The Bionic Sound Project

this girl’s journey to sound

Initial Test Scores for Sound & Beyond Monday, September 18, 2006

There are moments where I miss the simplicity that hearing aids have when it comes to listening to sound in its wholeness, and hate the CI for not giving me that same access to sound. Then there are the rare moments where the intricacies of sound are revealed to me with the CI and revel in the amazement of it, and I fall in love all over again with the CI.

Listening with a CI is *NOT* a quick update or a quick fix to hear music or sound in its entirety. It takes lots of practice to get to that point.

The baseline test scores for S&B from Friday, 9/15
Consonant – 15%
Vowel – 35.42%
Food Words – 94%
Melody – 75%
Instrument – 61.1%
Animal Words – 98%

These scores help the program pinpoint where I should start and what I need to work on. Today, it assigned me to start with Level 2 for vowels, and Level 1 for consonants.

Unfortunately, this afternoon I was feeling frustrated and apathetic. While doing the consonant training, I had to determine which sound was the different one out of three, but had no idea what was being said. I can tell which one is different, more than 80% of the time, but it drives me crazy that I can’t UNDERSTAND what is being said.

It really bothers me that with some words, the only way I can differentiate is to compare how they “feel” and what kind of pulse is happening in my head. Sometimes I’ll hear a speech sound and then the rest of the word is a pulse. This is not what I expected sound to be like. But the point is that I have to train myself to listen to it and just got to keep working at it, and have PATIENCE.

I am also having problems with the sound dropping out, or gaps where there’s absolutely no sound (especially when its really noisy, it seems as if it’s overloaded the CI so no sound comes through), and Mandy realized that Megan had set the RF to manual. She changed it to PoEM, so now program 1 is with PoEM, and program 2 is same as program 1, but on manual. Program three is the same from last week, where we added gains in the high frequencies.

Today, I woke up at what I thought was 16 minutes before I had to leave for my class. I shot out of bed, and turns out it was only 7:17, but I still overslept by more than 45 minutes. I somehow changed the time on my clock instead of the alarm clock to get more sleep. As a result, I didn’t get to do my hair today, and it made it difficult in terms of wearing the CI (especially with wet hair).

In the book, AB suggests shaving around the part where the magnet is (which makes sense, but not necessary in my case as the hair’s already thin there) so the other option is wearing a headband.

I told Mandy it’s a good thing the 80s are back in fashion, because I would be in style with a headband. But first I need to get clothes that go with headbands! I love the 80s, especially the Hypercolor t-shirts!

But the one sentence I understood while waiting outside Mandy’s office, was her saying “thank you very much” as she hung up the phone.

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Post-Activation…One Week Later (Mapping Session #4) Tuesday, August 15, 2006

I am OH so VERY excited. Although, probably not as excited as Megan or Mom was. I don’t think I’ve seen Megan that excited. Today was definitely an awesome day, because not only did Christina Aguilera’s new CD come out today (which I now have in my possession *squee*), I also got some test results with my CI (even more *squee-worthy*).

The answer to last week’s programming riddle: program 1-pulsing, program 2-sequential.

I now have two new programs, and they are getting to the point where they are starting to sound like my “natural hearing”, but faint. There’s still much more twiddling to do with these, but I am confident KNOW that I will reach that point. Even music is starting to slowly sound better.

After programming, I got to do a pure-tone audiometry test in the soundbooth with my CI, testing program 1, then 2. And I have the results of the audiogram. The vertical column measures how loud a sound has to be in order to hear it. The horizontal column is the frequency (or pitch) of a sound, going from low to high frequency.

 

6/22/06 – professional results

 

This is what I can hear with digital hearing aids. The sounds in the “speech banana” is around where normal people with normal hearing can hear it. This is with my hearing aids, and I still can’t hear the high-frequency sounds, so I am sorely lacking in that department.

 

 

8/15/06 – professional results

This is what I can hear with Program 1. My lower frequency (to the left) sounds have improved slightly, but my high frequency sounds have shot way up. I can now hear F, Sh, Th, K, and some others.

 

8/15/06 – professional results

This is with Program 2. This one is a bit louder than P1. Same results as P1, but with a few minor variations in the higher frequency.

Overall, you can see how I’ve changed, going from a digital hearing aids, to using a CI and the results I’m getting one week later. It’s just absolutely mind-boggling and incredible to me, to be able to hear all these high-pitched sounds that I wasn’t able to hear before. I am very excited, happy and looking forward to what’s next!

As soon as I got those results, I went to surprise mom at work, and her face just totally lit up and she was so happy! While walking back to her desk, she was showing the results off to her co-workers, and everybody was amazed, heh. We then went out to lunch with her co-workers (since it was lunchtime when I arrived), and it was my first time in a restaurant since I’ve been activated. I could hear the differences in people’s voices (at our table), and knew if a different person was talking. I could hear speech sounds with the CI that I wasn’t hearing with the HA. Words were fuller and had more detail (but still didn’t make sense to me).

I also had my first speech therapy session with Susan at 3:30 this afternoon. I am going to have to learn to differentiate between similar words but with different sounds/placement. The other fun thing I will learn to work on is tone of voice without using facial/body cues. Gotta start small, then work my way up! Right now my brain is waking up, learning to interpret what all these sounds are that are coming in, and then eventually will start putting some sense to them. It’s kind of like learning how to walk, except you’ve never walked before.

So far, everything is fantastic. I have no regrets. Everything that I went through in July, was well worth it for what I’m getting now. The only negative I have right now is that my incision is itching like mad and starting to become red. We were going to try to switch it to the other side of my head to give my ear a chance to heal (and get the itchiness to go away), but the cable for the headpiece isn’t long enough to pull that off.

I’m starting to wonder if I’m already getting used to this program, because things are starting to sound really quiet once again, so I may be making a trip back to see Megan sooner than later.

Starting today, my hearing aid has started to give me an attitude. I think we have a raging case of jealousy right now, and an unwillingness to coexist peacefully.

New Sounds List
8/14/06 – the word “Now” while listening to Harry Potter.
8/14/06 – hearing benny purr with CI, and realizing it that I couldn’t hear it with the HA.
8/15/06 – differentiating between voices at my table, while in a restaurant

 

2nd Mapping Session less than 24 hours after the 1st one! Tuesday, August 8, 2006

Today I went back to see Megan (less than 24 hours after I had my first mapping session!) to fix some things that were going on with my implant.

I told her about how I emotionally fell apart last night, right after we got home. Both Megan and Kim reassured me that it’s normal to react strongly, and that I’m not the only one who has fallen apart after getting activated. That, and I think the stress of everything since June (mom’s back surgery, my two surgeries, etc.) finally caught up with me. They also told me that other patients were unhappy from anywhere between 1 week to 6 months before they finally liked the way the implant sounded. I also talked about how I felt like I had a radio playing in my head after I took the implant off, and she thinks I may be hearing phantom noises.

They also said that I could come in tomorrow, Thursday, or Friday if I needed to, and we could play around with the implant some more. I felt bad because I didn’t want to take up all their time, because they have other things to do, only to be told “No no no. You’re not taking up our time. We are here to help you and we want you to do well. In fact, our favorite thing to do is Cochlear Implants! So don’t feel bad! And we’re free most of this week.”

Megan started off with trying to eliminate the problem with the “shocking” sensations I was having. We turned off each electrode to see if the shocking would go away, and if things sounded better, and going back and forth. Eventually we turned off electrodes 1, 4, and 8. Electrode 1 sometimes happen because it’s the very first one to enter into the cochlea, and sometimes it’s too deep to provide stimulation. Electrode 4 we don’t know why but we will try again in a few days or weeks. And Electrode 8 was not a surprise to her, because it is right next to where the doctor drilled the hole for the implant, and he did have to drill it 1mm wider 2 weeks ago. She had trouble with getting a response from it in surgery, due to a gigantic air bubble that was present. Hopefully it will clear up soon so we can put it into use.

The volume was also turned waaaaaaaaaay down, and the threshold levels were also lowered. I went up too high too fast with the electrodes, (but it sounded great yesterday!) and when I got into the real world (which is completely different from the quiet and calm of an audiologist booth), I was overwhelmed and getting painfully shocked to the max. My ears are power-hungry and have always been, because they’ve had power Hearing Aids for their entire listening life. Mandy (the audiologist at school) also told me this as well, because I kept wanting “more power!” Kim and Megan talked about how I may not need as much power with this to “listen” because more power = more distortion. We also got rid of all the static that I was hearing with the implant.

Megan also did some more of the words that we used yesterday to see if I could understand them. I’m doing better today, and starting to hear more of the differences in sound (like ‘ch’ in March). Identification is still spotty, but it was better than yesterday. I’m also starting to feel the “sounds” moving around in my head, instead of just on the top of my head…sometimes I “hear” it in my left ear, or on the back of the left-side of the head.

In addition to the fine-tuning, I got new processing strategies/programs today.

The first program is the one I started off with, just a little bit louder (after all of today’s adjustments were done). It’s a “sequential” program, which sends the information like playing scales/chords on a piano. She told me that most people tend to stick with the very first processing strategy that they start off with after activation.

The second program is a “pulse” program, which sends information like chopsticks on a piano. The third program I think is the same as the first program (but I’m not sure how it’s different), but it sounded the most like my hearing aids to me, and I liked this one the best (at the moment). At this point, I need to keep my hearing aid off for awhile, because my hearing aid is “overpowering” the implant (even after I turned the volume down as low as it could go), and I’m focused more on listening with the ear that I can hear more with.

Megan also gave me some information for my friends, so everybody can try to calm down (including me!) and understand how the implant is going to work, and the process of understanding sound, because we’re all excited about it, and that excitement is causing to have a little bit of too high expectations (especially in me). I love you guys very much, but we need to step back and take baby steps.

I also have a xeroxed listening journal and it’s so cute. It has a “listening scavenger hunt” in which I can write down when I first heard a specific sound on the list, and when I first am able to identify it on my own. It’s almost like a baby’s 1st… kind of book.

After that, I left all happy and relieved because I wasn’t being shocked in the head anymore, and because it sounded much better now. I was writing down the times into my sidekick, when I got an email from Mandy (my school audiologist) who wanted to see what was going on and how activation went (since I hadn’t talked to her since surgery #2). Then Dr. M came out of his office just right before I went out the door, and looked surprised to see me there. On the way home, I listened to Christina Aguilera’s first CD, and couldn’t hear “Genie In A Bottle” but I was getting some of her voice in “So Emotional” and “Reflection”, and the first part of “Come On Over Baby (All I Want Is You)”. I can’t really hear the music at all, but the vocal part is what I’m hearing (sometimes).

When Mom came home, I updated her on everything, and she went over the months again with me, and she was happy because I was able to hear the ‘ch’ in March. I’m having trouble with March/May/June, and the J and F in January/February, but I can hear “uary”. She repeated one word that I’ve always said wrong (without telling me), and covered her mouth, and I was able to say it back to her correctly on the first try, which I’ve always said incorrectly.

Right now, I’ve been attending to the job of listening with each program for a few hours, and keep track of information about how it sounded and differences with each program. I’ve been listening to National Public Radio (suggested for practice) for most of the afternoon, and it’s mostly just pulses on the top of my head (I think my brain is getting tired), but I do pick up a part of speech now and then. I only seem to hear speech when it’s up close to me. Background noises exist as a pulse on the top of my head.

But right now my hearing life is basically pulses. A few speech sounds here and there, but that’s it. It’s good enough for me for the 2nd day. I am happy.