A while after my last map, I started twitching again. I thought it was my imagination, but when I had to tell the kids to stop a) typing on the keyboard b) playing music or c) being themselves, I knew something was wrong. For a while, I was in denial. We had spent so much time at my last appointment making sure I wouldn’t twitch. Why was I doing it again?

I kept putting off emailing Sharon. Finally, it was unavoidable – my eye was most definitely twitching. She said sometimes there are some slight changes in my electrical current needs which require reprogramming. Ok, I thought. Perhaps we wouldn’t have to redo my entire program. Maybe…

I went in this morning. An hour and a half later, I had a new program, but it wasn’t as bad as I thought. Who knows why the twitching occurred. Sharon says I’m not alone. Let’s face it: I have a friggin’ chip in my head and am dealing with electrical currents. We deal with issues with our computers all the time. It’s not surprising that it can happen with my CI too — especially when electrodes are running right next to my facial nerves. Sometimes they can just get out of whack.

It took a while but Sharon finally hit upon the key: She lowered my M levels (most comfortable loudness) by four levels and slowed the rate of speed (pulse levels) and that eliminated the twitching. Interestingly enough, shutting down one of the electrodes (what looked like the key one), made it worse, because all it did was boost the energy to the other electrodes. Increasing the mid-range electrodes didn’t do anything either, because it didn’t didn’t make the volume sound any louder to me.

Needless to say, after the last appointment, I didn’t expect to deal with any twitching for a while. I like to hear as much as possible, especially when it comes to volume, loudness and sensitivity. To have to keep dialing it down is frustrating, to say the least.

And I like to wink on my own, thankyouverymuch!

I had my first map in a year. The last time I went was for my facial twitching. I was called back by Sharleen, who was a student I did rehab with back at CAT. Now she’s doing her rotation at the Eye & Ear Institute.

First, we attempted to go into the individual electrodes to see if we could bump them up, since I complained of general softness. But this proved to be a frustrating method. You wouldn’t like it either if you had to determine whether an individual frequency was comfortablly soft, comfortable, comfortable but loud, etc., all the while it’s pulsating in your head. If I could hear all the sounds at once, it’d be an entirely different thing, but a single frequency at a time filling my head, BAM! BAM! BAM! is not fun AT ALL! On top of that, I had to go from one frequency to the next, making sure they’re all balanced in volume. Sharon quickly recognized my frustration and noticed that we were actually pulling everything down from my previous program, so she adapted and suggested we try a different tactic.

This meant taking my original program and adjusting the quality overall, rather than individually. She pulled some of the electrodes up and played with them that way and increased the microphone sensitivity. She increased some of the high frequency bands and then ended up bringing up some of the bass as well. Unfortunately, we couldn’t increase a couple of the high frequency bands because they’re the ones that cause my facial twitches. A large portion of the session was actually spent making sure that I wouldn’t have any facial twitches. This was done by having Sharon and Sharleen banging scissors against the table and a vase to see if my eye twitched. I felt like a puppet!

Once we created a new program, Sharon then globally increased it and increased its sensivity by a few levels. So that’s my loudest program. Sharon repeated her mantra that I can’t really go up any louder with my CI.

Then it was time to go into the sound booth for some testing. I tested the same as last time audiogram and voice awareness. On the HINT recorded sentences, however, I improved. Last time, I scored 21%. This time, I scored 32%. Go me! During the test, I was pretty frustrated, because the sentences couldn’t be repeated, the recorded voice was fast and some of the sentences were really short. For those of you who are unfamiliar with these types of tests, this is extremely hard for a deaf person. These sentences have zero context. It’s like grasping at straws. So for me to get 32% is really amazing. I could tell a couple of times that I nailed the sentence completely. Some sentences, I was able to get one or two words, but even that’s an achievement. Sharon then did the test again, using her voice, speaking at a slower pace and repeating the sentence again. I scoared about the same as last year – actually slightly better, since I was given four more sentences.

I know I haven’t posted to this blog in a year, but that’s only because I haven’t had anything much to say until now. I’m embarrassed to say that I haven’t been doing any rehab. I keep saying I’ll do it but life keeps getting in the way. I suppose I can say I’m getting my real-life practice in. I haven’t been able to hear the alarm my car makes when I forget to turn my headlights off (not that I do it that often or anything!), but I told Sharon that today and hopefully the new map will help with that (perhaps it was on one of the frequencies she had to clip last year). I still have my lightbulb moments. Someone sneezed in another room and I recognized it for what it was. Aaron said something the other day behind me, and I understood him completely. I have moments like those fairly regularly, so I need to make them happen more often by forcing myself to practice – especially now that I have my new i800 CapTel phone – a perfect rehab tool.

Sharon again reminded me of how far I’ve come since the beginning, and how little the hearing aid helped me compared to the CI. This past year I became a volunteer for Advanced Bionics. One of the things I’m doing for them is acting as a Mentor, where I help counsel other interested CI candidates. I’m one of the few who only has one CI, which makes me unique. Bilateral is all the rage these days, you know. Sharon asked if I wanted another, and I emphatically said no. If I were to ever lose hearing in my other ear some day, maybe I’d consider it. But right now, I’m fine with using my HA for balance. So again, I have to find the right balance between using my CI, practicing how to listen, and living my busy life!

Was I developing a tic? I started noticing that my left eye was twitching a little too often. I began paying a little more attention and finally realized that it happened when I heard certain frequencies. One night at dinner, Samara banged her spoon on her plate — on purpose, mind you. *Twitch! Twitch!* My eye exploded. I decided to test my theory. I took my implant off and told her to bang her spoon again. My eye was oblivious. I put my implant back on and prepared myself for the onslaught. Sure enough, my eye went crazy. My theory was officially confirmed.

It wasn’t just loud noises like the banging of a spoon that made my eye twitch, either. Even just someone talking to me could do it. There was no way to predict. It was very frustrating, not to mention unnerving. I posted on Facebook: “Lisa just realized that her eye twitches when she hears a certain frequency. Time to get a new map!” A couple friends got smart and asked, “What frequency, exactly?” and “Eeeee! Did I hit it?”

I’m not sure when it started, but I suspect soon after my new map. I just didn’t make the connection for a while. Sharon squeezed me in during lunchtime today. Figuring out how to get rid of the twitching took trial and error, since the program doesn’t allow her to test groups of bands with the High Fidelity 120 program. Doing them individually didn’t work either. She eventually figured out that it was mostly bands 11 and 12 – basically I was getting too much electrical stimulation between the bands. The auditory nerve is close to the facial nerve, which explains the twitching. Apparently I’m not the only cochlear implant user experiencing this.

Sharon brought the problematic bands down and kept making certain noises (clapping, banging, saying “bup bup bup”) to see if my eye twitched until we got rid of it. Hopefully we accomplished that! My new program (P1) now has new significantly decreased bands of 9-12, while others were increased. My new P2 has slightly increased bands of 7, 8, 12, 14, and 15, which will give me the perception of increased volume. My new P3 has a global increase of two clicks from P2. Sharon feels this new program is more balanced than the map I got last time, which she said was a little out of whack but I seemed to like.

I’m fine with being a bionic woman. I just don’t want other people controlling my muscles!!