Overview: I come from a hearing-challenged family. My father did pretty well, but my mom had severe losses (probably due to living in a house with 7 rambunctious children). She wore aids from her 40s on. Of my 6 siblings, only one doesn’t wear aids now. Two have had a single CI, one has a pair of CIs. I will represent the 4th of 7 to have an implant. I started wearing hearing aids in 2001, upgrading every 5 years to newer, more powerful models. In mid-2023 I began  seriously pursuing getting a cochlear implant (CI) for my left ear. I wrote about my HA journey in 2011.

How did I get here?

I taught elementary school from 1990-2015. By 1994 I was complaining to OSHA that I couldn’t hear little girls’ voices in my 4th grade classroom. They said I couldn’t get help from them because if my ears were good enough to call them on the phone, they weren’t bad enough!

By 2001, I got my first set of hearing aids (HA). They helped, to a point. Keep in mind that HA make everything equally louder and are not discerning. Every five years I had to get new aids , out of pocket, as my ears deteriorated. This coincided with regular performance improvements. I did well for a while. Over time my left ear became significantly worse than my right. Higher pitches were nearly impossible for me to hear. Fortunately for my sanity, I transferred from teaching in the classroom to PE in the gym where I could always see if the kids were understanding what to do. I still couldn’t hear much in the gym, but I was able to do my job. But living in intergenerational cohousing has meant struggling to hear at common meals and meetings.

As we moved into our cohousing community, I immediately had trouble in group settings, such as meetings and meal times. My speech understanding continued to deteriorate.

In 2022 my audiologist told me I might be a candidate for a CI. Unfortunately, I had just joined a 5-year drug trial for a possible Alzheimer’s treatment. That study required quarterly MRIs and since CIs involve implanting a magnet in your skull, they were temporarily out of the question. As it turns out the new models of CIs are MRI compatible. But no matter, a year later I had to drop out of the study due to a known potential side effect of the drug. Bad news. The up side was I could start looking at the possibility of getting a CI again.

Aiming for a Cochlear Implant

My audiologist at the University of Washington Speech Clinic said I easily qualified. A test at Kaiser (our Medicare insurer) resulted in the opposite result. They told me I decidedly did NOT qualify! We spent 5 months trying to get a second opinion. Eventually we got Kaiser to do a 2.5 hour CI workup and they finally agreed I’d be a good candidate. It took until January 2024 to get the surgical approval, set for March 14. It took a lot of pushing to get the date that fast, but I was glad I had Sheila working the angles for me. She also spent a couple of months waiting for that appointment exploring insurance options just in case we couldn’t get KP to approve the surgery. Since we’ve been with them for decades AND they’re a few blocks from our home, we didn’t really want to leave them. Fortunately we didn’t have to.

Research & choices

There are so many things to figure out when considering a CI. First of all, there are only 3 brands available in the US: Cochlear America (CA, an Australian company), Advanced Bionics (AB), and MED-EL. But what’s the difference? How to choose? Sheila, being the consummate researcher, immediately got onto the web and found this comparison chart that is kept up to date. We also joined a Facebook support group focused on CIs. And we visited with people from the local Hearing Loss group. We initially settled on the CA as as they have 50% of the market share and all my siblings have one of theirs. MED-EL didn’t seem to be in the running. AB sounded great except for the recent recalls they had.

This is the AB review that shifted our opinion. The AB is the only one made in America and most importantly the only one which allows the HA to coordinate with the CI. Looking more closely, we spent some time with an AB rep at our home. It seems the AB may very well allow me to hear with directionality. One app would control both the CI and the HA. Those would be big improvements over the other options. Plus, we can get fun colors. Soon, we had made our choices and prepared for surgery. Of course, the dates for the surgery had to be arranged around our planned cycling trip to Tucson. We wanted to get in our 3 weeks riding in the sun in case the surgery left me unable to ride the tandem, a rare potential side effect is dizziness. So the surgery was set for March 14. They have to wait until the incisions heal before activating the CI. At the activation appointment on March 29 is when they turn on the processor. Then the learning begins.

What happens in surgery?

If you are squeamish, this is the simple version. They insert an electrode into my inner ear (cochlea) and create a place for an internal sensor behind my ear. Skip now to SURGERY.

More details for the strong of stomach:
They make an incision behind my ear, then flap the ear out of the way. The doc drills away some of the mastoid process so they can see where all the important facial nerves are as well as a small access hole to slide electrodes into the cochlea. That thin wire spirals through the cochlea. The rest of the internal processor is embedded in the skull just above the ear. Then everything is zipped up to heal.

Surgery

We were scheduled to arrive at 6 AM. The alarm was set for 5. I woke up at 3 AM and Sheila joined me at 4. We even had time to meditate. Of course I couldn’t eat. Got checked in pretty quick and learned the schedule for the day. They said I should start @ 7, with the surgery getting done around 11:30, then 1-2 hours in recovery. Sheila was sent home. Miracles of modern medicine: 4 hours later and I’m out of surgery and feeling peppy, for the moment. All the care givers were great. I felt pretty darn good.

Didn’t sleep well at all the first night but other than that it was a model experience. No pain to speak of. Took some Tylenol a couple of times the first day but nothing more needed. And lucky me, none of the possible symptoms we read so much about on the CI forums. Most importantly, my balance was good from the time I was wheeled out of Recovery. Cycling will continue to be part of our lives! Big Yay!

I got a lot of love from family, close friends and far-away friends, even those I’d lost touch with. It’s hard to convey just how much it helped. It has been a great lesson in how closely connected we all are, if we allow ourselves to see it. It actually gave me hope during a very dark time for our society. It’s also prepared me to be strong as I start on my journey to a new way of hearing.

Next up – hearing lessons

Learning to hear? Yes. My left ear is now completely shut down. The implant is akin to me having a prosthetic leg. My brain would know how it used to make my leg move, but that won’t work with the bionic leg. It has to learn new paths to make the prosthesis work. In my case, the ear is sending an electronic signal instead of those signals the cilia would send. The brain center has to learn the “new” codes for what the left ear is sending.

I’ll be listening to books while reading them, songs with captioning, videos with captioning like Ted Talks, and all kinds of things to re-train my brain. Eventually, it will learn to recognize the signal from my implant. This process can take anywhere from a few weeks to a year or more.

But that won’t start until after…

Activation Day

After being checked over by the surgeon on the day before, Activation Day is when the audiologist actually sets up the computer processor and turns on the implant. They setup the initial setting of volume, pitch, etc. depending on the hearing test chart. Usually those levels start a little soft to give the brain a chance to adjust. The input will be changed regularly as I go through the re-training.

So two weeks after surgery, on Friday March 29, I spent 2 hours with the Audi getting set up. Quite the process. It will be a long process to learn what sounds are. For example, I was hearing a screechy sound which was her swivel chair. I’m going to have a lot of sounds which are unrecognizable to me, but should eventually pair up with what my good ear hears.

And it was a very successful day. I watched a 40 minute TV show and was able to recognize pieces of their voices. I listened to rock music and was able to actually hear a lot of “Raindrops Keep Falling on my Head”! “Day doo run run run” didn’t do as well. Its female voices were all very flat, atonal male vocals. George Harrison was unrecognizable. But, by bits and pieces, it’s coming together.

I was able to hear the fountain at Kaiser as we walked by. I could hear the Harley making a left turn behind me. I got phone calls from 2 of my sibs who wear CIs. I could actually hear them! Usually our calls are quickly truncated because neither of us can hear the other. It was good to get positive remarks from those who know.

Still lots of strange things. Car tires sound like a bubbling brook rolling by. My key ring is much more melodic than anything else I heard today. When I sniff, is sounds like the kind of bike bell that goes “brnnng brinnnggg”. That’s slowly changing. As of this morning it helped me recognize that Sheila’s cold is coming back because SHE was making the “brnnng brinnnggg” noise. I wonder what it will turn into?

My sibs think I’m doing great. I’m more excited by the minute. I’m so glad to be able to share this with you. I love feeling all your support. A very humble, thank you to you all.

Post-op Brain Training

Details Coming soon

I started computer lessons right away. So far they are a little hokey and I’m not sure it’s teaching me anything useful. But there’s still a lot to explore on that level. Most of what I’m doing is just using my cochlear and not my right side hearing aid. That way my brain has to learn to re-interpret the input the CI is giving it. 

Seven weeks from activation
Seven weeks have passed since my CI was activated so I thought I’d give an update. Things are going really very well. I’ve been hearing more and more sounds that I’ve missed for years. Did you know that your shoelaces make a noise as you take steps? Voices are sounding more and more normal when I’m wearing both the CI and the hearing aid on the opposite side. Music still has a ways to go, but I’m sure it’ll get there. The doctor is very pleased with my progress. The only glitch has to do with my “normal” ear. It has a tendency to get irritated easily which causes a shooting pain down my jaw. We’re experimenting with a different type of mold material for the aid. It’ll take a couple weeks to get it made. We’ll see.
 
I’m happy with my new toys and that I’ve been able to be part of large group meetings successfully. From this point on I imagine it’ll be a slow, steady process.
Alzheimer's Study