Mapping (program adjustment) of a cochlear implant is a tricky thing. There’s no one formula that works for every person. It’s not like programming a computer where there are 20 ways to do something and it either works efficiently, works okay, or just doesn’t work. CI mapping is more of an art than a science, at least from a patient’s perspective. This week, my artist/audiologist helped me find my own art again.
My CI, the Advanced Bionics HiRes90K, has 16 electrodes that correspond to different frequencies, from the lowest at electrode one and the highest at electrode sixteen. When you first get your processor programmed, the very first thing that happens is you go through each electrode individually and make sure you can hear them at all. Then each electrode set (groupings of 4) is evaluated to set your personal threshold of volume for those frequencies – ie, how loud can it get before it starts to feel painful? Then, in my case anyway, my audiologist gave me the first program with no other adjustments – just all turned on at slightly lower than my threshold. She was proactive and then gave me two more programs – one at my threshold and one slightly higher. This way, once my brain adjusted to hearing at all, I could switch up to the next level and adjust to that without having to come see her. For a week, this is all my programs were. Speech started coming in a little bit around day 3 and then got progressively better very quickly once my brain figured out it was hearing words. There was no real understanding of pitch and all sorts of crazy robotic/Mickey Mouse/tin can sounds happening. That first activation is like computer programming – it basically either works or it doesn’t. You hope it does, because if it doesn’t you just had a really expensive hole drilled in your head for no benefit.
Mapping is where it becomes art. My first mapping session was where everything started to click. We went through each electrode set again and adjusted volume. Then my audiologist and I talked for awhile about what things I was understanding and what was still muddled, how I was feeling about it all, were there any sounds that were particularly troublesome, etc. Then she made some adjustments. After every adjustment, she would talk – days of the week, months of the year, the list of hearing test words (which by the time you get a CI, you probably have memorized anyway). I’d respond and basically tell her if it was better or worse, like in an eye exam. In this case though, like in computer programming, one change in one place might make something else work differently, so she had to look at the big picture. This time she gave me a couple of different programs for use in different settings. I went home, listened for a week, then I came back and repeated the process. We did this every week for 3 weeks, then every month for 6 months. Sometimes we did hearing/speech tests to accurately test where I really was.
Music started sounding okay and my CI sound and hearing aid sound started to come together a blend a little bit around month 3. My sense of pitch (which once upon a time when I was a fully hearing person was pretty close to perfect), was horribly off. I could sing if I trusted myself, but I only did so in public once because I was not comfortable with it yet. Around month 6, while my scores were off the charts they were so good, something still wasn’t right. There was this tinny sounding after-echo to everything – my brain had not yet adjusted to hearing the super high frequencies. The solution was to turn off the highest electrode – #16. This is very common for people who have lived a long time with a high frequency hearing loss. Some people turn it off and live that way for a very long time in the future, they don’t miss it at all.
Time went on and my mapping sessions went from being every month to every 3 months. At 1 year, we went to every 6 months. I don’t recall exactly when we turned #16 off, but I feel like it was around 6 months after activation. I didn’t miss it, I’d mostly even forgotten we’d turned it off. At my 1-year appointment, I saw a new audiologist and she mentioned it. We didn’t turn it on, but I remembered that she’d said it was off.
This Monday was my 1.5 year / 18 month mapping. Everything was going well and sounding really good. The only real adjustment I wanted was a little bit more volume overall on my everyday program. But I felt like I was still lacking a correct sense of pitch and I wanted to see what we could do to fix that. So we turned on electrode #16. And magic happened.
Suddenly everything had a depth to it that I didn’t realize had been missing. There was a tiny little bit of the Mickey Mouse-ness, especially in female voices, but if I’ve learned anything in this last year and a half it’s that you have to give the brain time to adjust to anything that sounds new and different. I learned that with each and every change in my hearing starting on that first day 17 years ago, but it never really truly stuck with me until I started the CI process. I trusted that the Mickey Mouse would go away and after a few days everything would sound as close to perfect as I can imagine.
I was right. So much so that later that evening, I was comfortable enough with it to try singing. It’s not like I haven’t been singing. I’ve done it alone though, or on a Marco Polo video to a very select subset of my imaginary internet friends. I even did karaoke when we went on our cruise last summer. But it never felt like it was right. I was still questioning my pitch accuracy (I have an app on my phone that shows me visually how badly off I am, so I had good reason to be questioning). Monday night, it clicked and finally started feeling right again – with electrode #16, I had an absolute full frequency range and I was going to make the best of it. So I did. And made a video of it and shared it on Facebook. And it’s been watched something like 450 times and every comment on it is amazing. Is it perfect? No. But it’s *right*. Thanks to my mapping artist Amanda, my own art is starting to come back.
P.S. My new band name is “Electrode #16”, so nobody steal that.