tina Mancuso, who hears with an AB cochlear implant

After the second sudden loss, I saw multiple doctors, trying to get some answers as to why this kept happening. They did many tests, but none of them were able to give me a definitive diagnosis, or, more importantly, tell me if or when it might happen again. Though I tried not to dwell on it too much, there was a constant fear in the back of my mind that the next time it happened, I would become unable to understand anyone. But since there was nothing I could do, I did my best not to think about it.

By this time, I had mostly adapted to hearing on only one side. I always took the leftmost seat at restaurants so my companions were all on my “good” side. My husband got into the habit of walking on my right so I’d be able to hear him. I used closed captioning on TV, and sought out open-captioned theater performances and movies.

A different technology

In early 2019, my audiologist suggested that I might be a good candidate for a cochlear implant in my left ear. I had heard of CIs before, but it had never crossed my mind that they might help me. I went home and started doing research, and was intrigued enough by what I found to schedule an evaluation with an audiologist who specializes in cochlear implants.

The evaluation consisted of repeating words and sentences in varying amounts of background noise while wearing a powerful hearing aid in my left ear. Afterward, the audiologist said she thought that I would indeed benefit from a CI, and referred me to a surgeon in the same practice. I saw him and he concurred that a CI could help me. But he cautioned me not to get my hopes up because my insurance might not agree to pay for it since I had one reasonably good ear.

A month later, I got a call from the doctor’s office: my insurance had approved the CI! I scheduled the surgery and met with the CI audiologist again to discuss brands. She said the practice handled all three of the major CI brands, and they were all good, so the choice was entirely mine. I started doing more research. 

Eventually I decided on Advanced Bionics for a few reasons, the most important being that the internal implant has the best capacity for working with future technology. This means as the processors improve, I won’t need additional surgeries. In addition, since I knew I’d be bimodal—meaning I would be wearing a hearing aid on one side and a CI on the other, I liked that the hearing aid can communicate with the CI. AB’s customer service also impressed me. When I sent an email to inquire about accessories, I got a call from a very helpful representative named Lilia, who walked me through the options and helped me decide which would best suit my needs.

I figured that even if it didn’t work, I still had one good ear, so I’d be no worse off than I was before.

— Tina Mancuso, who hears with an AB cochlear implant

Going into the surgery, I was optimistic; I figured that even if it didn’t work, I still had one good ear, so I’d be no worse off than I was before. I thought of the CI mostly as insurance in case I had another sudden loss episode. I hoped it might improve my quality of life, but I didn't think of it as an absolute necessity.

My left ear was implanted on July 16, 2019, when I was 48 years old —18 years after that first hearing loss. My surgery and recovery were uneventful; I had very little pain and no other side effects. At my post-op check-up a week later, the doctor said I was healing nicely and cleared me to return to work and exercise. Activation was set for August 16.

Another drop in hearing

At the beginning of August, midway between my surgery and activation, the universe threw me an unexpected curveball in the form of a third sudden loss of hearing in my right ear. Treatment helped a little, but I still ended up going from 84% word recognition in that ear to 44%, even with a hearing aid. Those last two weeks before activation, which I had expected to be full of happy anticipation, were now full of anxiety and fear. I had to ask my coworkers and my husband not to try to talk to me in person but to use email and online chat. The only way I could understand someone was if they were inches from my ear and speaking loudly. Even then, it was hit or miss, and the hearing aid I had at the time was not nearly powerful enough to help much. It was a difficult time, and it seemed like activation day would never arrive.

Eventually, the day came. I had done enough research to know that “rock star” activations, where people immediately understand speech, are rare. But I still had a tiny bit of hope that I’d be one of them, especially with this latest loss making things so difficult for me.

I wasn’t. Once I put on the processor, every word everyone said sounded like beeps, a little like a higher-pitched version of the adults in a Peanuts cartoon: “Wa wa wa wa.” The audiologist said this was normal. She gave me five identical programs at my first mapping, telling me to start with Program #1 for a few days, then go to #2, which was at a slightly higher volume, and so on, up to #5. Each time I switched, the volume increase was overwhelming, but by the time I got to #5, Program #1 sounded as soft as a whisper. It’s amazing how quickly the brain acclimates!

The evening after my activation, I began trying the accessories. After we paired the Naída CI Connect to my phone, my husband put on a podcast, and I heard, “Wa wa wa wa Car Talk wa wa wa…” It was only two words out of many, but I was ecstatic — there actually were words in those beeps!

Then I tried streaming an audio book. I chose a book I was familiar with, and I had the printed text in front of me as I listened. But it turned out I didn’t need the print. I understood the audio book easily from the very start, even though I couldn't understand regular conversation. That was another hopeful sign. I listened to audio books, podcasts, and captioned videos every second I could in order to help my brain get used to this new way of hearing.

Looking forward to new possibilities

It only took a few weeks before I was able to understand normal conversation with my CI. As of my most recent mapping in February, 2021, a year and a half post-activation, I scored 96% on a sentence recognition test. I hear best with both my CI and the Naída Link hearing aid I got a few months after my activation. But of the two, the ear with the CI (the left), is now my better ear.

I do not try to hide my CI sound processor. I enjoy decorating it with skins, charms, and colorful cable wraps. I also asked a friend who’s an amazing artist to paint designs on a bunch of color caps for me, including a dragon, my favorite flower, a starscape, and my favorite Looney Tunes character. 

At the time of this writing, I’m scheduled to get my second implant in June 2021. So I am excited about the upcoming Marvel processor, has many features I'm excited about, like built-in Bluetooth capability.

Tina Mancuso
Written by Tina Mancuso

Tina Mancuso

Tina is a computer programmer who lives in northern Virginia with Ray, her husband of 21 years, who has been an incredible source of support through multiple hearing losses. In her spare time, she enjoys travel, riding roller coasters, reading, knitting, crocheting, and making chainmail.

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