Get the Balance Right

It’s been a year since my last mapping, which is CI-speak for reprogramming my cochlear implants.  When I first got them, I went to the audiologist weekly for new maps.  Then I progressed to every month, then 3 months and finally, 6 months.  This is the first time I’ve gone a year between mappings.

The audiologist who did my last 2 mappings was out on maternity leave, so this time I saw Kathy.  She did my original hearing tests when I first lost my hearing in 2008, and also did my CI assessment.  However, she was on maternity leave when I had my surgery and was activated, so she has actually never done a mapping for me before.  I was excited to work with her again because I really liked her and she was so nice and helpful when I was going through my evaluation process.

Kathy was still with another patient when I was brought back, so a different audiologist (Kris, who did my activation and most of the early mappings) and intern/student got me started.  They took me right to the sound booth for testing (my favorite thing, whee).  There doesn’t seem to be a set pattern with this – sometimes I’m given the hearing tests before my mapping and sometimes they wait and do it after I’ve been mapped.

I started with the tones, and they let me choose which ear to test first.  I opted to go with my right ear first, which is the one that’s been deaf the longest and performs worse on these tests.  It stresses me out the most to have this ear tested by itself, so I figured I’d get it over with and then my results would get better from there on in.  This actually took away some of my ‘perfectionist’ stress – the hearing tests always make me feel like a bit of a failure, even though I know that’s ridiculous.  (I mean, if I was tested without my CIs, I wouldn’t be responding at all – I looked at my hearing tests from when I lost my hearing and the marks are almost all along the 110 db line with little arrows down to 120 db, and a couple around 100 db.)  But starting with the worse ear and working my way up made me feel like I was accomplishing something as my responses got better.  Just one of my weird personality quirks, I guess!

They tested each ear separately and then both together.  I always forget to ask for the results of these tests (so I don’t have official results in front of me) but they did mention that I didn’t give a response for some of the higher frequencies.  These are still almost impossible for me – if I get anything at all, it’s just the sensation of the CI processor compressing the sound down because those high pitches set off the noise compression program.   This time I didn’t even sense that – I guess I just wasn’t hearing the higher pitches at all.  I think this was with my right ear – I know she said it happened with one of my ears, not both.  (I was using my regular listening program, not the background noise compression program, but even the regular program will compress.)  We did work on the high pitches later on during the mapping; more on that later.

After the tones, I listened to the man speaking sentences.  Last time I was tested, the audiologist spoke the sentences and I did much better than normal, especially once they added in the static/background noise.  This time, I did pretty good in quiet – I’m not sure about my right ear, but I got 100% correct with my left ear only and with both ears.  In noise, I think I just caught a couple of words with my right ear – it is very, very difficult for me to pull his voice out of all the background noise – and I did better with my left ear, and then FAR better with both ears.

I was quite relieved to get out of the sound booth and go back to the office for the official mapping!  Kathy started by asking me to just talk to her about my hearing for the past year.  I explained that for at least the past 6 months, I had been using the background noise program pretty much exclusively.  (My cochlear implants can store 3 different sound processing programs or strategies.  I have one for regular listening in Slot 1, one for background noise compression in Slot 2, and one for the Direct Connect earhook in Slot 3.)  The regular listening program was just too loud; I felt like it was overwhelming, my voice sounded very loud and echo-y to me, and the background noise compression program was just more comfortable.

I had really not used my Direct Connect program at all – I was mainly using this to connect to my mp3 player when I was using the treadmill, and now I walk with Dave on a daily basis and almost never use the mp3 player.  So I asked if I could try a T-coil program on that third slot instead (to help with the phone and utilize things like FM and loop systems that usually use T-coil).

When I get mapped, I have to take off the CI that is not currently being mapped.  I hand the other one to the audiologist and she removes the rechargeable battery and slips on a connector that connects my CI to her computer via a long cord.  Then I put the CI back on.  During all of this, I don’t hear anything at all so I rely on speech reading.  She hands me a chart to use to indicate whether the sound I’m hearing is too loud, too soft, comfortable, etc.  There are probably 8-10 different levels of sound I can indicate on the chart.  This time, I also got a chart to use for comparing the volume level of two different sounds.  This was totally new to me and I really liked it – she was using it to try to make sure all the electrodes were at a similar, comfortable volume.

So I’m sitting there in total silence and then all of a sudden I hear a “boop boop boop” sound coming into my ear.  I listen for a second and then indicate if it’s comfortable, too soft, too loud, etc.  Then I hear a different tone for a few seconds, then the original one.  Now I have to report whether one sounds louder or softer than the other.  It’s kind of tricky, because they are different in pitch – some are high pitched, some are low – and I need to just think about how loud they sound.  Most of this mapping was done with comparing the volume of two different electrodes, and it was really interesting to do it this way.  I felt like it really helped to be able to compare the volume of two different sounds rather than just listening to one and reporting whether it was too loud or too soft.

Once all the electrodes are mapped (and I’m still connected to the computer), the CI is turned on and I have to listen and let the audiologist know how things sound.  My initial reaction is to always say it’s too loud, partly because when I first put my CIs on, the big rush of sound is always a bit loud and overwhelming.  If I wait a couple of minutes, things settle down and sound okay.  So Kathy reminded me of this, and suggested we just talk for a few minutes.  I had Dave talk, so I could see how his voice sounded, and the four of us just chatted for about 3 minutes.  I was surprised to find that I didn’t need the sound lowered after all – things started to sound really good and comfortable volume-wise.

The right side was mapped the same way – I took off my left CI, was connected to the computer and, again, I compared the volume of two different tones for the majority of the mapping.  I still have some high pitched tones that just make me completely dizzy – I hear them and my eyes feel like they are spinning around in my head.  I discovered that I already had one electrode turned off on the right side (there are 16 electrodes on each side) and Kathy ended up turning off two more.  If I remember correctly, I think she said that they were probably in a part of the cochlea that wasn’t effective and if they stayed on, things would sound worse (and I would get that vibration/dizzy feeling).  When they turn off an electrode, the frequencies get allotted to another electrode so it doesn’t affect the quality of what I hear.  I hadn’t even realized I had one electrode already turned off on the right side, so this was a very informative mapping session.

Things sound really good now – she worked on those high frequencies to make sure I’m getting more of them.  Even though I don’t like the sound of high frequencies, they are really important for speech and clarity.  Now I’m using the regular listening program 90% of the time, and I only switch to the background noise program if I’m in a really loud situation.

I also found out that my background noise program was only at 40 IDR (Input Dynamic Range, which basically is how many sounds are allowed in).  Normal IDR is 60 (I believe she said it used to be 70).  You can have your IDR set up to 80 if you wish – it’s all about what you feel sounds best.  But 40 is pretty low!  She changed the IDR to 50 on my background program and made my other programs 60, but said I can have it increased if I want (or lowered).  Right now I feel like it’s a good setting for me – I can tell I’m hearing more on the background program, but the loud noises are still compressed so it’s kind of nice to get a bigger variety of sound.

I will probably go back sooner than a year if ClearVoice is approved before September 2011.  That’s a new software strategy that is currently in FDA trials and is awaiting final approval.  I know quite a few people outside the US that have it already and really like it, so I asked Kathy to email and let me know as soon as it’s available here.  She said they are going to start training on it in October (next month).

One final note – my SlimCell batteries were starting to last for only about 6 hours, which is really short.  I’ve noticed since my mapping that they last longer, which is kind of weird – but it’s a nice side effect, so I’m not complaining!

An Amazing Year of Sound

It’s been a year since my initial CI activation, the day I was first given my external processors and my brain was introduced to sound through my cochlear implants.

My Activation Day was August 20, 2008, and it was crazy-hectic because it also happened to be the day my daughter was registering for her freshman year of high school.  This year, she was scheduled to register for sophomore year on August 20 again.  Even though she was currently living at her dad’s for the summer, and had told us she wanted to make a permanent move to his house so she could go to school out there, I still hoped she’d change her mind.  So I told Dave to make the appointment for my one-year mapping on the 21st and to keep the 20th free, just in case.  I didn’t want to chance another repeat of trying to fit too many things into one day.

Paige came home the weekend of August 14, for her first visit all summer.  We celebrated her 15th birthday and went to the movies.  And she gave me a gift:  she asked to come back home.  Of course, we welcomed her with open arms, and finally the house feels normal again.  To say that I am thrilled is putting it mildly!

So we all left bright and early Friday morning for my one year mapping.  It had been six months since my last one in February.  A mapping, by the way, is done with an audiologist who is trained to program cochlear implants.  Each of my processors is hooked up to a computer and programmed based on my responses to the sound that I hear.  Each of my implants has 16 electrodes that can be manipulated with this software.

I told my audiologist, Jill, that things have actually been sounding too loud the past couple of months. I’ve noticed I’ll start the day with the volume around 10:00 and some days never make it louder; other days I might go up to the 11:00 mark but very rarely 12:00. If I go up to 12:00, everything sounds very loud and like it’s echoing.  (Usually the CIs are programmed with the volume wheel at 12:00, which is like “0”.)

Based on that, we started off by setting the sound levels again.  To do this, I listen as tones are sent to my ear through the CI and I let Jill know when the sound is loud but comfortable. On the left side, which is my better ear that has been deaf the shortest amount of time, I had her leave most of them the same; I think there was one or two that she turned down a bit.

On the right side, I actually needed more volume for the first 3 tones I listened to. This makes me wonder if maybe the issue was more that I needed more volume on the right…and I had been turning the left side down to make things sound more even. The right ear is the one that’s been deaf far longer, so it has more work to do than the left.

However, the last 2 or 3 tones on the right side were super high pitched and just made me dizzy. I could hear them, but they weren’t loud — they just really made my eyes feel like they were spinning around in my head. So she turned those down until they didn’t make me dizzy any more but I could still hear them.

Once I got all the volume to where it was comfortable and clear at the 12:00 volume mark, we were set. It was time for the hearing tests.

Long-time readers of my blog know that I get really stressed out at hearing tests. I hold my breath, trying to hear the tones. I just can’t seem to go into the testing booth and be relaxed.

So this time, I tried to psyche myself out a bit. I decided to approach it as if it were a trial or study I was participating in. I mean, I always thought it would be cool to be part of a clinical trial, and I imagine it would consist of a lot of these tests. For whatever reason, I associate a trial or study with positive feelings. And it actually worked!  I was able to feel like I was helping someone out by doing this testing, and just relax and listen.  When we got to my worse ear, the right ear, I tried to just focus on the fact that it was so cool to actually be able to hear with that ear (for the past 15 or more years, they would test me and I’d never even respond on that side).

I still have a problem with super high tones just activating the noise compression program on my CIs, which makes the sound damp down when they are played, so for some of those I couldn’t give a response. I assume my hearing test with the tones was pretty much the same as always because Jill didn’t really mention those results.

After the tones, we did sentences. I sat in the booth and listened as sound came from the speakers (no headphones) and repeated what I heard.  I listened in quiet with both ears, then each ear by itself. The CD player was broken (YAY) so Jill just read the sentences to me, covering her mouth so I couldn’t lip read.  I got 100% with both ears, went from 96% to 100% with my (better) left ear, and from 60-something % to 80-something % with my right ear. (I should have written the numbers down…one of these days I’ll remember to do that.)

Then she added static. Now this is where I really don’t do well. With the man speaking sentences on the CD, it’s like his voice is the same tone and volume as the static, and it just gets lost for me. Last time, they had to turn the static down to get much of a response from me. With the original static level, using both ears at once, my Sentence in Noise result was 19%.

This time, I had it easier because it was Jill’s voice and not the man on the CD. The static was at the original, louder level though. I was VERY nervous because the static was so loud. She started speaking and it was just like her voice cut through the static and I could hear her just fine. I got 100% on the Sentence in Noise test, with both ears!  (They don’t test me in noise with the individual ears.)

As we walked from the booth to the mapping room, Jill said, “Could you hear the static?!”  I had to laugh, because it was so loud to me — but my results were so drastically different that I think she thought her static button was broken.  (I did notice that at one point she stopped the test, turned the static off and then on again.)

I’m not sure how I would have done if I’d had to listen to the man on the CD instead of Jill’s voice, so it might not be a fair comparison.  I have a feeling my results wouldn’t have been 100%, but I do think they would have been far better than 19%!

I had her program my backup processors with the new levels, and Dave asked if I should be switching between my regular processors and the backups.  Jill said it would be a good idea to switch them out periodically so if I end up having a problem with the backup processors, I can get them replaced while they’re still under warranty.  I like that plan, so I’m going to switch out my processors each month, just to give them all more of an equal workout.

I don’t need to go back now for another year, unless I have problems in the meantime.  It’s been a couple of days since my mapping and I’m really happy with the way things sound and the volume levels, which I’ve been able to wear at the 12:00 mark all day long.

My cochlear implants make each day a little miracle, and I will never take them for granted. It’s been an amazing year of sound!

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! 

Quick Question

I’ve got my 6 month mapping tomorrow (already?  six months?) and as usual, I’m already dreading the hearing test.  It’s got me wondering how many people do what I do when I get these tests.  If you read this and would like to leave a comment, I would love to know!

Okay, the part that gets to me is when the sound gets really soft.  The first couple are always loud and easy for me.  Then they get really soft and I start to wonder if I’m really hearing it or anticipating/imagining it, or maybe a little bit of tinnitus.  So there will be a soft maybe-sound, and I just sit there thinking, “Hmmm…was that real?”  And I wait until I hear it again, maybe a little louder, before I hit the button.  I usually don’t hit the button until the second time the sound plays.

I also notice that usually it’s loud and then right away it plays again, softer…almost like an echo.  A lot of times I don’t hit the button on that second, immediate sound.  I wait til I hear it again to be sure I heard it, and then I hit the button.

So how do you take hearing tests?  Am I the only one who does it this way?  (And holds her breath during the test, LOL)

The Mapping That Wasn’t

When I first got my cochlear implants activated at the end of August, I was seeing my audiologist once a week for a mapping.  A mapping is basically an adjustment of the software program in each of my implants.  In the beginning, I was mainly getting more volume at each mapping.  My brain was still getting used to interpreting all this new data being thrown its way, and the more used to it I became, the more volume I could handle.

After a couple of weeks my volume needs stabilized, and then I started getting different software programs to try out.  There are different ways to fire the electrodes in my implants, and each way makes things sound different.  I needed to decide which software programs worked best for me.  Since my cochlear implant sound processors (what I wear on my ears) have three program slots, I can have three different programs available to me.  I tried programs that cut out background noise in the car, background noise at parties or restaurants, and programs meant to work with the Direct Connect, which is a special earhook that I can use to connect to battery-powered devices like MP3 players.

After I went for weekly visits for 6 weeks in a row, I got a break from mappings.  This past Thursday was my first mapping in 6 weeks, and it was my official 3 month mapping (3 months since I was activated).

We got to the office, I checked in and sat down.  I heard footsteps and looked up, thinking it might be my audiologist coming to call us back.  Well, it was my original audiologist, Kathy, who had left on maternity leave before my activation date.  It was so good to see her!  She waved and I got up to talk to her and catch her up.  She really is nice and was so supportive when I went for my CI evaluations.  She said she’d heard I was doing great and I confirmed that I just absolutely loved my CIs.  I told her I was hearing better with them than I did with my hearing aids (before I lost all of my hearing, of course).

I also mentioned that Paige can tell when one of my batteries has gone dead.  Sometimes the battery will die when I’m in the middle of something, so I don’t immediately go and change to a new battery.  Once when I was talking to Paige she got a quizzical look on her face and said, “Is one of your CIs not working?”  I said, “Yeah, my battery died…how can you tell?!”  She said my voice gets much lower and it sounds like I have a really bad cold.  Even Dave confirmed it – it’s an instantaneous change in the way I talk if one (or both) of the CIs is off.

Anyway, I went to sit back down after I was done talking to Kathy and one of the other patients in the waiting room stood up and approached me.  He said, “Excuse me…I heard you talking…do you have an implant?”  This is the first time ever that I have been asked about my CIs so I was excited!  I told him yes, and he said he was really scared because he’d been losing the hearing in one ear and an implant had been suggested to him, but he had never met anybody with one.  Right after we started talking my audiologist called me back, so we only had another minute or so to talk.  It really seemed like he was hearing me well so either he was extremely good at lipreading or his other ear was okay.  I wasn’t totally sure he meant a cochlear implant or if it was maybe another type of implant, since he mentioned having many surgeries on the ear and they weren’t helping.  But in the short space of time that I had, I was able to tell him that I absolutely loved my CIs and didn’t regret getting them even for a second.  I’m not sure what his whole story was but it was still nice to get to spread the word about CIs!

Once we got back to the mapping room and I told Krystine that things had been going really well, no volume issues or anything, she decided not to change anything at this appointment.  I was a little surprised but not disappointed, since I haven’t felt like I needed more volume or that things have been sounding weird or flat or anything like that.  So this visit ended up just being a hearing test, basically.  You know how much I love those!  Ugh!!

It started with the tones, the usual “press the button when you hear the tone” kind of thing.  I started in with the holding my breath again, and really had to force myself to breathe and to calm down.  I don’t know what my problem is but these hearing tests just stress me out so much.  A lot of times I think I hear a tone but I don’t press the button until I hear it a second time, because I want to be sure I’m really hearing it.  I never know if that screws the results up or not.

Again, some of the higher pitched tones would just activate the sound compression in my CI.  So I didn’t hear them … I could just tell the sound was shutting down temporarily.  That happened just once or twice…I’m not sure if they just stop testing me in those frequencies when that starts happening or if it’s not happening with as many of the high pitched tones as it used to.

These tests take FOREVER because they test me first with both CIs, then one ear, then the other.  Then they moved on to the sentences.  For the first time they tested each ear individually.  Last time they had me keep both CIs on and they tested me in quiet and again in noise.  So I listened to a recording of a man saying sentences.  It was pretty soft and at first I thought “Oh no, I’m not going to get any of them!”  But the sentences in quiet, with both CIs on, went pretty well.  Then they did the sentences in quiet, each ear by itself.  That was drastically worse, and I pretty much expected that because it’s what happens when I try to hear on the phone.  I’m only using one ear on the phone and I can catch a word every now and then, but not enough to feel comfortable actually having a conversation.  With the sentences it was the same way…I could catch a word or two.  My left ear did much better than my right ear in the individual tests.

When they did the sentences in noise it was horrible…I could barely catch anything.  Not even enough to make a guess – I just sat there, not saying anything most of the time.  I did do a lot better with both CIs on though…I’m not sure I caught any of the sentences in noise with just one ear at a time.  So for me, anyway, having two CIs makes a huge, huge difference in my comprehension!

When the hell of the hearing test was over, I thought the results would be worse than last time (six weeks ago).  However, after Krystine did the comparison it turned out that I went from 96% sentence comprehension in quiet to 98%, and in noise it went from 53% to 58%.  What a surprise!  (That’s with both CIs, by the way — she didn’t mention the results with one CI at a time.)

She didn’t mention my audiogram with the tones at all and I didn’t ask, so I have no idea how I’m doing with that.  I’ll have to make sure to ask her when I go back for my 6 month appointment in February.

And that was pretty much it!  I had forgotten to bring my backup processors with me to my last appointment, so they had an old program on them.  I brought them this time though, so she put my current program on them and I was good to go.  I don’t go back again now until February 6, next year!  (Obviously though, if I have any problems I can make an earlier appointment for a mapping.)

So this wasn’t really a mapping at all…just a hearing test, basically.  I keep trying to put a positive spin on the hearing tests (“At least I can hear something now, versus the tests where I just sat there because I heard nothing!”) but man, I still hate them.  I guess I always will! 

Snap, Crackle, Pop

Yesterday I heard something I’ve never heard before.  I actually never knew there was a sound associated with this activity at all.  It’s not like a mosquito or fly buzzing…both things that I know make noise but I’ve never actually heard.  This is something I just always assumed was silent.

It was…bubbles popping.  Every now and then Dave will pull out the bottle of bubbles and blow bubbles for the cats.  Some of them just like to watch the bubbles floating down, some like to pounce on them, some are actually afraid.  I was sitting on the bed, putting my CI’s on and watching the room fill with bubbles.  I realized I was hearing a soft snapping sound.  I looked around, trying to place it, and happened to be looking right at a bubble as it popped in mid-air.  Snap!  I watched a few more to be sure I was connecting the sound and the activity correctly…and yes, I was really hearing the bubbles popping!  I always thought it was just a soundless thing.  Even with hearing aids I never knew bubbles made noise when they popped.

This week has been the first week with no mapping since my CI’s were activated on August 20th.  My last weekly visit was on Sept. 25.  I thought I would just be getting my one month post-activation hearing tests, basically.  Instead, Krystine set all the thresholds for the lowest sounds I could hear (previously I had been giving her the loudest sound levels that were comfortable).  That really took a while because I had to be sure I was really hearing the sound and not just imagining it…it was very, very faint.

The Fidelity 120 program is a keeper – I’ve had no problems with my left processor turning completely off like it was doing before.  I can still tell that the CI’s are dampening the high-pitched sounds but she must have adjusted something when I mentioned it to her, because it doesn’t do it nearly as much as it used to.

One thing I noticed is that if I try to critique sound when I have just one CI on, it’s always the same comments no matter what changes she makes:  the left CI usually sounds a little echo-y and kind of low pitched (voices sound more like Darth Vader).  The right CI sounds more high pitched and sharp, with voices having a touch of the chipmunk or helium sound.  Once I have both CI’s on at the same time, everything equalizes and sounds normal.  I really can’t say enough good things about being bilateral!  It is just a completely different sound with two CI’s on versus one or the other.

After all the tweaking of the software and once we had all the volume levels set, I went in for another hearing test.  This time I was able to hear some of the high pitched sounds but the CI’s did dampen down for some of them.  I could tell right away what was happening so I just let them know which pitches were activating the sound compression on my CI’s.  Krystine didn’t mention how I did for the tone portion of the test so I assume my results were consistent with the past two tests.

Next they did the sentences, where there’s a man’s voice coming through the speakers and you repeat the sentences he’s saying.  This was the test I got 44% on the week before.  This time I got 97% correct!  So it was either the newest mapping or the fact that I was used to the Fidelity 120 program after using it for a week…or maybe a little of both.  Either way, we were happy with the results!  They also tested me with noise added, which was much more difficult.  I only got 55% correct for that part.  But on a positive note, that’s better than I did with my hearing aids (before I lost all of my hearing) so even that test showed some improvement!

Now I’m on my own until November 6, when I have my 3 month post-activation mapping.  So far things have been just fine.  I still find myself turning the volume down at the start of the day…I can’t just put the CI’s on at the normal volume level or it’s too overwhelming.  Usually by dinnertime I’m up to the normal level and I rarely go past that setting unless we’re watching TV.  Sometimes I’ll turn the volume up a little bit then.

I did get my new program for the Direct Connect.  I have a regular program in the P1 setting which is 100% T-Mic (Fidelity 120-P).  The P2 program is for loud settings, to compress background noise, so I use it in the car, at the mall, in restaurants, etc.  And now my P3 setting is for the Direct Connect.  This is 50% regular mic and 50% T-Mic, so that when I use the Direct Connect to listen to my MP3 player, I can still hear some environmental sounds.  So if Paige or Dave talks to me, I can hear them.  I really, really like this setting – it’s the best of both worlds!

Listening to music with the Direct Connect is pretty cool.  At first the volume was just way too much…I actually had the MP3 player on volume level 1.  If I turned it up, everything just sounded like noise.  But I experimented and found that if I increased the volume in small increments, it just took a minute or so for the noise to turn back into music and to sound good again.  I was able to get up to volume level 7 this way.  (I actually don’t know how loud the MP3 player goes – I can’t find the manual right now.)

The telephone is still incomprehensible.  But television sounds a lot better.  That buzzy edge to the sound is gone, and even some of the music is starting to sound good.

So now I guess I need to get with modern technology.  I threw some Depeche Mode onto the MP3 player really quickly, but I don’t know anything about this little device.  I figured I would start with music I already know, but my kids are eager for me to hear the bands they like too.  Eric was teasing me – when I told him that on louder volumes, the music just sounds like noise, he told me he would send me some music….then he laughed and said, “I could send you noise bands, like Merzbow!”  (Their music is supposed to just sound like noise, I guess!)  We agreed that yes, that would be mean, so I made him promise not to do that.  Instead he sent me some songs by the Decemberists, which he swears I will like.

And always, I just keep coming back to how mind-blowing this is.  I’m talking about discovering new bands…and technically I’m deaf.  I’m deaf and I can hear my cat purring as she sits next to me.  Unbelievable!!

Mapping Session Weirdness

So this was kind of a weird mapping session.

I had mapping #5 on Thursday, Sept. 18.  Krystine had a student with her this time (whose name I didn’t catch).  We started by sitting down and going over how things went in the past week.  I let her know that my left processor was still shutting off at random times, and giving me the solid red light.  It just turns off completely, until I remove the battery and slide it back on…then it works fine.  She seemed really surprised and said she had done everything she could think of, the week before, to keep that from happening.  So she called Advanced Bionics to get their opinion.

After she explained the situation, they recommended switching me to the Fidelity 120 sound processing strategy.  Originally she was going to give that to me on my last weekly mapping (which is tomorrow, Sept. 25).  I was pretty excited to be getting it a week early, since I’d heard such good things about it!

Originally she wasn’t going to check my volume thresholds, since I mentioned that I had kept the volume pretty much at the normal level all week long with no need for extra volume.  But since I was switched to a new processing strategy, she did a short volume threshold check in each ear.  Then she had me go live with the Fidelity 120.

It all sounded very quiet and very high pitched.  I was kind of disappointed because it really sounded very different from what I had gotten used to over the past few weeks.  I had her bring the volume up a lot.  She also had me listen to the background noise program and the program for driving in the car, which is a different type of sound compression.  Then she did something and said, “How does that sound?”

WHOA.  It was very loud again, and it seemed like I was hearing a lot more.  She asked if I preferred this and I told her yes.  It turns out she originally had me on Fidelity 120-S instead of Fidelity 120-P, which is what I prefer (the P, or paired firing of electrodes).  So we brought the sound down a bit and I listened to my other 2 programs and they were both good.

I was happier now because things sounded more like what I was used to, just with more “detail” and less of a fuzzy, buzzy edge to certain sounds.  Things sounded more crisp and sharp.  We set the thresholds in the right ear and went through the same process until everything was set.  I listened with both CI’s on to make sure things weren’t too loud.  For my 3 programs I have a regular listening program on P1, one for restaurants, stores and parties (to cut out background noise) on P2, and one to cut out road noise in the car for P3.

At this visit she also programmed my backup processors, so they both have Fidelity 120-P on them now as well.  I brought my Direct Connect earhooks and she showed me how to use them with the cables.  Luckily Dave already had a connector that can accept two inputs for my MP3 player.  I plug this adapter into the headphone jack of my MP3 player, and it has a place for each CI to plug in.  I’ll have to get some pictures and post about how I use it to listen with my MP3 player.

Right now if I use the Direct Connect, all I hear are the sounds coming from whatever I’m connected to (basically just the MP3 player…I can’t think of anything else I would use it for since we don’t have a laptop or portable CD player).  I asked Krystine about that and she said it’s easy to give me a program where I can also hear environmental sounds too.  I wasn’t sure if I would want that but after trying it at home, I definitely would like it.  It takes some time to get everything switched out and connected, and if I want to be able to hear someone talking to me, I have to switch everything back (change earhooks, etc.) which is kind of a pain.

Anyway, after we went through the attachments and how they work, and I confirmed that I can only use them for battery-operated devices (nothing that gets power from being plugged into the wall, for instance) she decided to give me another hearing test.  UGH.

Krystine and the student accompanied me to the sound booth and I was given the button to press when I heard a sound.  Okey dokey.  This is where it gets weird.

First I’m tested with both CI’s on.  I made a conscious effort to stay calm and not hold my breath.  I thought I was doing pretty good, but I still really hate when the sounds get so soft that I’m not sure if I’m really hearing them or not.  It’s more like, I can tell the absence of sound when the tone finishes.

Then it sounded like the tone was just one long, sustained sound.  Huh.  I would keep pressing and pressing the button.  The student was doing the test and I thought maybe she was doing it differently.

The door opened and Krystine asked me, “Is your left CI working?”  What?! She comes in and checks, and it’s fine.  That’s weird.  Why would she ask that? (Looking back now, I think it’s because I wasn’t responding for the high pitched tones and that CI was the one that was able to hear them when I was last tested.  My right CI didn’t respond to the high tones.)

They a did a few more high pitched tones and Krystine opened the door again.  She told me, “Be sure to only press the button if you are really hearing the sound.”  Okay.  Now I’m embarrassed, thinking that it must look like they think I’m making things up and pretending to hear sounds I don’t. 

We kept going.  She opened the door and said the same thing one or two more times, about making sure I really hear the tone before I respond.

Then Krystine is gone and it’s just the student.  She tests me wearing each CI individually.

Then I put them both on.  Krystine comes in and tells me I’m testing better with the CI’s individually than I am with both of them in!  This is crazy.  I know, without a doubt, that I hear better with both of them on.  What is going on?!

So she leaves the door open and stands in the doorway.  The sounds, by the way, are playing through a speaker and I’m not wearing headphones – I’m just sitting in the room.  She says, “Can you hear that?”  I shake my head because I hear nothing.  Then I realize she’s talking but I don’t really hear her…then I hear her voice come back into focus.  Oh my God.  The CI’s are compressing the high pitched sounds!

So I tell her what’s going on.  They test it with a few more tones and each time, that’s what is happening.  The CI’s are compressing out the high pitched sounds.  I can tell when they happen by the sound coming back up to normal levels after the tone finishes.

So they give up on the tone test and she tells me she’s going to play a few sentences for me to repeat.  Originally she wasn’t going to do this test, because she wanted to give me time to get used to the Fidelity 120 program.  But she decided to just do a few sentences, just to see what happens.

This is the part of the original test that I never responded to, a man saying sentences.  I repeat what I hear, even if it’s just one or two words.  Then the volume is a little louder, and that’s much easier.

By now we’re about 20 minutes past the one hour mark, so my appointment has gone much longer than usual.  Dave actually fell asleep in the CI room, waiting for me to come back!    He knew something must have gone wrong, he just couldn’t figure out what it might be.

Krystine took a minute to compare the results to my previous tests, and then came back.  My tone test was about the same as the last one.  The first sentence test was at normal speech level, around 45 db, and I got 44%.  I consider that to be pretty darn good, since I got 0% at my original test.    When they raised the volume just a little, to 50 db, I got 92% correct.  She was happy with that, and so was I!

So tomorrow is my final weekly mapping session.  I’ve been noticing that the Fidelity 120 program does seem to be compressing sound more than the regular HiRes 90K-P program, but I still like the way it sounds much better.  I’m going to see if she can either turn off the compression or, if there’s a sensitivity setting, not have it be so sensitive.  I do like knowing it will compress really loud sounds, but it tends to do it even for speech at times.  I’m not sure how they will be able to accurately test my hearing if they don’t turn the sound compression completely off.  I’m glad, though, that we figured out what was going on and why I wasn’t giving a response for those high pitched sounds.  Hopefully tomorrow I’ll have a better test result!

On a final, positive, note…the Fidelity 120 did solve the processor problem.  It hasn’t turned off once since this mapping session! 

Fourth Mapping

On Thursday I had my fourth mapping, three weeks after activation day on August 20.  It was hard to believe it was already time for another mapping…the week passed so quickly, and I was still not even at the normal level of volume.  I never used the louder program at all.

I wasn’t really looking forward to this mapping, after the stress of the previous week with the audiogram and all the testing with sentences.  I was kind of keyed up and just looking forward to getting it overwith.

When we went into the Mapping Room, I told Krystine that I hadn’t even gotten to the normal level of volume throughout the week and maybe I was a little overzealous at my last appointment when she set the volume levels.  I also explained that the left processor was still turning off at random times and showing the solid red light.  We asked about the power saver mode (thinking that turning it off might help with the processor problem) but it turns out she turned that off last week.  My batteries, by the way, still have about half the life that most people get from them.  Good thing I have a lot of batteries to switch between! 

We started with threshold settings again, with me hooked up to the computer and telling her when the tones were too loud.  As with last week, this went very quickly…I just heard a few tones and she was done.

It’s funny, I have a tendency to just listen and not really say anything.  She always hands me a little chart that has the volume levels listed on it (soft, medium, loud, loud but comfortable, too loud).  I forget that she doesn’t hear what I hear, and if I don’t tell her how it sounds at each point, she has no idea.  I guess I assume that she knows she started the sounds at a soft level so I was just listening and not saying anything.  Now I try to make a conscious effort to say, “Okay, that’s very soft…that’s medium…” and so on.  Some of the high pitched sounds are hard to really determine…they never sound LOUD but if the volume goes up enough, they make me want to cringe.  So I use the cringe-factor more than the volume for those tones!

It’s always weird now when I get hooked up to the computer, because I have to remove my other CI as well.  I always hesitate at first, because once I do that I’m back to relying solely on lip reading.  For much of the time when I’m connected to the computer, I don’t hear anything at all.  Periodically she’ll have me go “live” as she’s setting programs on the computer but most of the time there’s no sound.  I mentioned that to Dave after we left, because I think he thought I was hearing sound the whole time I was hooked up as she programmed the CI.

She did say something about calling Advanced Bionics for help with something – I think it might have been trying to find a way to troubleshoot that red light/processor shutting down problem.  She called them and was on the phone for a bit, then said, “Oh, I remember now” and hung up.  I’m not sure if she actually did speak to someone or if she was on hold.

She had me listen to a few different programs but I don’t know what they were.  When we first got there, I told her that I preferred the HiRes 90K-P to the 90K-S program because I could hear more sounds with 90K-P.  I’m not sure if she was having me listen to different HiRes 90K programs or if maybe she tried the Fidelity 120 programming.  Most of the programs I tried that day sounded much quieter and much more high-pitched.

After that, we switched the right ear and did more of the same.  More time was taken up during this visit as I listened to the various programs and let Krystine know how things sounded.  With one of the programs, the high-pitched sounding one, I could barely hear Dave’s voice at all.  It was weird…his voice just kind of disappeared.  It’s really cool, though, hearing through these different software programs.  It’s mind-boggling!

We talked for a while about how I was doing with the CI, things I was hearing and how I felt about the whole experience.  (Very happy!)  Krystine told me that my programs now were: a regular program at P1, a program for noisy situations like restaurants and parties at P2, and a background noise program for situations like driving and road noise at P3.  All of the programs are HiRes 90K-P.  (I had to ask which processing strategy I was using – that’s not information she just voluntarily offers.)

This coming Thursday, my 5th mapping, I need to bring my backup processors and they will get programmed as well.  I’m also bringing the Direct Connect and cables so she can show me how to hook directly to battery-operated devices like an MP3 player.  I’m going to ask about the phone, if I should hook directly to that with anything or just use my T-Mic and put the headset to my ear.

Apparently the 6th mapping is when they give me all the tests I had for my CI evaluation – kind of a before and after thing.  Of course, I’m not looking forward to that but I know it needs to be done!  Krystine said if my next appointment goes quick enough, we might be able to get everything done (meaning the testing) at that appointment and I won’t need to come back for the 6th mapping.

A couple weeks ago she had mentioned that I would get Fidelity 120 at my last appointment, but she didn’t bring it up at this visit so I’m not sure if I’ll be getting Fidelity 120 this coming Thursday or not.  For all I know, one of those programs she had me listen to was Fidelity 120!

After these one week appointments are finished, then I go for a mapping 3 months after my initial activation (that would be somewhere around Thanksgiving), then 6 months, and then one year after my initial mapping.  After that I go on a yearly basis.

Then that was it!  No sentences to listen to and repeat, no audiograms.  Whew!!  We left and I was just starving since this was an early morning appointment (8:30 am).  We decided to stop for breakfast since we hadn’t eaten before we left the house at 7:30.

This was my first visit to a restaurant since my activation, and I got a chance to try out P2.  It worked much better than I expected it to!  I could hear the background noise – all the talking was kind of a low babbling, where I could tell it was voices but not actually hear what people were saying.  When Dave or the waitress spoke, I could hear their voices clearly.  Dave was also using a new noise suppression program on his hearing aid and it was working well for him, so for the first time we actually went to a restaurant and could hear each other!

I used P3 in the car and again, it worked so well – the road noise just faded away but I could hear Dave speaking clearly.  Both P2 and P3 don’t sound as full and clear as my regular program, because of the noise compression, but I am still in awe of how programs like this work.  It’s so weird how I can hear the voices of people I want to hear, but all the other sounds fade to the background.  Dave and I almost always order food and go pick it up, then bring it home to eat.  It’s pretty rare for us to actually eat in a restaurant because it’s always been too difficult to hear.  Maybe now we can actually go out to eat from time to time and enjoy ourselves instead of suffering through the meal!

It’s Sunday now as I write this, and again the volume is just fine.  I still have to turn it down for the first part of the day and usually by dinnertime I’m up around the normal volume level.  It seems like my volume levels are kind of stabilized now because I haven’t been feeling like I need to keep turning up the sound to hear everything.  In fact, the sound is sometimes still overwhelming at the normal level, especially in the morning.  When I first put my CI’s on it is still really, really loud for 5 or 10 minutes.  I try to stay in quiet areas of the house and not talk out loud until I get used to sound again each day!

By the way, our magnetic induction stove hasn’t proved to be a problem and doesn’t affect my CI’s at all.  I can hear a very low pulsing sound but that’s about it.  I used to hear that sound with my hearing aids too so I’m used to it.  I still think we’re going to get a new stovetop soon because I’m tired of only having two usable burners and it’s too expensive to repair this cooktop (we did it once and the burners only worked again for a couple of weeks).

It’s cool, humid and rainy here…perfect cooking weather!  Dave is watching football and freaking out (and I can hear every swear word…LOL).  Life is good! 

Another Day, Another Mapping

My third mapping was on Thursday (Sept. 4).  I’m halfway through my weekly mappings now – they go through Sept. 25 and then I’m not sure how often I’ll be going.

It’s really different now, waiting in a waiting room.  I usually don’t bother to read a magazine because Krystine comes to get me just a few minutes after we get there.  But I’m much more relaxed now, not as “on alert” as I am without the CI’s.  It’s still habit to keep the doorway in view, even out of the corner of my eye, but I think I would be able to hear her saying “Wendi?” even if my back were to the door.  Amazing!

This mapping once again started with me listening to tones and increasing volume, if I needed it.  It seemed like I only listened to 4 or 5 tones and she was done.  I did mention that my left processor has been randomly shutting down.  If I slide the battery off and slide it back on again, then it’s fine.  But I do get the solid red light that is a warning that there’s a problem.  I’ve read that this happened to other people on the power saver mode so I might mention that to Krystine this coming week.  Even after I mentioned it on Thursday, it still happens now and then.  It didn’t start happening until after my second mapping (in the office) when I was finished listening to the tones and she gave me the CI back.  So I think something happened at that time.  I’m not sure if she put the power saver mode on before or after the processor started shutting off randomly.  In any case, the power saver mode hasn’t changed my battery life at all so I really don’t mind if she takes it off…especially if that solves the problem with the processor randomly shutting off!

We did the tones and volume for both ears.  When she has me go live with both ears, it’s always way, way too loud.  I have to have her turn it down quite a bit.  This time I had her leave it a little louder than I normally would have, because I’ve noticed I get used to the volume pretty quickly.

Apparently I’ve been using HiRes-P (with the electrodes firing in pairs) all this time.  I could swear she told me I was using HiRes-S (electrodes firing sequentially) after my activation was done!  In any case, she put a HiRes-S program in the bottom (P1) slot, my usual HiRes-P in the middle slot (at the current volume) and a HiRes-P program with a bit louder volume in the top slot (P3).  I’m assuming I’m still using 100% T-Mic because she didn’t mention otherwise.  She told me to switch back and forth over the next week between the HiRes-S and HiRes-P to see what I thought.

She did have me test to make sure the programs were all in the proper position because last week, my programs were reversed!  It was supposed to be quietest on P1, regular volume on P2 and loudest on P3.  After a day or two I realized things sounded quieter when I went up to what was supposed to be the louder program.  No wonder things sounded so amazingly loud when I first put my CI’s on…I would put them down to P1 first thing in the morning, and that turned out to be my loudest setting!  I asked Krystine about it and she checked and yes, they were reversed (for which she profusely apologized).  I was just glad that I could sense the differences and not just take it for granted – it was kind of gratifying to find out I was right. 

Once we finished getting the volume for both CI’s set and I was comfortable (although whew, it was loud!) we went to the booth for me to get my first hearing test since I lost all of my hearing in April.  I wish I’d gotten a copy of this test!

I was really, really nervous and stressed when I went into the booth.  She had me sit without headphones in the booth, with both CI’s on, and press a button when I heard something.  She said it wouldn’t really sound like a tone, more like a noise.  Most of them did actually sound like tones though.  What I tended to do was click when I heard the first tone (which was pretty loud) and then I would hear a second very faint tone almost immediately after the first loud one.  I never clicked when I heard that – it sounds like an echo to me, almost.  I would wait until I heard it again, so I could be sure I was really hearing it.

I started holding my breath because everything was so, so loud with this new mapping and I felt like the sound of my breathing was keeping me from hearing the softer sounds.  Then I would have to gasp and take a big breath, hoping that there no tones being played while I was doing that heavy breathing.    It was crazy!

After a bit she had me take off my left CI and just wear the right.  I was trying to regulate my breathing and stop holding my breath, because it was making me more nervous and distracting me.  The process of taking my CI off and getting settled helped me to just start breathing normally and try not to freak out so much.

After my right ear was tested, I put the left CI back in and took off the right so she could test my left ear.

The test was all done in tones, with no sentences … at least, I never heard any sentences! 

Once we were done, we went back to the mapping room.  Krystine got my old hearing test and marked my current results so we could compare.  Obviously I expected a huge improvement from my last result, which was pretty much just a line along the 110/120 db mark for both ears.  I was surprised to see that this audiogram also showed my last test wearing my bi-CROS hearing aids – I don’t even know when I had that test, to be honest.  I didn’t remember ever doing a test with my hearing aids on!  It had to have been back in 1993 when I lost my hearing in my right ear, I guess.

If I’m remembering correctly, the line for my left ear (with the hearing aid on) was around the 60 db mark.  My right ear hasn’t been helped with a hearing aid since before 1993 so I don’t think it was even on this paper.  But…with my CI’s on, I test around the 40 db range with each ear!  Krystine said that basically when I have my CI’s on, I have what would be classified as a “mild” hearing loss.  I went from profound, totally deaf, to “mild”.  Amazing!!

I was surprised to find out, though, that even with the CI my right ear still dropped off to around the 90 db range in the high tones (I can’t remember where exactly, maybe between 2000-4000 hertz).  Krystine said it’s possible my hearing nerve was damaged in those higher ranges, or maybe it will even come back in time.  This surprised me so much because my right ear is the one that seems to hear in treble…I feel like I get high pitched sounds so much better with that ear.  I guess maybe it’s just that I notice them more with the right ear, since I haven’t heard them with that ear pretty much ever in my life.  Who knows?!

Krystine did mention that if I ever had to just wear one CI, for whatever reason, she recommended wearing my left CI because it does hear all the ranges, from low to high.

After reviewing the audiogram, she told me we were going to try some more sentences.  Oh man, I really hate doing this!  It is so stressful, and I don’t know why because she’s very laid back about it.  It’s not like I get slapped on the hand if I get a sentence wrong!  We went through about 3 pages of sentences, and I got maybe 3 or 4 wrong.  Then she read 3 or 4 paragraphs and asked me to paraphrase what she said – not repeat word for word, but just give her the general idea of what the topic was.  I got all of those right…and then we were done.  Thank goodness! 

She seemed really happy with my progress, and I’m personally thrilled.  It is so strange to be able to actually understand what someone is saying without reading their lips!

On the way home I tried out the HiRes-S program because everything was just so, so loud on the HiRes-P setting.  HiRes-S was extremely quiet though – I had mentioned that to Krystine when I tested it in the office but it’s set at the same volume the HiRes-P program is.  She did say that if I preferred HiRes-S, she could increase the volume for me.  I’ve switched programs in different settings – in the car, at home, watching TV and shopping in a store.  It’s different…it sounds more high pitched but much, much quieter.  I definitely don’t hear as much with that program as I do with HiRes-P.  I have to increase the volume with the volume knob to be able to hear much at all with it, and so far I definitely prefer HiRes-P to HiRes-S.

I did start getting some pain on the left side of my head that evening – in the area where the magnet attaches.  It was a weird pain, that felt like needles stabbing me if I rubbed my hand in that area.  It didn’t hurt otherwise though.  I wasn’t sure if it was from the haircut growing out (I got another buzz cut right in the magnet area last week) or if it was because I’m using that stronger magnet and maybe the swelling has gone down now so it doesn’t need to be so strong.  I rubbed my head where the magnets attach on both sides and there’s a huge …well, lump sounds a little dramatic, but there’s definitely a bump that I can easily feel.  I’m not sure if this means the swelling has gone down now and I can feel the implants better, or what.  I did switch to one of my backup headpieces yesterday, since that has the original magnet inside.  It did attach to my head but it kept falling off.  Finally I just gave up and put the original headpiece (with the stronger magnet) back on.  I’ve been putting it on top of my hair to give my scalp a break, instead of pushing my hair out of the way and attaching it right to my skin.  Today (Sunday) it feels better so that’s a relief!

I’ve been periodically trying the phone but it’s still nearly impossible for me to hear, even with the amplifier all the way turned up.  I can catch a few words but that’s it.  I told Dave I think the reason I have so much trouble with the phone is because I’m hearing with just one ear instead of both.  As I mentioned in my last post, my performance with both CI’s is just tremendous, but it’s far less impressive if I’m just using one ear.  I tried the phone on my right ear (which was truly strange, since I haven’t put the phone to that ear…ever, really – I think I’ve always used my left) and that wasn’t any better.

Next I tried listening to a CD with headphones on.  I’ve been mainly hearing music through the TV and it sounds very buzzy and weird.  If it’s just one instrument I can hear it well and it sounds very pleasant.  If it’s more than one instrument plus a vocal, it pretty much sounds terrible.

I put a Depeche Mode CD in my computer and listened with headphones.  Although it’s not perfect and not exactly as I remember it, it was really much better than I expected it to sound.  I had to keep myself from crying, to be honest – this is music I’ve been listening to since the mid 1980s and for a while there I never thought I would hear it again!  I realized I was hearing certain instruments in certain ears.  I’ve never heard anything in stereo so I’m not sure this is how it’s supposed to be.  I asked Paige and she said she never noticed that before.  But I could distinctly hear certain sounds in my right ear and other sounds in my left.  I heard tones and notes that I’ve never, ever heard before in these songs!

Finally, while the volume was nearly taking my breath away even as recently as yesterday afternoon, now it’s settled down to a normal level.  I’m almost able to put the volume knobs back at 12:00 (they’re around 11:00 right now).  It’s so weird how my brain adjusts even though at first it seems like I’ll never be able to tolerate the volume!  My own voice is usually what’s unbearably loud.  Dave was listening to the TV through headphones today and made a comment that I wouldn’t be able to hear the TV, since the headphones were connected.  I said, “Oh no, I hear it.”  He checked and checked, and then realized I was hearing the sound as it came from the headphones (which were on the coffee table).  He couldn’t believe I could hear that!  I couldn’t tell what they were saying, but I definitely knew it was the TV.

AMAZING.  I love my CI’s.  Have I said that lately?!

What’s the Buzz

Here’s what’s happening:

The buzzing is gone!  I pretty much never get that weird buzzing sound anymore.  When I first put my CI’s on in the morning now, it is just VERY loud.  It takes about one minute for the sound to level off and get normal again.

I had my second mapping on Wednesday morning, Aug. 27.  I’ll be going once a week through the end of September for mappings, and then I’m not sure how frequently I’ll be going.  The schedule they gave me only covers the first six weeks.

The visit started out just like my activation appointment, without all the magnet drama.  Krystine had me listen to all the tones and tell her when they were loud but comfortable.  This time I was able to tolerate much louder volumes, and when we were all done I asked her if my volume had increased.  She said it had, a lot.  That’s normal though, and to be expected. 

After all the volume thresholds were newly set, I went “live”.  WHOA.  It was really, extremely loud – way too loud for me to tolerate.  So she dropped the volume until I told her it was better.  Then she did the same thing as last week, setting a softer program on P1, the regular volume I had selected in my threshold check for P2, and a little louder for P3.  I was actually on P1 in the office because the volume was still loud for me but it was tolerable at the P1 setting.

As we were talking, the processor started turning off for no apparent reason.  She would check, take it off my ear, put it back on…it’s fine.  A few seconds later, dead again.  It was really weird!  We switched batteries even though I had just put freshly charged Plus batteries in about 4 hours earlier.

She ran some diagnostics on the processor and then did an internal test on each of my electrodes.  She said I may or may not hear something during the test, and it was really long.  It took 15 minutes or more and it was really boring, just sitting there.  I could hear the clicking as the electrodes were tested, though, which was kind of cool.  It would click away, then start cycling through the whole thing again either at a louder volume or in a different pitch.  I was really relieved when it was over and we could get things moving again!

Whatever she did worked, because my processor has been fine ever since.  She did mention that one of the things she did was put it on Economy Power Mode (or something like that) since I had mentioned how quickly I was going through both types of batteries.  She was hoping that would give me some more battery life.  Yesterday (my first full day on Economy mode) my Plus battery made it to about 12 hours on the right side and 14 hours on the left.  I’ve noticed some days I get more life out of them so we’ll see how things go over the next few days.

We set the thresholds on the right side, and again the volume was increased a lot.  And again, when I went “live” it was much too loud, so she brought it down a bit until I could tolerate it on P1.

The right side processor was fine and never cut off like the other one did.  Krystine went ahead and internally tested my electrodes on that side as well.  It was boring but did go faster on that side.  And I’m happy to know all my electrodes are okay!

I filled Krystine in on how much I loved my CI’s, how the sounds changed over the first week, and also told her how the right side sounded more treble and the left side more bass.

She told me that for the first few weeks, the main thing we’ll be doing is re-setting the volume.  Usually it needs to be increased a lot each week, and then it starts to level off.  Once that happens, we’re going to start adding the other strategies/programs like Fidelity 120.  I’m still using HiRes 90K – S right now.  She also turned off the second microphone (up near the top of the CI processor) and I’m 100% T-Mic in each ear now.

Once we were done with the volumes and electrode testing, I noticed voices were much easier to understand.  Dave’s voice had lost a lot of the raspy and growly tones that were bugging me so much before.  He was a lot easier to understand.

To wrap up the visit, Krystine pulled out a book with sheets filled with sentences and words for listening practice and evaluation.  We went through about 5 to 8 of these sheets.  I was really apprehensive when I realized what we were going to do, since I did so badly the week before and my perfectionist Virgo personality really hates to fail tests!!  I just dread hearing and vision tests. 

She covered her mouth with the screen and then she would read a sentence and I would have to look on the sheet of paper to find what she read, then read the sentence back to her.  Sometimes she just said sentences and I had no paper to look at, I just had to repeat them back to her.  She read a list of words and had me tell her what they were (no paper to refer to).  She would say two similar-sounding words and I had to pick the word she said (referring to a sheet).

A few times I had to have her repeat the words or sentences before I got them correct.  But I surprised myself by getting most of them correctly on the first try!  After we were done, I turned to Dave and asked if he was able to get them all.  He grinned and said there were a few that I got that he didn’t get!  (On the other hand, he was able to get some of the ones that I missed on the first try.)

Still though, for only being activated for one week I was absolutely thrilled with the progress I made!  Just last week I couldn’t understand any of the words she said.

My homework was the same this week – read out loud to get used to the sound of my voice.  She also recommended some beginner level (i.e., kindergarten) books on tape for listening practice.  We have to get over to the library to see if they have any I can check out.

I had a true CI moment as we walked out of the doctor’s office.  A man was wandering in the hallway, looking confused. He was looking around at the doors and numbers, and asked me in passing, “Is there a directory here?” He wasn’t looking at me since he was peering around at the doors, and I understood him without lipreading!

After My Week 2 Mapping

I found a great resource for online aural rehab sources:

http://www.bionicear.com/userfiles/File/Websites_For_Listening_Practice.pdf

I came home and tried to listen to a voicemail on the phone.  The dial tone was much louder and very clear this time.  However, I could just barely hear someone talking so I ended up passing the phone over to Dave.  Krystine said it would be a while before I should really try the phone but I couldn’t resist seeing what it sounded like!

When we first walked into the house, it was overwhelmingly loud.  I wasn’t even sure I could tolerate the volume.  We have fans going all over the house, even when the AC is on (they help circulate the cold air around the house).  All I heard was this roaring sound from the fans.  I couldn’t even hear my keys clacking on my keyboard as I typed.  I mentioned it to Dave and we turned the fans down to their lowest setting.  He was going to turn them off but I told him I wanted to see if I could get used to it.

After an hour or so, I could barely hear the fans.  They were just a very low hum in the background, and all the more important sounds came back into focus.  Awesome!! 

I really love how my CI’s handle loud noises.  The sound dampens down for a few seconds, then it comes back up so I can hear everything well again.  The background/loud noise, though, is barely noticeable.  It’s like the CI’s know what sounds should be foreground and which should be background, and they also keep sounds from being so loud that they make me cringe.  It’s amazing!  Even after just 1-1/2 weeks now I feel like I’m hearing better with my CI’s in most cases than I did with hearing aids.

The few things I still need to work on are the telephone, the TV (still has a strong buzzing sound to it) and music.  Sometimes music will sound better after a while, but usually if there’s music in the background (overhead at a store, or in the background of a TV show or movie) it makes everything else sound kind of weird.

I had another kind of gross CI moment yesterday morning.  Dave and I were sitting in the living room at our computers, talking.  I kept hearing this very quiet “click” on a fairly regular basis.  Finally I asked Dave what it was.  He thought it was me clicking a button on my computer but it wasn’t.  It happened during a lull in our conversation and I said, “There!” Then again.  He definitely heard it too but couldn’t identify it so he got up to look around.  He walked into our bedroom, which is at the total opposite end of the house, and came back amazed.

“I can’t believe you heard that!”

It was our cat, Sabrina.  She had an ‘accident’ in the bedroom (hence the ‘gross’ factor) and was trying to cover it up.  Every time her paw brushed the dresser, I was hearing it.  She’s declawed though, so there’s not much to hear!  (And no, we didn’t declaw her, poor baby – she was that way when we adopted her.)  I joked to Dave that it was like being able to hear a cotton ball brushing up against the dresser since her paws are so furry and she has no nails.  I guess I was hearing her paw pad!

Now I can hear and understand Dave talking to me in the car if we’re driving at night.  I turned on the dishwasher last night and it was so loud that I thought something was wrong with it!  It sounds like gears clanking and clacking.  I always thought the dishwasher was so quiet…I used to have to put my hand on it to feel if it was on or not.  I worked out today and heard the instructor’s voice (on DVD) again!

It’s been so weird to hear the voices on TV shows that we started watching when I couldn’t hear.  (I was going to say “When I was deaf” but I’m still deaf.  Hmmm)  There are a lot of shows where I’d never heard the actors before, like Generation Kill on HBO.  We started watching that in July, I think, and watched the season finale on Sunday.  For the first time I got to hear the guys talking and singing.  They never used to caption the songs they sang.  I didn’t catch the song until Dave told me what they were singing in this episode, but once I knew, it all made sense – it was “King of the Road”.

Getting Old

I turned 44 on Thursday.  It was a low-key day, we just went up to the mall for some shopping and then brought home dinner from Outback Steakhouse.  But what an awesome birthday – my CI’s were the best gift I could ever get!!

And Finally…Half Empty Nest

I’m not sure what’s worse…having a teenager who drives you crazy so that you’re thrilled when they leave home (but you suffer for all the years they do live at home) or getting along really well with your teen and then feeling your heart break open when they move out, because you miss them so much!

Just for the record, I really, really miss this guy:

Eric and Me, in his dorm room

That’s me and Eric in his dorm room, doing the NIU Huskie “sign” (which looks a little like heavy metal devil horns, LOL).

Eric loves loves loves college, his dorm and the people there.  That makes it a little easier for me, because I know how happy he is.  Still though…it feels like just a few years ago I was taking him to preschool.  How can he be in college already?!