HearPeers mentor Anette from Denmark was born with normal hearing. In her mid-twenties she suddenly lost her hearing on one side and had to learn how to deal with everyday life with single-sided deafness. But that was not the last diagnosis she got: Her hearing in the other ear was threatened by an acoustic neuroma. In today’s guest story she shares her hearing journey and talks about the long journey from being diagnosed with sudden hearing loss to becoming a bimodal cochlear implant and hearing aid user.
My name is Anette and I live in Denmark. My hearing journey began when I was in my mid-twenties. Born with normal hearing, I suddenly lost my hearing in my right ear and suffered from vertigo and tinnitus. I went to see various doctors and hearing professionals, and after many tests and scans I finally knew for sure: The hearing in my right ear would never come back. They could not find out the reason for the sudden hearing loss, but it was clear that I would have to learn to live with my single-sided deafness.
Life With Single-Sided Deafness
Some experts told me that for many people sudden hearing loss is harder to cope with than slow, progressive hearing loss. For me, that was definitely true. From one day to the next, all communication became difficult: I always had to turn my head to the person speaking to me and if there was more than one person talking or background noise like music, for example at social gatherings, I had a very hard time following the conversation.
Music sounded odd and I could not appreciate it anymore. Everyday life also became more exhausting and dangerous: Since I could not localize sounds anymore, I was not able to tell which direction a car was coming from when crossing the street.
All the familiar sounds now turned into a chaos of noise that my brain could not handle anymore. I tried a CROS hearing aid that sends sounds from the deaf ear to the good ear, but unfortunately that did not work for me. Step by step, I felt more and more isolated at home.
New Diagnosis, New Challenge
But after some time, I got used to my new life and my social life picked up again. It was challenging and often exhausting, but I managed. Since I had become very dependent on the hearing in my left ear, I noticed immediately when something was not quite right on my left side. After 10 years of being deaf on my right side, I suddenly also lost my hearing on the other side and was basically completely deaf. I went to see my ENT and was soon confronted with a new diagnosis: I had developed an acoustic neuroma, a benign tumor, on my left auditory nerve.
I had to undergo surgery to remove the tumor and save my hearing. The doctors managed to save my residual hearing and I could slowly hear on my left side again with a hearing aid. Unfortunately, they were not able to remove the tumor completely, and there was now a constant risk of losing my hearing. Therefore, I was offered a cochlear implant on my other, deaf side.
CI + Hearing Aid = More Quality of Life
14 years after the sudden hearing loss, I received a CI on my right side. My surgery was in late 2016, and I was activated just before Christmas. I got to choose the brand of cochlear implant, and I immediately went for MED-EL. With my acoustic neuroma I knew I would need an MRI at least once a year. With the MED-EL SYNCHRONY implant, getting MRIs without magnet removal is possible and that was – and is – very important to me. I use RONDO, a small single-unit audio processor, with my CI because I prefer the comfort of having an off-the-ear processor.
Right after activation the sounds coming in through the CI were weird, I could only hear a crackling sound. But very quickly it got better! At first everything started to sound better and step by step I was able to understand speech, also thanks to daily practice. On my left ear I still wear a hearing aid, so I am a bimodal user. I really like the combination of the sound of the CI and the hearing aid! However, for understanding, the implant is essential. I can follow what the people sitting to my right say much better, I can localize and actually hear sounds with the CI that I can’t with the hearing aid. When I listen only with the cochlear implant, I can understand speech, even without lip-reading.
My Advice For Others
When I was in the decision-making process, I got invaluable support from people who use hearing implants. No one understands you better than someone who has been through this themselves. Now a CI user myself, I want to support others the way I was supported four years ago. That’s why I am part of the HearPeers Mentor Program and am happy to share my experience with other cochlear implant candidates and potential bimodal users.
If you or one of your loved ones are about to choose a cochlear implant brand, make sure to talk to other users and representatives of all the brands before you make a decision. Ask about the technological side, for example the electrode array. In my opinion, the quality of the internal implant is the most important factor. It will stay with you for a long time. You can always upgrade your audio processor to the latest technology.
I didn’t consider how my hearing aid would work with my cochlear implant. I think it’s more important to choose the best CI for you first. You can always get another hearing aid if it doesn’t work with your CI. With my MED-EL implant, my hearing aid works great!
Thanks for sharing your story, Anette!
As HearPeers mentor Anette supports other people in Denmark in their decision-making process and is happy to answer their questions about hearing loss, getting a CI and life as a bimodal user. If you want to get in touch with a HearPeers mentor in your country, please head over to the HearPeers website.
Do you want to learn more about the benefits of using a MED-EL cochlear implant with your hearing aid? Or how a cochlear implant can help with single-sided deafness? Head over to our website or get in touch with us directly on Facebook.
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