When my device was turned on, I hated it.
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My cochlear implant failure and upgrade success
Wednesday, February 21, 2024
When I was five, I lost my hearing suddenly. My parents began a very long search to find a surgeon and hospital who could treat me.
Even though CI surgery wasn’t yet fully approved for kids at the time, Dr. John Niparko at Johns Hopkins Hospital in Baltimore, Maryland was willing and more than able to perform the surgery. After a few months of trying hearing aids which were useless, I received my first cochlear implant at six years old.
Losing my hearing
Hearing loss can be scary. There are lots of unknowns and difficult emotions to navigate. How do you communicate with people? Will you be able to have a successful life and eventual career? Will people understand when you say that you’re deaf? Will people treat you differently? What will life look like? I could go on, but one of the most important things to remember is that every case is different, and your life is what you make it.
As someone who lost their hearing at five years old, I was lucky. I wasn’t old enough to fully grasp the significance of what happened, so I didn’t know to be scared for the future. I was scared, however, as a kid would be, when such a traumatic event happens. For months after losing my hearing, sleep was difficult. I had woken up deaf, and became terrified that I’d wake up blind one day as well. My family was so supportive. They started learning sign language, made sure I could read their lips when they talked, and reassured me as much as I needed.
My first cochlear implant surgery
In 1996, I underwent my first cochlear implant surgery at Johns Hopkins Hospital, the premier place for all things cochlear implant-related. I consider myself lucky that this was where I began my journey. The surgery was about four to six hours long and went smoothly. I remember waking up, being nauseous, and watching Winnie the Pooh while biting a blue freeze pop to help with the nausea.
I stayed in the Children’s Hospital for about a week, since the surgery was in-patient at the time. I had my head wrapped in bandages with a little pink bow since I still wanted to be cute. I didn’t have much nausea or direct pain immediately after. My head felt super heavy and hard to keep up, but that was really my main symptom, as far as I remember. I needed to slow down and just let myself heal. And even though I was six, it was actually surprisingly easy, despite being confined to the hospital.
When my device was turned on, I hated it. Everything was incredibly loud and unfamiliar. It had been a year or so since I’d been able to hear anything, and all of a sudden, I could hear everything. It was so overwhelming, and all I wanted was to retreat back to silence.
Over time, I got used to it. Sounds got more “normal” and less painful. Eventually, I began to really hear and understand what I was hearing again. My speech had significantly deteriorated by that time, since I couldn’t hear myself enunciate when I was without a cochlear implant. I went through lots of speech and listening therapy.
It took a long time to get back to a normal hearing level. Over the years, however, I usually placed in the highest percentiles on all my tests in my follow-up visits. For all intents and purposes, I was a “poster child” for Advanced Bionics. I consider myself very blessed, as I know this is not the case for everyone getting a cochlear implant. My doctors and audiologists all said my stubbornness and competitive nature really helped, honestly!
I used the C1 internal cochlear implant for about 26 years. It first came with body-worn processors, and then the first behind-the-ear processor in the early 2000s. I’m amazed at how small the technology is now!
Signs of failure
By 2021, my device was showing signs of failure. We’d already turned a channel off because it was sending random signals to my brain, making me even more easily overstimulated than I already am. I had switched to an audiologist in North Carolina, since that’s closer to home. I began talking to my audiologist and the surgeons there about a retrofitting/revision surgery.
They were hesitant at first, since my device was still working, and there really was no sense in jeopardizing my hearing with surgery at that time. The surgeon was also wildly interested in how long my implant had lasted. Since most only have an internal life of about 20 years or so, the temptation to see how long mine could last was real!
Over the course of the next year, it became apparent that I needed to schedule the surgery, so that I wouldn’t run into the issue of my device failing mid-life, which would cause me to not be able to work or live optimally. Besides, I was 31. I wanted to have the surgery sooner so my brain would still be young enough to adapt easily to the massive shift in technology from C1 to the new device. Knowing that I might not ever hear as well as I did at that time was frightening, but I didn’t see much of a choice. It was a risk I was going to have to take.
Artwork by Danielle Williams
The second surgery
In October, 2022, I underwent surgery again at UNC Hospitals in Durham to get a new implant with the current technology, which is the HiRes Ultra 3D cochlear implant with Marvel CI sound processor. The surgery is now out-patient, which was amazing to me! It was still a few hours, and still had a lot of the same protocol, but the incision was so much smaller. They also didn’t need to shave a large portion of my head like they did in 1996. After surgery, I woke up, had almost no nausea, and very little pain, but was pretty loopy due to the anesthesia. I was discharged within an hour or so of waking up, and we were able to go home the same day.
The hardest part of the first couple weeks was slowing down. I couldn’t turn my head quickly; I couldn’t walk too fast; and I needed help with balance for the first week or so. Four weeks after surgery, I was able to have the device activated. And once again, I hated it. Even more than last time. Nothing sounded like I was used to. Everything sounded extremely high pitched, unintelligible, and like birds chirping in my head all the time. It was honestly dreadful, and I absolutely freaked out.
Fortunately, my husband was so incredibly sweet and supportive. When I was going through the uncertainty and unease before the surgery, he reassured me that we’d still have a happy marriage and life together, whether I could hear him or not. He went with me to the surgery and took the most excellent care of me afterwards. He was such a rock in my recovery process, dealing with me crying and struggling so much, even though we were just months into our marriage.
I wish I could say that my “normal” level of hearing returned quickly, but it didn’t. It took a solid five to six months for things to sound “normal” or even pleasant again.
I wish I could say that my “normal” level of hearing returned quickly, but it didn’t. It took a solid five to six months for things to sound “normal” or even pleasant again. It took a lot of perseverance and included tons of nights when I broke down crying and thinking I’d never hear the same again. I was worried that voices would always sound high and altered, and I wouldn’t hear clearly. I was so incredibly scared of never hearing my husband’s voice as I used to.
“Better than before”
My husband encouraged me to trudge on, trust the process, and stick with it. Each time I went back for testing, I did a little better. We made small adjustments to the device, and I began experimenting with the Advanced Bionics app, and using the Marvel Bluetooth streaming capabilities. It took a few months, but I began to like the Bluetooth streaming, and I was getting used to how things sounded.
My husband is a professor of theater, and he was performing in Guys and Dolls about five to six months after my surgery. I went to the performances, and almost cried when he sang, and I could finally hear his usual voice again. It was so overwhelming, but in a positive way. Since then, sounds have become even more normal.
I’m very used to the app now, and use the Bluetooth streaming feature daily to talk to people on phone calls, attend Zoom meetings, and listen to music. I listen to music a lot, since the app allows me to pick and choose precisely how much of the background I still want to hear. This helps me to be aware of and stay safe in my environment. It softens really loud background noise, and I can still enjoy the music. My husband also likes it since I can turn the streamed audio all the way up. And if he is driving on a road trip, he can listen to whatever he wants, while I listen to whatever I want simultaneously!
Artwork by Danielle Williams
If you’re someone who, like me, was implanted years ago with C1 technology and needs to have surgery for the new technology, it’s scary. I know. But I’m here to tell you that it does get better again. It takes a while, so you have to stick with it, and suffer through the early stages. It is very possible to hear even better than you did before. I think I’m finally entering the “better than before” stage, a year after surgery. I don’t even remember the differences between how I used to hear with the old device and how I hear now—that’s how similar it is! I do hear some higher pitches and softer noises more with Marvel CI, though. And that’s not usually a bad thing, either! My audiologist told me right at the beginning of the reimplantation process that it would take a year to hear super well with the new device. How right she was!
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