User Stories

“I Miss Something When I Only Wear One Processor”: Jannette’s Story

For many years, Jannette from Germany was ashamed of her hearing loss and withdrew further and further from life. Until she decided to change something and went for cochlear implants. In today’s guest article, she talks about her journey to bilateral cochlear implants and why she wouldn’t want to go without them again.

I’m Jannette, I’m 40 years old, and I’m from Germany. Hearing loss has always been part of my life: I’ve had profound bilateral hearing loss since I was a child. Unfortunately, I don’t know the exact cause of my hearing loss. I was also never really aware of how poorly I actually heard. How can you miss something you don’t know? It was only later—at school and at work—that the gaps became clearly visible, especially when it came to speech comprehension. I hardly understood group conversations, avoided telephone calls, went out less often, made up excuses for my absence and built walls for myself to cover up my hearing loss. I was embarrassed by hearing aids and my disability in general.

At the same time I consciously and unconsciously taught myself to recognize what was being said with eye contact, lip reading and from context.

But at some point I realized that I had to do something if I wanted to actively participate in life again. My daughter was my biggest supporter during this time.


My Cochlear Implant Journey

And so, starting in 2016, I actively started to look into cochlear implants. I got to know other cochlear implant users through social media with whom I could regularly exchange ideas. This made my decision easier.

I read lots of stories from CI users and relatively quickly decided to go for MED-EL: It was the long-term reliability, MRI safety and wearing comfort that convinced me. For my first audio processor I chose a white SONNET.

Finally, in January 2019, the time had come: I received my first implant on the right side. After the surgery, I watched a time-lapse video of a cochlear implant surgery on YouTube and was amazed at what technology makes possible. Since the hearing journey with a CI is a learning process, I knew I shouldn’t have high expectations. Of course, I tried, but it didn’t quite work out. I was still disappointed the first few days after the initial fitting.


Step by Step to Listening Success

But that was soon to change: With each day and practice in everyday life, sounds became clearer and more distinct. For the first time in my life, for example, I heard birds—that was an indescribably beautiful feeling. I discovered what sound a woodpecker makes, what sound an eagle-owl makes, and what a jay sounds like.

And finally the time came when I understood much better: In the cinema. In everyday life. Talking on the phone no longer scared me.

Conversations in the car—previously impossible due to lack of eye contact—are no longer a challenge, regardless of driving speed. My first music concert was overwhelming! After almost two years with my fist CI, I can currently enjoy a speech understanding of 90% on the right. I have started playing the piano and now spend some time every day sitting at the instrument in the living room. And this not only makes me happy, but also my family and friends, as communication has become so much better.


Next Step: Bilateral Cochlear Implants

At the time of my first implantation on the right, I only had a speech comprehension of about 15% on the left side, so it was already clear that the second ear should also be fitted with a CI. Nevertheless, I decided to get used to the first one and to have the second surgery in the fall of 2020: My journey to bilateral hearing began. I was very excited and a little worried that this great feeling of hearing with a cochlear implant would not be as good when I went bilateral. Looking back, I see that was nonsense. Why should it get worse? It could only continue to get better.

With the second surgery, everything was much more relaxed. I drove to the hospital relaxed, joked with the anesthesiologists and even afterwards there was only one side effect: nausea because of the anesthesia. Otherwise no pain, no dizziness, no loss of taste. The scar healed quickly and without any problems.

And so in November 2020, getting my SONNET 2 fitted on my left side was on the agenda. And what can I say? I was overjoyed and just thought, “Hello mechanical voice!”

That may sound strange, but that sound brought back memories of my first CI and those were good and wonderful times. I was thrilled. Many CI users report a Mickey Mouse-like voice, but I can’t confirm that. For me, everything echoed a bit, it clanged. But pretty quickly everything sounded natural to me again. Even if with a little echo.


Life With Two Cochlear Implants

I was advised to wear the new audio processor on its own from time to time. It helps the learning process when we train the brain not to only concentrate on the strong side. I can absolutely confirm this. When using both my audio processors, I hardly noticed the left CI at first. It was somewhat strenuous and I was often tired. I was also warned during the consultation that the constant learning would tire me at first. My piano lessons have had to take a bit of a break since then, as I couldn’t hear the notes the way I was used to. Soon, however, they will continue and I think that playing music will help with the learning process.

However, I understood the news or audiobooks quite quickly, especially when I used an audio cable to connect directly. I had the feeling that everything went a little faster than with the first CI. And I was right: After three weeks, I had a speech understanding at 65 dB of 30% and soon after this went up to 70%! This is an above-average result, the progress became noticeable even faster than with the first implant and each side on its own is also really good.

When it comes to listening with both CIs, I am currently in the middle of the learning process. My speech understanding is still good, but I still have difficulties with directional hearing. But I am optimistic and know that this will follow soon. Music sounds richer, but not yet perfect. What is exciting, however, is that I am more aware of the range of sound development: I now experience the dynamics in orchestral recordings live (does an instrument come into the foreground or does it get out?). And I also notice loud and quiet as a means of expressing speech.

After only seven weeks of bilateral cochlear implants, I can say that I miss something when I only wear one. It is then no longer “round”.


My Advice for Others

With my experience, I can recommend in good conscience to anyone who is about to have cochlear implant surgery to be open to new things. And not to be irritated or insecure, because every hearing story and every hearing journey is different.

And of course: Enjoy the first time with your CI and the new world of sounds! Be surprised and excited by the new tones and sounds!

Because in the end we get used to new hearing very quickly and see this enjoyment as normal, although it is a small miracle. Therefore, I remember every moment of my journey with pleasure.

Thanks, Jannette!



Photos: Akka Fotografie (© akkafotografie)

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