Life with a Cochlear Implant—Before and After

by Neil Bauman, Ph.D., with Michele and Dawn

People have asked me about cochlear implants (CIs), and want to know whether a CI might be a good choice to help them hear better. They want to know what kind of hearing results they might expect. I can’t think of a better way to explain this, than in the words of two of my friends—Michele, who is considering getting a CI, and Dawn, who now has not just one, but two CIs implanted in her head.

Michele is very hard of hearing (although you’d never know that when you talk to her one-to-one) and is investigating getting a cochlear implant. (Incidentally, Michele is a wonderful example of a hard of hearing person who has learned to successfully thrive in spite of her hearing loss.) She wrote to the SayWhatClub’s CI (cochlear implant) list and explained:

I’ve mentioned before that I am not merely ‘surviving’ with my hearing loss, but that I’ve learned to work my way back up into “thriving” with each new hearing dip, and that is mostly true. My hearing loss doesn’t keep me from the things I want to do. For example, I kayak alone in the northern Minnesota wilderness, I travel alone (even internationally), and never really consider that I can’t do anything I want to do because of my lack of hearing.

However, since my last hearing dip several years ago that took most of my hearing in my right ear, I’ve not been able to participate in some group activities that I enjoy. For example, I have a hard time playing board games with the family when we gather for holidays. I have all the struggles that everyone with a severe/profound hearing loss has in group settings, though I’m very good at voicing what I need in these situations. However, when it’s a gathering of other sorts, I’m usually in the dark about the conversations going on around me.

Example: my son’s college soccer coach took the senior players and parents out to dinner this past Friday. We were in a small room at the restaurant where the dinner took place. I was seated at a round table with six other people, and there were several other tables and booths surrounding us. I spent the evening mostly watching what others were saying—trying to keep up, and not doing a very good job of catching what the conversations were about.

Now I’m considering getting a cochlear implant. Can any of you tell me specifically the kinds of situations that you had trouble with before your CI surgery, and how they are different now that you have your CI? I hear many talk of difficult hearing situations even after getting a CI, and I’m wondering about those also. What situations do you still find challenging? Here are some things I’m curious about.

Talking on the phone—do you still need to use CapTel [captioned telephone]? Watching TV—do you still need to use closed captions? Going to the movies—can you watch a movie in a theater without captioning and understand what’s going on? Now that you have a CI, can you follow conversations at gatherings? I want to know the specifics—details and examples.

Dawn, a long-time member of the SayWhatClub’s CI list responded.

My hearing loss was over the course of my lifetime, just as yours was, with significant drops with each of my 3 pregnancies and menopause. I was still working full time, and read lips well enough that many people had no idea how severe my hearing loss was—a 90 to 95 dB loss across the audiogram—basically the same in both ears. Even when wearing my hearing aids, my word recognition scores were only 12% in my right ear, and 30% in my left ear.

One-to-one I did OK, but any social activity where there were multiple people talking, or background noise, I was not able to comprehend speech. Hearing aids made the sounds louder, but they couldn’t help my brain turn it into English that I could understand.

I couldn’t hear at family dinners, or in restaurants. I couldn’t hear anyone who walked up behind me and spoke. I couldn’t hear my name called in the doctor’s office waiting room. In fact, the list of places I couldn’t hear was extensive, while the list of places I could hear was very short!

I had my first implant on my right ear in July 2008. I heard ever so much more clearly with the CI than I did with my hearing aids! Within a month of my activation, I scheduled a second surgery—for a CI in my left ear.

I still don’t feel I hear well on the phone, but it all depends on the speaker and the connection. I can (and do) talk to my kids on my cell phone now. Sometimes it’s crystal clear. Other times it’s gibberish, and I have to tell them to text me.

I can understand the TV now without the captions most of the time, and even have to ask the kids to keep the volume down now! I can understand the radio if there’s not a lot of background noise. I can often understand what’s being said on the loudspeaker in a store, or hear the music they play in the store.

These things were not “instant on” when I was activated. I had to work hard to learn to hear again. I gained these skills as I practiced listening, and my brain learned to use the new sounds my CIs provided.

As soon as they activated my second CI, I could tell the direction from which sound was coming—something I never could do with my hearing aids.

For me, hearing with the CI is a much more natural experience—not the painful and annoying way my hearing aids amplified sounds! With my hearing aids, I couldn’t wait for the end of the work day to take them off. I always had a headache because of how loud they were. All this is gone with the change to my cochlear implants. Now, nothing is too loud—no more headaches.

One year after I had my first CI surgery I took sick and spent much time in the hospital and in doctor’s offices several times a week. I almost always went to the doctor’s appointments by myself. I would never have been able to manage those things alone, or with confidence before my CI surgery.

True, it sometimes does take me a minute or two of listening to someone to “tune in” to their voice so I can understand them clearly. Also, occasionally I still have to ask someone to face me when they speak, but through all my medical issues I only had one doctor I absolutely could not understand, and that was because of his strong accent, not because I couldn’t hear his voice!

When there are large groups and a lot of background noise, I still have some issues, but I have been to several large ‘conference’ type events in large meeting halls, and understood every word the speaker said, which would have been impossible before.

Now I not only hear when my car starts, I can also hear when a car is coming up the street. I can also hear when a car starts when I am walking in a parking lot.

What have I heard that has made it all worth it? I heard my now 3-year-old grand daughter snore in the back seat of the car when she was a newborn. I once heard her speaking when her mother said it was gibberish. She was in the car seat saying something over and over, which her Mom said was nothing, but after a moment it was very clear to me she was saying, “Get me outta here!” I hear her squeal in delight when she sees me. I would not have heard those wonderful sounds if it were not for my CIs.

Sure there are some small sounds I might not hear, but they are inconsequential because what I now hear is a gift!

Everyone is different in the amount of sound/clarity they gain with a cochlear implant. Furthermore, everyone is different in the time it takes them to learn to use the sound the CI provides. I feel that I risked little in the tiny bit of residual hearing I gave up in order to gain ever so much more with the CI!

One key point in learning to hear with the CI—you have to wear it for your brain to learn to understand the new sounds you are now hearing. You can’t just put it on for a social occasion once a week/month and expect to hear well. I wear my CIs all day, every day. Even now, two years post activation, I still notice how sounds continue to improve.

A second thing I’d like to mention is that hearing is now my choice—so when the upstairs neighbors are noisy, or if I want to read a book in total peace and quiet, I simply turn off my CI’s and put them away! I don’t do this often because I enjoy being able to hear when someone knocks on my door (and sometimes I enjoy being just a tiny bit nosey).

The above should give you an idea of what I’ve gained from receiving my cochlear implants. My hearing is still not perfect, and it never will be, but wow, what I hear now sure works for me!

Thanks you, Michele and Dawn, for allowing me to use your stories. You are helping many others learn about cochlear implants, and how they can improve a person’s life.

If you are interested in learning more about cochlear implants, consider joining the SayWhatClub’s wonderful CI list. Not only will you find many of the answers you seek, but you will also receive wonderful support and friendship. That’s a combination that’s hard to beat!

To join the SayWhatClub (SWC), click here, then click on the “Joining” button. There it explains about the SWC, and how you can join. When you contact the SWC, a person from the SayWhatClub’s hospitality committee will contact you and guide you through the process. Maybe I’ll see you there. You will be welcome!