What’s it like to have a Cochlear Implant?

me with CII got my first cochlear implant (CI) in July of 2011, and my second in September of 2013.  When I was going through that time I wrote some about it but I’ve never talked about what it’s like to live with my cochlear implants (CIs).  A friend of mine asked me a few questions about it recently.  I’m here today to answer some of those questions.

What exactly is a Cochlear Implant? – To put it simply, a Cochlear Implant is an electronic device that can help provide a sense of sound to someone who is deaf or severely hard of hearing.  Let me see if I can explain this in my own words.  There is a part that is on the outside of the head that consist of a microphone a processor and a transmitter.  There is part that is on the inside that is the stimulator and the electrode array.  Sound comes into the microphone and goes through the speech processor to the transmitter  (the microphone and processor are the parts around the ear, the transmitter is the part that is on the outside of the head – it is held on by a magnet connecting it to the receiver/stimulator).  The stimulator is in my head, between the skin and the skull.  When the sound comes in to the stimulator it is then sent to the electrode array it then send impulses to the auditory nerves.  For a better explanation please go here.   (you can see the microphone, processor and transmitter on me in the photo at the top of the post – yes mine are orange -, and in the second photo below)

Cochlear Implant

This is a photo of the receiver/stimulator and the array. The array is the wire it is what goes in the cochlea of the ear and sends impulses to the auditory nerves. The stimulator is right on the inside of my head.  The transmitter connects to the stimulator by a magnet.

cochlear implant 2

This is a photo of a microphone, processor, and transmitter. You can readily see the microphone that hooks around the ear but there is one at the top you can’t really see. Many processors have microphones that are not readily seen.

Why did you get cochlear implants? – I lost my hearing due to Meniere’s Disease.  My hearing loss happened fairly quickly.  I was diagnosed bilateral in November of 2009.  In 2010 I got hearing aids, within 3 months of having my hearing aids I couldn’t understand anything out of my left ear.  That sent me on the tract to getting my first CI. (July 2011) By the time I received my first CI, the hearing in my right ear deteriorated to the point that my hearing aid no longer worked.  It took a little while, but I soon got my second CI.(September 2013)  Why did I get cochlear implants?  because that was the only way I would be able to “hear” anything.

How does a cochlear implant work? – I’m going to quote this straight from the National Institute of Deafness and other Communication Disorders site.  “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.”

Do you hear the same with a cochlear implant as a you do with normal hearing? – No.  Some people can understand words and sounds immediately, other people can only hear clicks and whistles.  It is a completely different way of hearing and your brain has to be retrained.  When I was first activated I could understand a lot of words from the start, but everyone sounded like they had been sucking on helium.  A lot of Donald Duck and Mickey Mouse voices were around.  Soon my brain started to remember what certain sounds sound like and I started hearing things the way I used to, for the most part.  When I hear something I’ve never heard before things can sound very odd.  Sometimes when I meet a new person their voice will get that cartoon sound until I get used to them.  The longer you use your CIs the better you hear with them, so 10 years from now I should hear better than I do now.

Do you now hear like everyone else? or is it odd?  What is your hearing like now? – This is the big question isn’t it? What is my hearing like now?   First I’ll tell you about challenges I have that a lot of people with CIs have, then I’ll tell you about my personal challenges.

I often can’t hear when someone speaks behind me.  If there is noise in the room I have a very hard time hearing.  (the newer CI’s are better for this, even though I have a newer CI I still have a hard time)  In groups it is very hard to keep up with what everyone is saying.  I am much better at conversing one on one.  I find I it is much easier for me if the person is facing me so I can read their lips while they are talking to me.  Between the two of those I do pretty well, but put me in a crowded room, and I’m lost.  Heck, put me in a room with more than one person and I can get pretty lost.

I think I might be able to hear better if I had more practice, I’m not sure.  Most of the time I only talk with Stuart.  I talk to my doctors.  I talk with our roommate, but I have a very hard time understanding him.  His voice is deep and I simply cannot understand most of what he says.  It makes things difficult, and sad.  But for the most part I don’t see anyone else.  Since we moved I haven’t met many new people, it’s hard to get used to groups and hearing other people when I don’t have the opportunity.  However, it’s also really hard to put myself out there in those situations because I get so lost and confused.  It does make meeting new people even more challenging.

Unlike most people with cochlear implants my hearing fluctuates.  Some people with Meniere’s who get CI’s end up still having fluctuating hearing.  Normally this happens when we have vertigo, our hearing will change and we need to get our CI’s adjusted.  My hearing doesn’t fluctuate just when I have a vertigo attack it happens every day.

Let me tell you what an average day for me is like.  I’ll get up and put on my cochlear implants, at first it takes me a little bit to get used to suddenly hearing sound.  Everything sounds a bit loud.  Then things will normally calm down and my hearing is stable for a few hours, but every evening my hearing will change.  It’s hard to explain what it sounds like, it gets hollow sounding and can sound way too loud.  I’m always telling Stuart to please be quieter.    Sometimes my hearing will change throughout the day.  I will often say, “I’m having a bad hearing day.”  I’m thrilled when I can say I’m having a good hearing day.

When I take my CI’s off the world changes.  Suddenly the only thing I can hear is my tinnitus.  (When I have my CI’s on the sound of the outside world helps me to not notice my tinnitus as much.)

I don’t know sign language.  I am working on learning some, but I haven’t been able to take a class.  At times Stuart and I can only communicate by me reading his lips and the little bit of sign language we know.

What is a challenge you wouldn’t normally think about? – This one is easy, having the headpiece suddenly fly off  because I got too close to something metal.  I have a bracelet that I wear sometimes and if I put my arm up around my head the CI headpiece (the transmitter) will jump off and stick to it.  It’s kind of funny, kind of annoying.   Other times when I want to lie down the headpiece won’t stay on.  This is annoying, especially when I’m sick.  I deal with vertigo better when I can hear what is going on around me since I can’t focus on anything, but during an attack I need to lie down, this often knocks my CI off and I can’t hear anything out of one ear.

Does it hurt? – Well the surgery hurt, but it wasn’t so bad.  It is actually an out-patient surgery.  Does it hurt on a day-to-day basis?  Not really.  If the magnets that are holding the headpiece to my head are too strong it hurts, but then I can change that.  I have screws that are very close to the surface right behind my ears.  One ear is worse than the other.  Most people don’t have this problem, normally when it heals fat and cartilage form around the screws and you don’t notice them, for me the screw is right up against the skin.  Sometimes this hurts.  Sometimes my processor and glasses will rub on them.  My sun glass arms are thicker than my daily glasses and they will cause that area to hurt.  If I can lie down on it, it hurts a bit.  Other than that, no it doesn’t hurt.  If I didn’t have the screw issue I really wouldn’t even notice I have them on.

Now I just have to share the funniest thing I’ve misheard due to my hearing loss–  Once I asked Stuart what Jesus was other than seen as a prophet and son of God.  The answer I heard was, “Jesus was Jimmy Buffett”  I busted out laughing.  “Whaaat?  Jesus was Jimmy Buffett??”  What Stuart actually said was, “Jesus was a Jewish Carpenter.”  I still get the giggles when I think about Jesus being Jimmy Buffett!

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15 thoughts on “What’s it like to have a Cochlear Implant?

    • I’m sorry Vincent, I really don’t think I’m ever going to understand you much more than I do now. Your voice is at a frequency that I just don’t hear well. It’s very hard for me.
      Stuart has tried to read to me before. I’ve had him try a few times when I’m having a vertigo attack to try to calm me and on the times when I’m just lying there spinning and simply bored. But I don’t understand much without being able to see lips.
      Facial hair makes it harder (Stuart has to keep his trimmed close and I’ve gotten used to it). and I’m sorry but your stutter makes it harder for me because I’m trying so hard to read your lips.
      It’s a very difficult situation.
      I would hope it would get better, but truthfully, I find myself shying away because it is so difficult.

      • Oh well. Hey! Maybe we can do a Sign a Day. I’ll find something new each day to share related to stuff we talk about or do.

        And I’m going to try speaking higher. Hmm. I wonder how much helium costs…

        • I’d really like to learn sign language. It’s a lot more than individual signs. Just like any language is much more than just words. And ASL does not have the same grammatical structure that English does.
          I appreciate you wanting to help.
          we’ll see how it goes.

  1. Thanks for sharing that. The implants seem kind of mysterious and magical to me.
    They have books on simple American sign language. I was an aide to a girl who couldn’t hear–goodness, about 30 years ago now. I learned a lot of the basic signs but then haven’t used them since then so have forgotten almost all of them. But the book had good pictures and was easy to understand…30 years ago, at least. It might help at least with you and Stuwart. 🙂

    • We’ve learned some very basic signs, I’d really like to take a class but haven’t found one for deaf people. They are all for people who can hear. We started one once and I just couldn’t understand.
      It was very nice of you to learn some sign language for the girl you were working with.
      We have gotten slack about trying to learn more sign language. It really isn’t that easy.
      xo

  2. Yes, I do know a lot more about your CIs, hearing/not hearing with/without them etc. No wonder you have trouble with my voice — I talk fast and do sound like a cartoon character, honest.
    Great post; like your face book page.

    • I hope I answered all of your questions. 🙂
      I hope I let people know that everyone is different when it comes to CIs.
      I can’t hear as well as a lot of other people i know of who have been implanted.
      That doesn’t mean anything is wrong. We are just different.
      and I’m very grateful that I can hear at all.
      Don’t feel bad about me not being able to hear you.
      I really don’t understand anyone on the phone.
      I need to see a person’s lips to really understand.
      xo

  3. Fascinating post! Can they do anything about the screws? It’s a bummer that you can’t lie down comfortably when you have a vertigo attack.

    btw- have you consulted with a neuro-opthamologist about the vertigo? I just learned of a book I will be profiling in my next blog post. You won’t be able to listen to the video I linked (or others on other pages), but my little synopsis may encourage you to get the book – and there is a pdf excerpt linked in the related content at the very bottom.

    I so wish that someone could find something that would give you some RELIEF!
    xx,
    mgh

    • dear Madelyn, always thinking of me.
      Yes, I’ve seen a neuro-ophthalmologist. I have high Cerebral Spinal Fluid pressure and that can cause a lot of trouble in that area. But it is under control, and the extremely through exam showed nothing wrong.
      I do have my eye pressure and the back of my eyes looked at every year, just to be sure.
      Thank you so much.

      • I should have known you’ve tried it, but I was so hoping that perhaps there was something you hadn’t tried that might have lent a clue that might help make something a little bit better.

        I know everybody’s different, but I ran across a book written by an academic whose life was essentially saved by a new neuro-ophthalmic technique. Immediately, of course, I thought about you. (I’m wondering if something like midline shift is part of my attentional struggles, too – any improvement is GOOD improvement, right?)

        You are in my prayers – maybe that’s the answer!!

        xx,
        mgh

  4. Thank you for sharing your experience. I hear so many different things about CIs, that I don’t know what to think. I also have Meniere’s Disease. I really feel for you on that vertigo and the fluctuating hearing. It’s really frustrating, isn’t it?

    • yes nenamatahari, it is frustrating, but I know it is a part of my life, so I just kind of go with the flow as best I can. 🙂
      You hear so many different stories about CI’s because people’s experiences can be vastly different.
      Some can hear almost normal, some only hear clicks and whistles at first.
      Some people progress in hearing quickly, others take time.
      Some people never progress as far as others.
      People are different. Experiences are different.
      However, most people can hear some things no matter what. I might not hear as well as some people, but I can hear, and I’m very grateful for that.
      I’d get them again in a minute!

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