20 Years of Cochlear Implant Experience

Sveta on left holding a new processor 20 years ago and on right wearing a current BTE. In middle 3 processors - a body worn processor used for 3 years, a first BTE used for 10 years, second BTE used for 7 years.

Today is 20 years since my first cochlear implant (CI) activation. I cannot believe how fast time flew! Also, I’ve been hearing with a cochlear implant for a half of my life! I wore hearing aids before that.

The picture above has me on the left wearing a body processor 20 years ago today after my first CI activation. On the right I’m wearing a current Harmony BTE (behind the ear) processor that I have had for 7 years. In the middle are three processors that I have worn during 20 years – a body processor for the first 3 years, then a first BTE for 10 years, then a second (and current) BTE for 7 years.

I wrote an article two years ago about my CI experience (where I explain about my deafness, process of getting CI, and 18 years of experience with it), so I suggest you to check that out first before continuing reading here. Not much has changed since I last wrote the article except that I tried a hearing aid a couple years ago.

Since I have only one cochlear implant in my right ear, I sometimes feel somewhat weird to hear from one side and nothing from another. I wanted to experience stereo sound – even if I wouldn’t understand any speech with a hearing aid in another ear. I haven’t heard anything from another side since my implantation – I stopped wearing hearing aids after my first CI activation 20 years ago. So I asked my audiologist two years ago to let me try a hearing aid for a month and see if I like it.

My audiologist picked the strongest hearing aid for my type of loss available on the market. I tested a Phonak Naida BTE (behind the ear) hearing aid. It was so weird to have such a small and light hearing aid because my cochlear implant BTE processor is large and heavy! I could hear some loud sounds with the hearing aid which was great, but not enough to enjoy stereo sound to the fullest. I got so used to hearing a wide range of sounds with the cochlear implant that I felt weird not hearing soft or high frequency sounds with the hearing aid (that I can hear with CI) even though I expected that I would not be able to.

Also, I had to crank up the volume all the way up as high as possible for the hearing aid which caused whistling that annoyed even my implanted ear, to say nothing about people around me hearing it, lol. So I could test the hearing aid only at home not to get unwanted attention with whistling. Even a new ear mold or a special program to eliminate or at least reduce whistling would not help solve the problem due to the type of my deafness.

I forgot about whistling associated with hearing aids as I don’t experience that with my cochlear implant. I also forgot what it was like to wear an ear mold all day. When testing the hearing aid, I had my ear itching by the end of the day – not a very pleasant sensation. Changing molds wouldn’t make a difference as I got so used to be mold-free for 20 years – one of perks hearing with a cochlear implant.

When testing the hearing aid, I could not believe how I could use hearing aids or tolerate ear molds prior to my cochlear implantation! The difference between a hearing aid and a cochlear implant for me is like night and day. With a hearing aid I can hear only a few loud sounds, while with a cochlear implant I can enjoy a wide range of sounds – from soft to loud. My deafness is practically off the charts, so hearing aids are no longer useful to me, even to detect sounds because there are not enough sounds for me to be able to enjoy with a hearing aid. With a cochlear implant, I may not have 100% hearing and would be considered hard of hearing with a mild hearing loss, but it’s still a big difference from a hearing aid.

So all those experiences coupled with a high cost of the hearing aid made me decide not to use a hearing aid on another side. For various reasons that I’m not getting into here, I am also not considering a cochlear implant for another side for the time being. So I’m content with hearing from just one side, but I’m glad to have the opportunity to test the most powerful hearing aid on another side.

A decision to get a cochlear implant 20 years ago was very difficult to me, and it’s not just due to the surgical part. If you were deafened at an young age and were going to be implanted 18 years later, there’s almost no guarantee that you would benefit from a cochlear implant beyond recognizing environmental sounds and getting some assistance with lipreading. So I was wondering what point would be for me to get a cochlear implant if I could have the same benefits from hearing aids. But after 20 years with a cochlear implant, I do see a major difference between a hearing aid and a cochlear implant for my type of deafness – even if I have almost no speech understanding without lipreading. I can hear a much wider range of sounds with a cochlear implant than with a hearing aid. Testing a new hearing aid two years ago proved me that I made the right decision to be implanted.

I still rely on visual access like lipreading, captions, sign language because I have almost no speech understanding by listening only. So cochlear implant is not a cure to my deafness, but it does enhance my experience – like when I listen to music or to a speaker along with reading captions. For some people, usually those who can understand speech by listening, cochlear implants may be a primary access to information and visual access secondary. For me, a cochlear implant is supplementary to my visual access to aural information. So everyone’s experience with cochlear implants does vary.

The only wish I have now is for a new, smaller, and lighter BTE, and so do many of my fellow users. I have had the current BTE for the past 7 years which I love but it’s heavy and makes my ear hurt by the end of the day – in the same way as heavy eyeglasses hurt your nose. Usually processors are upgraded at least every 5 years. However, the older your internal is, the longer you wait for a new processor to be made compatible with your old internal.

As someone who is profoundly deaf having almost no benefits from hearing aids and wearing a cochlear implant for 20 years, I would say that I never cease to be amazed by how much I can hear with a cochlear implant and how cool the technology is. The best thing about being a cyborg is that I have an option to turn on hearing or to enjoy the silence any time.