It’s Been Six Months Already
I had my six-month mapping on Feb. 6th. Six months! (Although, technically, it won’t be six months until Feb. 20th.) When I had my three-month mapping, the audiologist didn’t change any settings; she just gave me a hearing test. I could tell I was ready for some changes though…more volume and such.
As always, I was not looking forward to the hearing test portion of the mapping. It’s not like I majorly dread it or anything, it just takes SO LONG and I never feel like I’m doing it right, and I get so tense and forget to breathe and ugh, it’s just kind of a drag. Part of it is that it feels like it goes on forever. For this six-month visit I ended up taking…uh…I think it was 8 tests. I can’t remember if it was 8 or 10. But anyway, I do the tones/beep test with both CIs on. Then I take the left one off and do it with just the right side. Then I switch and test with just the left side. Then I do the same for the sentence test: both CIs, left CI, right CI. Then they add noise, and I did the loudest noise test with both CIs on (luckily not doing each side individually because I would’ve just sat there, saying nothing, the whole time). Then they dropped the noise down and I did that test with both CIs but I can’t remember now if I did it also with just the left and just the right side. Hmmm. I don’t think I did, though.
When they called to confirm the appointment, they told Dave I wouldn’t be seeing my usual audiologist. For whatever reason she wasn’t available that day; I could’ve seen her the day before, in the afternoon, but I like to be home when Paige gets home from school so I just kept my original 10 am appointment. We didn’t recognize this audiologist’s name and she wasn’t on their website, so I really had no idea who I’d be seeing.
I always kind of enjoy the waiting room at this doctor’s office because it’s the only place I’m likely to run into other people who are deaf or hearing impaired and/or who have a CI, hearing aid, or other device like the Baha implant. I just think it’s kind of cool, since I rarely even see people with a hearing aid out and about in the “real world”, much less a cochlear implant.
When we walked in for this appointment, there was nobody else in the waiting room. Then this older lady walked in, smiled at me and said, “I’m following you!” (She had been in the public bathroom at the same time I was.) It was great to actually understand this little comment that she tossed off so casually. Then a middle aged guy came in, and he’d obviously had surgery not that long ago. He was with the older lady (his mom, maybe?) and I heard them say they were there to see my doctor. A few minutes later he came into the waiting room to bring the patient back to the examining room, saw me and got a big smile on his face. I hadn’t seen him since my follow-up visit after my surgery. He asked how things were going and I told him they were fantastic, and I love my CIs. It was really nice to see him and let him know things were going well.
One thing I’m still getting used to is the inadvertent eavesdropping that I sometimes do now that I can hear better. I was never able to do that because I always had to read lips, and I wasn’t about to stare at people! 😮 Now though, I sometimes hear things without even meaning to. When this guy was done with his appointment, he and the woman were at the window scheduling another appointment. I heard him say he had his surgery one week before (it looked like it was for the Baha implant) and they set up another appointment for Feb. 20th. This was with their backs facing me so I couldn’t lip read even if I wanted to. It was really weird, realizing I was catching all of this conversation without watching their faces.
It turns out the audiologist I saw had started about six months earlier, right about the time I was initially activated. She had another girl with her, who turned out to be a trainee or student (I’m not exactly sure how it works there but there is often another person in training when I go in for mappings). Usually the trainees are kind of meek and quiet but this girl was so confident and pretty much took charge of the whole mapping, that I originally thought she might be a rep for Advanced Bionics! I think she must have just been very far along in her training and they were letting her take charge. Usually it’s the audiologist who does the actual mapping while the trainee sits next to her, watching. This was the opposite – the trainee did the mapping and hearing test, while the audiologist was there watching and answering any questions she might have.
I really liked both of them and they worked well together, so I felt pretty confident that it would be a good session even though it wasn’t my usual audiologist. They both seemed to really know the AB software too; there was no hesitancy at all. That’s the only thing I used to wonder about my other audi…I got the feeling she worked more with Cochlear Corp. software than Advanced Bionics. Even though they are both cochlear implant companies, they have different mapping strategies and software and I think it helps if you have an audiologist who really knows the software and how to use it.
The visit started with me telling them how things have been going the past three months – things I’ve been hearing that I never heard before, and the fact that I leave my CIs on the regular volume when I put them on in the morning. I used to have to turn the volume way down when I first put them on, and then I’d gradually increase the volume up to the zero mark as the day went on. I also figured out that if I was exposed to loud, constant sound then I would get used to volume faster and be able to tolerate it better. So I started turning the fan on in the bathroom, which to me is a really loud noise. I would leave it on while I washed my face, put on my makeup and fixed my hair. By the time I was done, I would barely notice the loud fan which originally had been so loud it would make me wince. Then all the regular noises of daily life sounded fine instead of painfully loud. It’s weird but it really does work for me…it’s like it wakes up my brain, after a long night of total silence.
Then I showed them my T-Mic and asked if it was the right size. (This is the ear piece that attaches to the processor, and it has a microphone at the end of it.) It kind of felt like it was so long that it rested against the side of my ear instead of hanging down into the middle of my ear like it should. They looked and agreed that it did look a little big for my ear. I also tend to get a lot of static on that side, which goes away when I tap the T-Mic. I wasn’t sure if it was a problem with the T-Mic or maybe the headpiece. So I asked if they had a smaller T-Mic I could try, and Jill (the audiologist) said she would call Advanced Bionics and ask.
After our initial chat, they started the mapping on my left side. I did the usual routine – listen for the tones and let them know when they were loud but comfortable. After we were all done I asked if there had been much of a change and Jill said yes, I did get quite a bit more volume. After that I had to listen and let them know when the sound was first audible to me. That is always tough because the sound is so slight, you really feel like you’re imagining it!
I explained the way my programs were set up, and we kept them the same – program 1 is my day to day program, program 2 is to eliminate background noise (in the car, parties, stores, restaurants, etc.) and program 3 is half microphone and half Direct Connect for using my MP3 player. I did notice (when I first used my MP3 player after this visit) that my right side is 100% Direct Connect with no microphone. I wasn’t sure if I’d like that but the right side needs more work (it’s been deaf longest) so it’s actually kind of nice to have no distractions coming in on that side. I can still hear well enough having the microphone 50% active on the left side only, and it makes it a little easier to hear my music over the sound of the treadmill having the microphone turned off on the right side.
As always, after the ‘loud but comfortable’ levels were set, then they turned my CI on and I had to let them know how loud it was. It’s usually really loud and I have them turn it down a bit, but this time I didn’t need the volume turned down as much as I usually do. I’ve learned not to go on my initial reaction when the CI is turned on again, because it’s always super loud after sitting in silence for a while. I give it a minute and then form an opinion after I’ve gotten used to it a bit.
We switched to the right side, doing the ‘loud but comfortable’ settings again. This time, however, the third or fourth tone immediately made me so dizzy that the room was spinning. (This was the initial tone that she played, which is usually pretty soft and I have her go up in volume from there.) Although I could hear the tone, it didn’t seem very loud…it just made my eyes spin around in my head from the dizziness! They were both really concerned by this, so they turned the volume way down for that electrode (or whatever it was, LOL). I explained that it was not loud volume-wise, and I could hear the tone, but it was just really making me dizzy. So they told me for this tone, the goal was NO dizziness, and to let them know when it reached the point where it was the loudest volume and I wasn’t dizzy.
They switched to the program where I tell them when the sound is barely audible and set those levels, then went back and finished the ‘loud but comfortable’ portion. None of the tones after that made me dizzy, so that was a plus!
Once all of that was done and the volume was comfortable, they told me I’d be getting a hearing test. Dave told me later that he’d been planning to mention to them the stress I have over these tests, and I surprised him by speaking up before he could say anything! I said, “Okay, now, I have a question about the hearing test…” which just cracked us all up. After we finished laughing, I just came right out and told them how I tend to take the tests – that I hear the sound, press the button, and then hear it again, much softer, and I wait until I hear it again before I press the button. I explained that I’d had a test recently where my CI was shutting down for the high pitched sounds, so I was pressing the button whenever I sensed a change in the sound, and I’d been kind of sternly told to only push the button if I was SURE I was hearing the sound. So I wasn’t really sure how I should be doing it…push the button anytime I hear anything, even if I’m not positive? Or wait until I’m sure I’m hearing something before I push the button?
I think this was the best thing I could’ve done, because it opened up a great dialogue between me and the audiologists about hearing tests and how I react to them. The trainee (I never did catch her name, but I think it was maybe Leeann?) told me to push the button whenever I heard something and not to worry about it. They know a lot of people get stressed about the tests, but it’s just a way for them to measure how I’m doing. We laughed about my tendency to hold my breath and she told me to just relax as much as I can, because it’s not a pass or fail kind of thing. They were just so laid back and nice, and I felt so much better knowing that they knew my little quirks as far as testing goes. It was the first test I’ve gone into without that major sense of dread!
As I mentioned, there were LOTS of tests, first with both CIs on and then each ear individually. I think if I was just getting one ear tested (one-third the amount of tests) it wouldn’t be such a chore. But I did pretty well – they said for the tone test I tested in the “normal range” of hearing, which is their goal for CI patients so they were very happy with that. I think they must have changed something with the mapping because I even heard all but one of the high-pitched electrodes without my CI doing the sound compression thing!
The sentences in quiet went really well, even with my individual ears. I didn’t expect to do very well with my right ear but I think my score was 62% for that ear. It was something like 96% for my left. I know I got 100% on one of the sentence tests and I can’t remember which it was, but I think it was the sentences in quiet. Woo hoo!! Those tests are always so weird for me because I never expect to understand any of them without lip reading. Then if I can get myself to relax, I listen to the sentence and it just kind of clicks. Oh! I actually heard that!
Then they added noise…do we all hate this portion or what?! LOL This noise was LOUD and in the past, I don’t think I’ve ever gotten any of the sentences. I did actually get some of the sentences right with both CIs on, but not many. I want to say I was in the 20% range for that test, but I can’t remember…I should’ve written things down or asked for a copy of the results. Then they dropped the noise down and I did much better on that test….I think my result was in the 90th percentile somewhere. I don’t think they tested my ears individually for the noise tests…well, I know for a fact they didn’t with the loudest noise but I think even the quieter noise test was just done with both CIs on. And then it was over!
They did say that although I didn’t do fabulously on the loudest noise test, the background noise was very loud and a lot of people don’t do well on that. The sound of the sentences was only 10% louder than the sound of the noise. The quieter test had the sentences 20% louder than the noise, which is still difficult for a lot of people, and I got over 90% right. So I guess I’m doing better than I realize.
I never have high expectations for myself with the tests because my whole goal in getting cochlear implants was just to hear SOUND, any sound. I just didn’t want to live in that world of total silence (except tinnitus) any more. So it’s not like I had still some hearing and was hoping CIs would give me perfect hearing. I am just thrilled to hear anything at all, and being able to hear as well as I do is just icing on the cake!
While I was taking the hearing tests, Jill was on the phone with Advanced Bionics about my T-Mic. They do have a smaller, pediatric T-Mic. They aren’t cheap (I think they are $140) but the rep put it in as a replacement for a faulty T-Mic. He could only do it for one ear though; if I want a second one for the other ear I’d have to just buy it (which is fair enough). The ironic thing is that the T-Mic I was replacing really did turn out to have a problem. I got the pediatric T-Mic a couple of days later (they mailed it) which works great for me, and sent the other one back. Since I changed them, I haven’t had ANY static at all. So that solved two problems at once! The pediatric T-Mic is a little small and doesn’t hang down quite as far as it could, but it fits so much better than the large T-Mic and it feels better too – my ear isn’t as sore with this one. So it’s a winner! I’m wearing it on the left ear, which is my better ear. One of these days I’ll splurge and get a smaller one for the other side, but for now this is perfect.
Now my next appointment won’t be until August (unless I have problems before then, of course) and that will be my ONE YEAR mapping! Actually, two months from today is the day I was officially diagnosed as profoundly deaf…it’s been almost a year since I lost all of my hearing. It’s amazing how much can change in just one year! 🙂