My Cochlear Implant Journey

AUDIO VERSION

By Penny Leclair

A cochlear implant is a surgically placed electronic device that bypasses damaged parts of the inner ear to provide a sense of sound to profoundly deaf or severely hard-of-hearing individuals. Depending on your hearing condition, they can be single or bilateral devices attached on the side of your head. Unlike hearing aids, which simply amplify sounds, implants convert sound into electrical signals and transmit them directly to the brain. Recipients must have functioning auditory nerves to be a candidate to receive a cochlear implant.

A cochlear implant has two main components: a tiny internal device that is surgically inserted into the mastoid bone in your skull and an external unit that fits behind the ear on the side of your head containing a speech processor, microphone, magnet, and transmitter. The external device is usually charged overnight.

The operation is done under a general anesthetic, where the surgeon inserts the internal device under the skin into the mastoid bone at the side of your head and then makes a small opening in the cochlea to thread in the electrode of the internal device, and then the skin is stitched closed. The cochlear implant patient can generally go home the same day but cannot drive because of the anesthetic. For a brief time after the procedure, recipients might feel some pressure or discomfort over the ear that has the device and experience dizziness or nausea. Expect to go back to see a member of your cochlear implant team in the first few weeks to check on healing.

The device is not turned on when it is first implanted. This is done about 4 weeks after surgery by an audiologist. At this time as well, he adjusts the sound processor to fit, checks the parts to make sure they are working properly, performs tests to find out what sounds you can hear so the device can be set for your best hearing, and teaches you how to care for and use the implant successfully.

At first, speech and everyday noises around you will not sound the same as you might recall them, and it takes time to train your brain to understand speech and the new sounds you hear through the cochlear implant. This is an ongoing process, and it is best to wear the speech processor anytime you are awake, but you do have to take it off while swimming or showering. Regular, often lifelong, follow-up visits will help you get the most from your cochlear implants, and these visits include checking your hearing, programming the device, and doing other testing.

Everyone who receives a cochlear implant will have slightly different experiences, and improving what you can recognize takes practice and patience. The cause of your hearing loss can affect how well they work for you. Some factors include the length of time you have had severe hearing loss and whether you learned to talk or read before hearing loss.

I believe that one of the big advantages I have had in this process is not being able to see, because I am not distracted by struggling to read lips instead of focusing on what my ears are telling me. Those who have learned lip reading, many just because they figured out enough to guess at what was said, find they cannot stop looking at the lips, so they are not truly focused on what they are hearing. Others go into the operation with high expectations and so much hope for a positive outcome, that when the hill they have to climb to reach their goal is so much steeper than anticipated, they give up wearing the implant processor altogether and never progress. Some people are put off by the hard work and slow progress they are making and simply give up practicing.

Because I was born blind but was able to hear, I have always been able to talk. By the time I received my cochlear implant operation, however, my hearing was reduced to the point where I had only two ways to receive information, with braille or using a sign language called British Two-Hand Manual. With this communication method, the intervenor holds one of my hands, and with the other, forms letters, words, and phrases by touching my fingers and various parts of my open palm.

It is important to have a person who can collaborate with you to help you identify the sounds you are hearing. Compared to many people I have talked to about their experience after getting the cochlear implant, I feel like I had a much greater challenge struggling to understand speech than some others. After the operation, the speech I was hearing sounded so different from what I remembered when I was able to hear more clearly, that I could not recognize words that were spoken. Even if I was given the same word to read in braille and someone repeated it, I couldn’t recognize the word.

It was a long and frustrating process, but I kept practicing and training my brain to make the right connection to the sounds around me. I began to recognize some simple sounds. For example, I knew when water was running into the sink. I loved to take a glass of water and gently tap it with a spoon and listen to that sound. When I filled three glasses with different amounts of water, I began to recognize the higher or lower pitch of their sound when each was tapped. I played with pots and pans, just like a child would. I could hear the click sound of a blinker in a car when we wanted to indicate a turn in a certain direction. I could hear a bird singing, once someone told me it was a bird. One of my favorite sounds was the sound of washing dishes. My intervenors would make sounds in my kitchen. For example, they would open a cupboard and close it, and tell me what they did, and go back and do it again. Then they would open a drawer of utensils, then close the drawer and come and sign what they did. Then, after having given me 3 or 4 different sounds, I would guess which activity they did. We kept repeating this until my guess was correct consistently. I had to learn what the doorbell sounded like. I would do things in the house while the intervenor would wait for a few minutes and then ring the doorbell. The intervenor would have to do this several times before I would register that the doorbell was ringing. I recall the first time I used a knife to cut vegetables to cook. I realized, everything I did had a unique sound associated with it. I had forgotten this. When I walked, I heard my feet on the rug or the different sound walking on tile. The sound of my dog when she was on tile was loud. I had to be told what that sound was the first time I heard it. I did these things to teach myself to recognize the differences in the sounds and not to be upset that for so long, I couldn’t understand speech.

Every day, when my husband came home from work, we would listen to CBC news together. I would concentrate, and when I thought I heard a certain word or phrase, I would speak that aloud and if I were correct, he would sign “Yes.” Weeks went by. I was just sitting down to listen to the news, when, as clear as a bell, I heard, “It’s five o’clock.” I jumped up and screamed out what I heard, hugging David and saying again, “It’s five o’clock!”  And that was when I really knew I would understand CBC news again.

Listening to complicated music took approximately two years to do. I was not sure if I could learn to enjoy symphony music again, but my curiosity to see if maybe it would be possible kept me working at the task. I tried to listen to a small band, but my brain got so confused because it needed to work on just one instrument at a time. I listened to piano music until I could recognize a tune. Then I listened to guitar music in the same way. I did this with as many instruments as I could find until I could enjoy symphony music again.

I recall the first Christmas after receiving my implant. I would go into stores and try to figure out the song that was playing and I would guess wrong all the time. One day near the end of December, I was with my husband, David, and our son, Mike. We were in the men’s coat section of the Bay. I was standing there, next to Mike. David was trying on coats. I started to sing, “Sleigh bells ring, are you listening?” And then I cried. Mike heard me sing. We both were standing there in the coat section, crying, and then I would sing again! It was so remarkable I heard, “Are you listening,” after having listened for so many days of December!

Even with cochlear implants, it is harder to recognize voices; for example, comparing two women or two men. I notice that I can hear all the frequencies that are heard in speech, but the quality of the voice is different from hearing naturally.

There are some similarities hearing with hearing aids and hearing with cochlear implants. Noisy environments like restaurants or train stations are barriers when trying to communicate and people who speak amazingly fast or have heavy accents also pose communication challenges. I still must be near someone to understand them, about three feet away. I do not hear well if I am tired or when I am upset. My brain is not working well to allow me to concentrate on what is being said. Directional hearing to determine where a sound is coming from is not as accurate as natural hearing. Accurately judging the flow of traffic at busy intersections isn’t reliable. This fact means that crossing busy streets is dangerous. Sighted guides are necessary to be safe when travelling in such environments.

I can use the synthetic speech of screen readers when editing my files now and can hear well enough to catch most of the typing errors, but I still use braille and spell-check to be more accurate. I enjoy the fact that I do not have anything in my ear to hear, like the molds that many hearing-aids use. The magnet is placed on my head where the implant is, and that is how the two parts of the cochlear implant and processor work together. The external processor needs to be replaced as newer technology allows for improvements in the processor sound or the programs that customize and control it.

The initial cost of the cochlear implant and processor is covered by the provinces that have a cochlear implant program. After the warranty of the cochlear implant processor has ended, the cost for each cochlear implant processor must be covered by insurance. When the time comes to upgrade to a new cochlear processor, that cost is not covered by the government. Some programs exist to assist individuals at lower income levels.

I have met 30 people with cochlear implants who have all told me how happy they are with them. However, I have also met a few people who have not done well after having their implant. I know that the reason they have not done well is because of lack of patience in trying.

All the testing that a cochlear implant clinic does helps the staff in the clinic decide if a person has the right situation to be successful. Conversations that the clinic staff have with people help to determine whether the person has the motivation to succeed. This is important, but there are also medical conditions that must meet specific criteria before the decision is made to offer a person the option to have a cochlear implant operation.

When a person struggles to hear after losing hearing, and hearing aids do not help to improve hearing, it is wise to find a cochlear implant clinic to have a special test to determine whether the loss of hearing in one ear is significant enough for the person to be a possible candidate for a cochlear implant. The testing process takes several visits and following each test, the staff knows whether you would be reasonably successful. The first hearing test might show that your hearing loss is not at the level yet to need a cochlear implant. But that test is valuable, because if you experience more hearing loss, they have the first hearing test to refer to.

Now that I have used a cochlear implant for 22 years, I can honestly say that I wish I had gone to a cochlear implant clinic at least ten years earlier. We try so hard and go through so much stress trying to hear. We get closer to the speaker; we make guesses at what others are saying; and we learn to control background noise whenever possible. I hope that some people who read this and have had hearing loss for a number of years will consider visiting a cochlear implant clinic, one whose role is to assess candidacy rather than just sell hearing devices. Remember that though a hearing clinic does want to help you, they are in the business of making a profit. This question remains and needs to be carefully considered: How much will you gain from the thousands of dollars you spend?  They may help you, but a cochlear implant, combined with rehabilitation, can give you greater clarity and a lifetime of stable hearing, unless your hearing improves. With work and practice, the things you could not make sense of at first can become clear and understandable in the end. Nothing in my life has made such a vast difference in my overall health and well-being as having these devices. Although my hearing remains impaired, I do much better with cochlear implants than with hearing aids.