The Bionic Sound Project

this girl’s journey to sound

How The Cochlear Implant Works With An Apple iPOD Friday, January 19, 2007

Ian and Aphrodite ask how the cochlear implant works with the iPOD. When I first heard about it, I wasn’t sure how it would work either, but here it is.

Auria with T-Mic earhook, DirectConnect earhook, and cable

 

 

Auria with DirectConnect earhook, attaching the cable

 

 

Auria with DirectConnect earhook, attached to cable

 

 

The whole setup, notice the silver middle – that is the evil static-causing connector.

 

 

Mandy figured out that you could remove it and still play it (I take no responsibility if you do the same) NO MORE STATIC! I’m not sure what the purpose of it is, but I think it has to do something with grounding it against electricity.

 

 

What it looks like when I wear it.

 

 

The only thing I don’t like about it is that I have to change the earhook back and forth whenever I want to listen to music or participate in conversation. The only reason why I have to switch back and forth is because I’ve got my Auria programmed to listen to music alone, because with the hearing aid, I hated hearing all the background noise, as I felt it overshadowed the music.

 

With my hearing aids, I could just pull off the boots, or switch back and forth between microphone (hearing both music and the environment), or just music alone.

 

I’m currently looking into other methods of getting the sound to my ears, such as the HATIS Epic. When the Harmony comes out, the built-in T-Coil will eliminate the whole changing-earhooks and the use of a Y-Split for stereo sound.

 

Some ask, why use the Y-Split? It’s needed because I have two different cables, one for my hearing aid, and one for the cochlear implant, to get stereo sound. (don’t have a picture yet as the cable for the hearing aid is missing at the moment!)

 

Be warned, this method with the HATIS only works if you have a telecoil built into your hearing aid and/or if your hearing aid is programmed for it (if needed). I have a Siemens Triano SP digital hearing aid with a telecoil. I would highly recommend, as with any assistive listening device (other than the cochlear implant) to try it out before you buy it (if you can).

 

Personally, I can’t wait for the Harmony, because I’m tired of having to change earhooks, and having two cables of different lengths and colors.

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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.

 

“It’s A Sound Good Thing” Thursday, September 14, 2006

I’ve been listening to music with the CI at home for the last few hours, as opposed to being hooked up to the iPOD. It’s so hard to describe music with the new map now, but basically my mind is just blown.

At 9:07 pm, I heard my first actual “s” in a song. I heard “Sugar baby” in Crazy Town’s “Butterfly”. I know that I can expect the “S” in my mind, but when you actually experience hearing it in a song (especially one that is considered nu-metal/rap-rock), it’s amazing!

I’ve written about listening to music since the day I’ve been activated. With each mapping session, sounds evolve and change over time, that I just get more amazed with each nuance and discovery that I make with the CI. It’s very interesting for me to analyze it, and what I am missing.

Right now, it sounds so much clearer (especially with the HA on at the same time), but I am getting so much more information in the CI ear that I can’t hear with the HA.

The reason I can tell the difference is because I actually can hear or “feel” the stimulation of the sound, whereas the same feeling/sound does not translate to the HA ear.

That’s one way I have learned to compare if sounds are the same, based on the “feel” in my ear (if I can’t understand it). For a person who may not understand or have the appreciation for sound, this may be difficult to understand. You can differentiate between sound, by its own distinct “feel”, and I am not sure how much of a role residual hearing plays in that.

This whole experience with music is kind of disturbing to me, because I consider myself to be a music fanatic. Right now my perception is being rocked to its very core and will continue to do so as I progress with the CI.

I finally heard some more on the 120 channel processor, and its official name is the Harmony. The difference between the Harmony and the Auria, other than the programming strategies, is that the Harmony will have a built-in T-Mic, and be a “power miser” to deal with the battery drain issues.

I excitedly anticipate seeing what it looks like. I cannot wait to stick it onto my head, and have even more fine control over music and the sound spectrum!

As for listening with the iPOD with the HA, I’m about ready to break the door that covers the electrodes off the HA. It is so difficult to plug in the audio boot because it requires a fine amount of dexterity and lots of patience. There’s this whole complicated process to putting it on, but it makes me prefer the audio boot of my old HA, which I could just snap on quickly. It’s frustrating, because the industrial design side of me, wants to take my training out and put it to use redesigning it! The design flaw makes it neither functional nor practical and is an annoyance when I’m moving about and it doesn’t stay put.

On Tuesday, Apple announced several new iPODs, one of which has a capacity of 80-gb! My wish has been answered! There’s something out there that will fit my entire music collection, which currently tops out at 42-gb. Yippie!

 

“You turned it up like WOAH!”

“You turned it up like WOAH!” – Mandy

I had my first mapping at school today. This morning, Mandy and I were joined by Catherine and Don (the other audiologists that I have worked with), who wanted to sit in on the mapping session. The majority of the CI students have Cochlear, and AB makes up about less than 1/4 of the population here (unconfirmed for 2006-2007), so we had to spend a bit of time getting re-familiar with the program.

The best part of the mapping session today…my brain is definitely ready to utilize the CI!

Mandy, Catherine, and Don were deciding how to best program me, based on my reports that I’ve been making over the last three weeks, and Megan’s reports/programs. The other part that they were curious about is why I had the lower frequencies turned up high, but not the upper frequencies. Speech clarity could be an issue because the upper frequencies were missing/not as strong as the lower frequencies, so they wanted to see what would happen with my brain, if we adjusted it.

So Mandy did speech bursts testing, which is the same as the “beep test” that Megan used to do, except it fired multiple electrodes at once. It was at this juncture that we realized that what I was hearing was soft to moderately soft. This explains why speech has started to sound more distorted over the last week, resulting in frustration for me.

I didn’t have to adjust the lower frequencies as much, but I really adjusted the upper frequencies, and I am pleased to report that speech is starting to sound AMAZING with the CI, in the few short hours that I’ve been programmed. It is also starting to balance out the hearing aid now, which is a great relief to me, because I was worried that I was going to have to go without the HA, because I should be listening with the CI, not the HA.

Don/Catherine both told me that one other person has mentioned the radio playing in their head. Apparently in the past, CIs used to have RF interference, but it shouldn’t be happening today with the newer models. And feeling like that I’m hearing in my non-implanted ear when I don’t wear my HA, has also happened to a few other people. So that’s some burning questions answered that I was very curious about! I was warned that these new programs may drain the battery even faster, so I need to continue with the battery log.

I hung out in the common area while they had their department meeting, because I had speech therapy 2 hours later, and tried to do homework, but was filling out paperwork instead. After their meeting, Mandy chatted with me while she ate her lunch. It was fun getting to talk about non-audiology related stuff. She’s so cool.

My exciting news from Monday…I was asked to be in a film that the school is making, and part of it has to do with Cochlear Implants and the shoot is tomorrow. Mandy just told me exactly what it’s going to be used for, and it wasn’t originally what we thought it was. Eeek. *nervous* We’re both talking about how we have to look extra-pretty tomorrow, because we are GIRLS who like to look good!

 

Mango…The Word That Just Won’t Die Monday, August 28, 2006

The word that just won’t die…MANGO.

Megan said she was going to send me a care package of mangoes to me at school. When I come back in a few months, I’m bringing her a kumquat just because. Maybe an onion. But it better not be a combo of mango and fennel. It’s a good thing we don’t have our own cooking show on the Food Network.

Had #7 today…spent close to 4 hours in there. First I had to see Dr. M. for my checkup. The blood is gone from my middle ear and my eardrum is not purple anymore, but it’s still swollen. He had Megan do a test to see if I have any residual hearing, and I don’t, but it’s probably still too soon to tell.

After that, instead of being in the auditory room, Megan set up in the same exam room that I was in the day I got activated. She had both computers, the programming one, and the Sound and Beyond one. She would tinker with my CI while I was playing with the program and listening to words, telling her what sounded funny as I was going through the exercises, but the picture of the rabbit in the food category is a terrible picture! I was doing pretty well, scoring between 85 to 96 percent with the CI alone. However, I started having trouble with some familiar words, such as cat. And while comparing programs, she would say “how does this sound? what time is it? mango.” just to rub it in because I hate that word!

At one point today, Megan was on a mission to find out just how much I am hearing with my CI, and help me see that the CI is working better than the HA and I’m hearing way more than I think I am.

88% with CI alone.
96% with CI and HA.
80 or 84% with HA alone.

Course, I was cheating because I could not hear the laptop very well with the HA, and had my head right next to the keyboard at intervals so I could hear it, until Megan made me sit up and stay put. :-p

The other thing that has been an issue with the CI is that it sounds good at first, and after a little while, it starts to sound bad (even while I’m still hooked up to the computer). Over a few days, I go from being able to hear voices within a room, to only being able to hear within one to two feet around me. I always thought it was because it was because my neuro-adaptation was fast, but that might not be the case due to what AB said. Kim said they had a patient like that, but that was a long time ago. We also experimented with the pulse width, and at times it would sound awesome, almost like the hearing aid, but there would be a bit of an echo. It’s very frustrating tinkering with the CI, because when one thing sounds good, another thing sounds bad. And there are times I don’t know how to explain it. Sometimes I feel like I’m hearing in my left ear as well, because the sound from the CI seems to “translate” to my left ear.

Megan got on the phone with AB and figured out a plan of troubleshooting. She also taught me how to put the magnet on correctly, in a way that doesn’t twist the wire. We ended up having to go into the bathroom to do that so I could see how she was doing it, and walked past a family that was there for a candidate consultation so it was a little funny. I could also hear people speaking, but couldn’t understand them, and Megan said it was because they were speaking Italian.

The Problem Of Missing/Changing Sound – Solution
1. Make sure wire for magnet is secure, and placed on head properly.
2. Change out T-Mic (possible moisture?)
3. Change Battery (possible low power?)
4. Dehumidify it (and I need to stay on top of making sure the crystals are yellow, cuz the moisture from the environment affects it too.)

I am still not used to the concept of older people getting CIs. My experience has been that younger people and children have CIs, but never people who are in their 40s or older. I’ve always seen them with little ITE hearing aids, or just deaf, while us kids have had the BTEs or the CIs. I’m going to have to get used to it.

Kim had to remind me today that I’m doing extremely well with my CI, and that I need to be patient. She reminds me of and sounds so much like mom, with the “no nonsense from you” talk, and knows just exactly how to get me to shush and stop to think, just like mom does. “How long has it been?” “And you’re getting a score of what?”…”3 weeks…and 96%.” “That’s pretty good.” So here it goes…..I’ve got three programs to experiment with for a week and a half to two weeks. It’s going to be a challenge to leave my CI alone and learn to appreciate it without any adjustments in that time period. Patience is NOT one of my virtues as Dad has reminded me.

Kim also told me that her patients seem to prefer Verizon for their cell phones, so that’s something to keep in mind. I’m hoping that my phone can make it until the full-QWERTY version of the Blackberry Pearl comes out in Q1 2007.

In NY news, I talked to Karen, and she’s going to talk to Mandy about how they can best work with me when I return. I’m going to miss seeing Megan, Kim, and Dr. M, but I will see them in a few months. I really don’t like saying goodbye, especially to people that I like working with. Sometimes it’s nice to finish what you started, with the people you began it with. And this is why being bi-coastal stinks…I can’t have the best of both worlds in one place. I always have to say goodbye to a group of people in each place and adapt to a new environment and time zone two times a year, and I hate it (especially when I have to leave my family).

Today’s Sounds List
– Recognizing clapping at a restaurant
– Mom coming up behind me at noisy restaurant and saying “Sweetie”, and me not paying attention

That was my first recognized word on its own, where I’m not paying attention, and able to understand it without having to think about it.

 

Listening Ability? How Does One Learn To Listen? Friday, August 25, 2006

It’s only been almost 3 weeks, and I’m already worried about the CI and my listening ability.

I wonder if I’m doing the right things to maximize my potential. Am I listening to the right stuff? Am I doing the right kinds of things to try and maximize my speech perception? All these types of questions and thoughts have been swirling around in my head.

I’ve been so used to doing therapy, therapy, therapy, and getting feedback from what I’m doing, that right now I feel like that what I do, on my own, isn’t helping. Everything I do has a visual component to it. It’s difficult to watch TV or read along with books, because I fall back on my “hearing aid” training, and use my vision more than using my brain to listen and understand what is being said. At the same time, I’m not getting the reinforcement of “yes, what I heard or thought I heard is indeed correct.”

On Monday, Susan said that I need to write for myself and not for others (where have I heard that before?). She wants me to write a daily log of my adventures in sound, and what I’m hearing, so that I can look back in 6 months and go “wow, that was a really rough time, but look where I am now and at what I’m hearing! YAY ME!”

I do well with the words in a list format, but have trouble with sentences. Mom did word lists with me, after I saw Megan earlier this week, and she started a new category of vegetables with me. However, I got it the hard way, instead of “mushroom”, “lettuce”, “tomato”, I was getting “portabella mushroom”, “bibb lettuce”, and “roma tomato”. That’s pretty much standard for our house, as we get different kinds of specific veggies for my guinea pig. However, I did get “jalapeno” right on the first try! She’s also been reading my favorite childhood book, “Cars, Trucks, And Things That Go” to me for listening practice. I love that book so much.

Today, I saw Megan for #6 and we tinkered around with the speech program some more. I have trouble with “C” and “M”, and hearing the first part of a word. I also told her about my concerns with listening. I know I don’t have patience (especially for somebody my age, as I was reminded by my dad on activation day!) and want more! She brought out the other computer that had the Sound and Beyond program that was made by Cochlear Americas. I got to play with it for awhile, and it was fantastic. I loved how if you get a word wrong, it repeats the correct word and the wrong word, so you can compare it.

This kind of program is right up my alley because it has a similar concept as the Touch&Tell that I had as a kid. What can I say, I love hands-on learning! It is awfully expensive, 290 dollars, but it might be an investment well worth making if it will help me, and I did enjoy using it…I could have played with it all day if I was allowed to.

I got 76% on the words when we played with the computer, she said I was doing pretty well for just under 3 weeks. The other cool thing this program does is that it plays music and then lets you pick which instrument produced that melody. I was able to get the piano and the xylophone right. But when it came to the violin, ughhhhhhhhh it sounded horrible! And I used to play the violin! But the piano sounded much better (after 10+ years of playing, I should have an ear for it).

Electrode #13 doesn’t have that special sound for me anymore. It’s so weird, because it sounded nothing like it did the last time. Megan did the beep test again today, and Electrode #6 sounded exactly like my mom’s old car alarm (park avenue) when it goes off. Now I have a way to describe what it sounds like to those who can’t hear what’s in my head!

T-Mic Hook: P1+2 – speech, P3 – 70/30 mix for DC.
DC Hook: P1+2 – iPOD only, P3 – 70 iPOD/30 environment.

I also have a battery log that Megan created so I can find out if I have a bad battery, a bad “charging slot” or if it’s just the program that is draining my battery fast on the CI. I do have powerful programs on my CI which draws a lot of power off the battery. My 18 hour battery is only lasting 12 hours, and I was totally unprepared for that the other day when the CI battery died on me.

 

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