Born with Usher Syndrome - but now Jaakko can hear again thanks to cochlear implants

Jaakko lives in Tampere and works as a Content provider at the Finnish Deafblind Association. He has a visual and hearing impairment caused by Usher Syndrome Type 3. Usher Syndrome is a hereditary disease that leads to both visual and hearing impairment. There are different types of Usher Syndrome. Type 3 means that vision and hearing deteriorate gradually from childhood or adolescence.
As a young adult, Jaakko used hearing aids. At that time, everyday life was still functional, and he could hear relatively well. His vision was also relatively unchanged. But in his 30s, his hearing deteriorated further, and he had difficulty hearing speech and sounds in noisy environments. It was difficult to participate in conversations with several people and to find himself in challenging social situations with a lot of noise. He began to withdraw and prefer quieter situations.
How did he find out about cochlear implants and what were his expectations and fears?
When Jaakko first heard about cochlear implants (hearing implants), he thought it sounded a bit crazy. It was a whole new world that felt scary. But the fact that Jaakko early on already knew others who were hearing with cochlear implants helped. He learned a lot from them and was able to ask all the questions he had in mind. What was the world like for them? They shared that their daily lives had improved, and they had good experiences. Overall, they could hear much better than before.
For Jaakko, the most important aspect of undergoing cochlear implant surgery was that he would be able to hear in noise again. He knew that his vision and hearing were gradually deteriorating, but now there was an option to help him improve his hearing.
Jaakko underwent an assessment for a cochlear implant. He was nervous about the surgery and wondered what his hearing would be like. Will I lose the little hearing I have left? Will I be able to hear again at all?
In retrospect, Jaakko says he worried unnecessarily. Everything was fine. The surgeon and other healthcare professionals were encouraging and supportive. But most importantly, he was supported by cochlear implant users. There were no obstacles left.
How is his life today with a cochlear implant and what is his advice to others in the same situation?
Life today, with cochlear implants, is much easier than it was before with hearing aids for Jaakko. For example, he doesn't have the whistling that was a problem towards the end with strong hearing aids. Jaakko hears much better now in noisy environments and in group conversations. He doesn't get as tired in everyday life. With cochlear implants, new situations and environments have arisen where he can now hear. Such as when swimming or sitting in a hot tub. With cochlear implants, you can protect the device with a water protection. This was not possible with hearing aids.
Jaakko's advice to others in a similar situation as he was in before is:
“If your health care professional thinks you are a suitable candidate for a cochlear implant - consider it. Think about whether you have something to lose. Do you want to be more present in social situations or group conversations? Cochlear implants may be able to help you to improve your hearing and quality of life.”
About cochlear implants
A cochlear implant is an electronic device that improves hearing. It can be an option for people who have severe hearing loss from inner-ear damage who are not able to hear well with hearing aids. Unlike hearing aids, which amplify sound, a cochlear implant bypasses damaged portions of the ear to deliver sound signals to the hearing (auditory) nerve.
Cochlear implants use a sound processor that fits behind the ear. The processor captures sound signals and sends them to a receiver implanted under the skin behind the ear. The receiver sends the signals to electrodes implanted in the snail-shaped inner ear (cochlea). The signals stimulate the auditory nerve, which then directs the signals to the brain. The brain interprets those signals as sounds, though these sounds won’t be just like natural hearing.
Read more about treatments for hearing loss and cochlear implants
How cochlear solutions works: bit.ly/40RTLlW
When to consider implants: bit.ly/40OTHn5
The Cochlear Nucleus System: bit.ly/49Pl6Jp
Get in touch with Cochlear or with a volunteer: bit.ly/3SQzj2Z
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