My Cochlear Implant Sounds Like…

I am still not very far along in my sound recognition with the cochlear implant. I have been relying on it for a little over a week as my only source of hearing. Everyday, I notice a little improvement.

For now, the sounds are still like noise, but each noise is starting to have its owner. I am starting to recognize the source of each noise, which is very helpful.

This is what it sounds like right now

• My own voice is starting to appear to me, but it sounds like 4 or 5 voices talking together. To me, I am my own choir.
• The environment sounds like an orchestra before a performance, with each instrument being tuned and playing separately from the others, all of this happening at the same time, in a school cafeteria at lunch time.
• Voices sound like they are being accompanied by quartets of tubas and cellos.
• Every once in a while, I hear a loud sound that is just like the sound of shooting one of the wings off of a blue bird on level three of Phoenix for the Atari 2600.
• Everything is jumbled, inside out, upside down, multiplied, echoed, and then put through a badly tuned radio with a short on the volume knob, causing it to get louder and softer without warning.

My Tinnitus Sounds Like…

My recently deafened ear rings constantly, but it is not always the same sound. Here are some things that it sounds like.

• The computers in a 1970s science fiction movie.
• Jungle sounds, lots of monkeys and birds.
• A heavy steady rain.
• Ross playing the keyboard on Friends.
• A dial-up modem.
• A jet getting ready for takeoff.
• A coffee-maker brewing coffee.
• Elevator music rhythms played on wooden drums.
• Someone playing only the 8th octave of the piano, or the only the 1st.

Next post: what my cochlear implant sounds like.

Anxious for Meaningful Sound

I’ve been deaf again for 6 days. My cochlear implant has provided me with lots of noise to listen to and a few indicators as to what is going on around me, like footsteps and impact sounds.

My hearing test showed that I could barely register a couple of frequencies at 120db. That was it. My doctor told me to wear my hearing aid for a few hours each day to stimulate my ear a little more. I was wearing it when I got home yesterday, and my son got so excited when he saw me.

“You’re wearing your hearing aid!” I read his lips. “That means you can hear me again!”

“No, not yet.” I replied “Just a little tiny bit with my cochlear implant.”

He gave me a hug and a kiss on the cheek. “I love you, daddy.”

What a special boy I have.

What I Can Hear, Now

I have been wearing a cochlear implant on my left ear for a little over two months. Up to this point I’d been bi-modal. That is two modes of hearing, a CI on one side and a hearing aid on the other. My hearing aid provided my primary hearing and I had been learning to hear with the implant as an auxiliary.

I knew that one day the CI would become my primary hearing. I did not think it would be so fast. Maybe this is just temporary. What ever the case, this changes my rehab strategy.

During the first month (and mapping), I couldn’t hear anything with it, except rain on the roof and a barking dog. Neither sounded anything close to normal and both were as quiet as a whisper. Everything was set low, due to my sensitivity to the stimulation.

During the second month (and mapping),  I could hear lots of noise, but nothing “real.” The blanging clanging whistling sounds enveloped everything. I could, on occasion and using a direct connection between the processor and cell phone, recognize a song and follow it. Words still escaped me.

Now, I have lost my hearing in my aided ear. I am dependent on my CI for all sound input. It is still mostly unclear garble with some recognizable sounds coming out.

Here is what I can identify. I will add an asterisk* to things that sound almost “right.”

• Knocking on wood or glass*
• Clapping hands*
• Pretty much any impact sound
• My son’s toy train
• Running water
• The toilet flushing
• That someone is talking
• Bird’s chirping (Though I am having lots of jungle-sound tinnitus, so I never know if it is real or imagined. Pretty sure the monkeys aren’t.)
• I can identify some songs
• I can follow some speech for short periods of time when the corresponding text is in front of me.

I get about 30% of my wife’s words right when I get her say a word in a category three times. For example, if I give her the category fruit, she might say, “Banana, banana, banana” I understand the word about 3 times in every ten exercises.

From Hard of Hearing to Deaf

When I had my cochlear implant surgery last year, it wasn’t a pressing need, but it was needed. My hearing, was good enough that I didn’t need the implant for communication, yet. But the progressive and repeating nature of my hearing loss, meant that one day I would need to rely on a cochlear implant.

The hearing loss has up until now, come in ten year intervals. I expected to be in my early forties when it happened again. The cochlear implant, by then would be functioning well and my quality of life would not diminish at the onset of my deafness.

As it happens I’ve lost my hearing again, and I am only in my third month of learning to hear with a cochlear implant. The CI now provides the only sounds I hear, other than tinnitus. I had been working my hearing rehab so that the cochlear implant would assist my hearing. Now it is my hearing.

I will have several observations here soon. But here are a few things going through my mind.

1. My hearing in my non-implanted ear will likely come back. It has before.
2. That hearing won’t be as strong as it was before.
3. Because of my reliance on my CI for sound information, things will probably happen a little faster.
4. Even though I can not understand speech and most things sound like noisy whistles and clanging cymbals, it is better than no sound input.
5. I will have to quit giving English lessons, at least for a while.
6. I will not have to quit training people to do participatory Bible studies or Bible storying, nor will I need to quit any other ministries of being a missionary.
7. I now have a good excuse to not talk on the phone.
8. CI Program 4 is definitely the best one I have. Forget 1 through 3.
9. I am having melodic tinnitus. I am hearing short random melodies, like the sound a cell phone makes to warn that the battery is low. Another one sounds like coffee brewing. (Maybe it’s my cochlea draining?)
10. I am glad to have this blog as a place to talk about all this.
11. I expect this current hardship to be temporary.

May good will and peace from God the Father and the Lord Jesus Christ be yours! – Steve

Learning to go Deaf

I subtitled this blog “Stephen’s experience learning to hear,” but I am learning so much more.

Today I went completely deaf again.

It’s my birthday today, my 36th.

Weird combination.

I will write up a good long post about it, but not now. I just wanted to post the news.

My Birthday

I turned 36 today. This year my birthday comes with new and significant challenges pushing my family and I into a deeper dependency upon God.

Missed Appointment

I arrived at my appointment with the audiologist today about 15 minutes early. As soon as I walked in she looked at me and said, “Your appointment was yesterday.”

I looked in my agenda, and I had Thursday, January 19th, 4:45 pm marked down. She looked in hers and had marked down Tuesday, January 17th, 4:45 pm. Oops.

How did that happen? Well, this was the first time that I pulled out my agenda and wrote down the appointment right there, instead of letting her write it down on an appointment card.

We miscommunicated.

Oh well. We rescheduled for Tuesday, January 24th at 5:45 pm, and I got it on an appointment card. At least I have another week to decide on which program is best for me right now.

My Story

Newcomers to this blog may not know me and know about what kind of hearing I have now and have had before. This post is my story.

My Hearing Right Now

My hearing right now is good enough that, other than asking people to repeat more often than others, I function just like anyone else. I rely mostly on my hearing aid and I am learning to hear with the cochlear implant.

My Sudden Deafness Story

I wrote a lot about my last experience going deaf in another blog. I will post excerpts and links here.

Timeout

This morning I lost my hearing. I am completely deaf now. This happened to me 10 years ago. I was pastoring a small church in Texas and studying at East Texas Baptist University. If it follows the pattern, I will be deaf for a few months and my hearing will return. If it doesn't well, only God knows…

Quiet Time

Today I had a CT scan done. I'll get the results in two days. Our best guess is that the cause of my hearing loss is Enlarged Vestibular Aqueduct Syndrome. I have experienced hearing loss in the past, twice, 10 years ago and 20 years ago. Both times, my hearing returned after a long delay. Hopefully this will happen again…

Do you know how to whistle?

I know it's been a while since I've written. Honestly, there hasn't been news to write about. I spent 2 weeks in bed after suffering from sudden onset hearing loss. I spent the next two weeks doing little more than that… Today I was playing with Nilson and whistling to him. I heard myself. Not much, only one tone, but I heard it. It made me smile and laugh. Actually, it was only 10 minutes ago that this happened, so you can see that I am excited…

Hearing Test

Today I am going to have my 3rd hearing test since I went deaf. The first test showed zero response to any frequency. The second test two weeks later showed zero response to all frequencies, except one, which I could hear vaguely at 90 db. I expect today I will be hearing a number of frequencies…

A Quiet Victory

My hearing test results showed that I have recovered some hearing on all frequencies (sounds I heard were over 100 dB). I still don't have useable hearing, but this test shows that I am on the road to recovery. God's still working on me…

…

I am sure I have posted other things in other places, but this gives a little record for those who might be interested. Maybe it will be an encouragement to you. God bless.

Steve

Program Evaluations

In my last post I mentioned that I am trying out four programs this week to see which one we will build from going forward. Today I will post a little about programs 1 and 4.

Program 1 is a big step back with respect to volume. Nothing is loud enough. However, every sounds good and everything I hear is identifiable. But it is much too soft.

• Advantage: Amazing clarity
• Disadvantage: So soft, it is unhelpful.

Program 4 is loud, just like my previous settings. Still too loud but the balance is better. It is not terribly annoying like the previous settings. The volume seems to be higher than what I hear with my aided ear. Unfortunately, it is mostly whistle sounds.

• Advantage: Volume. I can hear things far away and things that are too quiet to normally hear.
• Disadvantage: It is mostly noise divorced from meaning. With good volume the clarity goes away.

Programs 2 and 3 are adjustments somewhere in the middle. I will try these two out for a couple of days and post a report here.

Four Programs

In my visit to the audiologist yesterday, I had some difficulty finding a good mapping. I related the fact that the last mapping was really too loud for comfort and so we took a step back. We adjusted the levels, and every time we created a map, it had an advantage and a major disadvantage.

So, what we decided to do was to insert four different programs. I will use each one for a day or so, and next week, we will decide which of the four is the best choice. From there we will build a progressive mapping plan.

Third Mapping Today

Today, I will have my third mapping. I am excited about this. At the very least, we will adjust my processor to comfortable levels. As I mentioned before, I was so excited to be able to hear something on my second mapping, that I allowed the levels to be set a little too high.

I will try to update later today with some results.

Pressure

The post title does not refer to pressure in my ears. I have felt that from time to time. For that the doctor prescribes Betaserc. No, the pressure from the title is two-fold.

I really want my hearing to improve quickly. The process is steady, but always feels slow. This month, I’ve been hearing a lot of noise. Too much, actually. I think when I set my maximum loudness comfort level, I went too far. I went from no hearing to a lot of hearing and it felt so good, that I may not have accurately set the levels. Everything is too loud and too noisy.

I’ve had to turn the CI off from time to time to give my hearing and my head a rest. I get frustrated and feel like I am not contributing enough to my hearing rehab and turn it on again. Pressure. Pressure to hear, to succeed.

Well, today I had a setback. I put on an audio book and hooked up my CI to listen to it and follow along with the text. I couldn’t. I even couldn’t follow a sentence to the end. What was wrong? Everything was just noisy. No clarity.

Pressure. That was the problem. We had some meat in the pressure cooker and it was steaming and making all kinds of noise. I didn’t recognize the sound with the implant. It’s one of those higher pitched noises that drowns everything else out.

I’ll try again at bedtime… no pressure.