What It's Like to Get a Cochlear Implant as a Young Adult
When I was researching getting a cochlear implant, I wanted to know what the surgery itself was going to be like. I had never had surgery before in my life, so I had no previous experience to draw from. But all I could find on the Internet were stories about life after being turned on, after all the trauma and the planning to get it. So here is my version of how it goes.
Keep in mind that these are one person’s experiences and may not reflect the experiences of every person who receives a cochlear implant. Some people experience problems with their implant that require it to be removed and not reinserted. Others have great experiences and have nothing but positive things to say about their implant. The important thing is that my experiences with getting my implant are unique to me, and may not be your experiences.
I did not decide to get my CI until after my grandmother’s passing. Her death made me realize all the times I had missed out on conversations with her and other people in my family. I no longer wanted to be left out just because I am deaf. I had been wearing dual hearing aids for years, but they had proved less and less helpful as I got older.
My parents are the reason this became a reality. My mom made multiple phone calls and my dad, who is a doctor, asked around in his network, trying to find a surgeon who had experience with cochlear implants. The first doctor we met with didn’t feel he was the right fit for me because he generally works with children. But he was able to refer us to the surgeon who would eventually do the implant.
I had to be evaluated for a cochlear implant first, though. This required three things: an MRI, an electrode test where they mapped my auditory nerves, and a regular audiology test where I raised my hand if I heard a beep. I was pronounced fit for implantation, but then I had to choose which cochlear implant company I wanted to work with.
I had three options: Cochlear America, Advanced Bionics, and Med-El. Cochlear America is the oldest company, Advanced Bionics had some cool extras I got excited about, and Med-El’s biggest improvement on the general design was that you don’t need to have your internal implant removed surgically before receiving an MRI. The other two companies cannot offer this option because Med-El has patented the design. Since I’d already had to receive an MRI, I knew how unpleasant the experience is, and adding surgery to do it wasn’t appealing. My father also pointed out that nearly every person needs an MRI at least once in their lifetime, and it’s a safer tool to use than a CAT scan. So after much dithering, I chose Med-El.
One of the most fun parts about getting my cochlear implant was getting to pick out the colors for the external sound processor. The external sound processor is the visible part that makes the implant “hear” for me. I already knew I did not want plain white. I knew a lot of deaf people at my university who had plain white sound processors. My boyfriend and I played with the different options on my computer. My boyfriend favored Ice Princess colors (white and baby blue) while I favored black with another color. I was getting three processors, so I eventually settled on black and orange, black and blue, and plain gray.
We first scheduled my surgery for a few days before Christmas 2015. However, the morning I was supposed to have surgery, my surgeon fell ill and his staff forgot to tell us until we had already driven to the hospital in Chicago. Considering it was an hour’s drive each way and it was before dawn, my parents and I were understandably upset. I even briefly considered cancelling the whole thing rather than rescheduling, but we did wind up rescheduling for the second week of January.
Not being able to eat or drink in the hours before my surgery sucked! I also had to have a shirt that could be easily put on without snagging on my head bandage, which meant I had to borrow a button-down blouse from my mom since at the time I mostly owned T-shirts. It’s very lucky we are close in size.
It was still dark when we left the house for my new appointment, and the closer we got to the hospital, the more anxious I became. I tried not to think about the surgery at all. I went elsewhere in my mind. In my head, I was warm, safe, being cuddled by my boyfriend, and nothing bad was going to happen.
Once we got there, we still had to wait another 20 minutes or so after I had filled the intake forms out. This time, we knew for sure the doctor was in because he had made sure to let us know. To kill time and keep my mind off things, I texted my boyfriend updates. My parents were unusually quiet and were staring at me and me at them when I wasn’t looking at my phone. When the surgeon finally came out to take me in back, my dad asked if he could be in the operating room while they were doing the surgery. I briefly felt a ray of hope, but the surgeon said no, unfortunately that wasn’t going to work. It wasn’t like I would have been able to see my dad anyway, since I was going to be knocked out for the duration.
I was taken to the preparation room, where I stripped down and put my paper gown on. They weighed me, got my height, made sure I hadn’t taken any medications that could conflict with what they were giving me, and then my parents were allowed to come in back. An “R” was drawn underneath my right ear in permanent marker so they would remember which side they were implanting, which made me unreasonably nervous.
I had to give up my glasses and hearing aids to my parents for safekeeping. At that point, I felt truly naked and alone. Without my hearing aids, I could not understand anything at all around me. I had to put my trust entirely in people who couldn’t communicate with me. Then the moment I had been dreading finally arrived. I tried to distract myself from the prick of the needle in my arm by talking about whatever popped into my head while my mom held my hand. My parents talked silently over my head as I descended slowly into blurriness and then finally, sleep. I remember thinking that was the last time I would ever see my parents, which of course it wasn’t.
I was still in the operating theater when I woke up again, and the surgical team had just finished unhooking me from my sedatives. They were blurry dark heads bobbing against a white background, almost alien in nature. I couldn’t hear anything out of my right ear. I hadn’t been totally deaf in that ear before implantation, but now I was. My mouth was dry. It felt like I hadn’t drunk anything in a week. So I tried to communicate that to my surgical team. I shaped my middle three fingers on my right hand like a “W” and tapped my forefinger against my chin, the American Sign Language word for “water.”
Unfortunately, my surgical team didn’t know any sign language, so they didn’t respond. So I worked up whatever moisture I had left in my mouth to ask for it verbally, but I didn’t understand their response. It wasn’t until I had reached the recovery room and my mom, who was waiting for me there, that I learned I couldn’t have water right away because they wanted to monitor me first. So I got ice chips instead.
I was extremely dizzy that whole day. In the car on the way home, I lay sideways in the backseat with the seatbelt wrapped around my waist, even though that is not generally considered safe. In addition to being dizzy, I had a headache and I felt like I was going to throw up. When I got home, I did throw up multiple times. My mom had to stay with me when I was in the bathroom because I was too weak to walk on my own and she was worried I would fall off the toilet. I wasn’t able to keep anything down for hours. Sitting up made me nauseous, moving made me nauseous, but lying down all day was boring. There was talk about taking me back to the hospital, but I finally managed to keep some vitamin water down.
That night, my mom shared my bed with me so that she’d be nearby if anything happened. I couldn’t go to sleep right away, even though she dozed off immediately. I sat there staring at the wall and wishing the pain would go away. My pain meds were not 100 percent effective. Plus I had already slept through much of the day. But finally, I drifted off.
I had bad swelling over the right half of my face due to the pressure bandage I had to wear to keep my surgical wound closed. I had tinnitus – phantom ringing – in the ear that had been implanted. Once the bandage was removed, my right ear looked weirdly pointed away from my head, and there was talk of having cosmetic surgery to correct it. However, in the weeks after my surgery, the swelling in my face went away completely and the ear returned to an almost-normal position.
The day I got my external sound processors would have been six weeks after surgery. The problem was, I would be back at university in New York by then. I was recovering well and was generally healthy, so I was allowed to have my processors turned on around three weeks after surgery.
The first thing I heard when I was turned on was my mother’s voice, but she was quiet and not as clear as I was expecting. I discovered that I had to turn my head to pick up sounds with the processor that were happening on my left side, which is where my mom was sitting in the audiologist’s office. We played with different sounds, like clapping. I clapped my hands by both ears and immediately noticed a clearer improvement on my implanted side. I also did a lot of finger snapping next to my processor just to see what it sounded like.
Environmental sounds are what improved the most for me. The sound of dishes clattering together is one of the most annoying sounds I have ever heard. I can now hear an ambulance or a fire truck from a distance when I could not before. I can’t ignore water running anymore. If I have my back to my pet guinea pigs, I can still hear them squeaking. I hear the voices of birds and the rustling of trees every time I go outside.
I still struggle with conversations, but I have gotten better as my processor’s volume has been adjusted and I have adjusted to wearing it. I can now have a complete verbal conversation with one person in a quiet room, which I couldn’t do before. Make it a group conversation, though, and I’m as lost as I was before the implant. I pick up the odd words here and there when people are having conversations around me, but I don’t usually get the full context. With people I don’t spend as much time with, they have to be looking directly at me and speaking clearly or I won’t understand them. With immediate family I have discovered the art of talking to people while not looking at them. I do this a lot with one of my brothers. We’ll have our backs to each other and just be talking about whatever and understand each other completely. This was definitely not something we could do before!
When I take the processor off, I am still deaf. Sometimes I take it off just to have some peace and quiet. I also have to remove it when I sleep and when the batteries die. I cannot wear it in water. I can’t go near strong magnets (which fortunately isn’t a common occurrence.) I have to take it off if I go on a roller coaster. I have had children try to grab it off my head, which is the only time I ever grab a kid’s hands and say, “No!” (I’m normally very accommodating to whatever kids want to do.) My CI sometimes gets stuck in my hair or falls off unexpectedly. The area where the external magnet attaches to the internal magnet gets itchy a lot. But all of these are minor annoyances.
I am happy I got my cochlear implant. It has made me a functional member of society for the most part. I wouldn’t say it’s made me into a hearing person, because it hasn’t. But it has made me feel more confident about my everyday life. And that makes all the difference for me.
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