The Bionic Sound Project

this girl’s journey to sound

Tape, Paper, Scissors Tuesday, November 7, 2006

Today’s in-class demo was cool. Not because of the techniques we were learning, but because of what I could hear. I was enthralled with the discovery of different sounds.

When the room was silent, from a distance of 15 feet or so, I could hear the “thrrrp” of the masking tape as strips were torn off. The “nnshhhhhttt-nnsht-nsssht” of the scissors cutting through the posterboard. And the “crrkthhttttt” as the two halves separated from each other.

I’ve been able to hear it with the hearing aid, but only if I was the one who was wielding those items and making the noises. The tape was especially cool, because I’ve never heard the sound of it ripping off. Pulling it off from the roll, yes, ripping off, no.

I couldn’t hear it with the HA from that distance, but I could with the CI, and the sound was much more detailed than I remember with the HA. I almost wanted to ask him to keep going with the different tools, because I was having so much fun listening to it.

I did notice that the CI did not pick up the squeaking of the chair that Sam was sitting in, but the HA did.

I saw the doc today about the two episodes of the room-spinning, and he said to keep an eye on it. There are so many factors involved in it, that it’s hard to determine if the CI has any effect on it. The fact that the episode only lasts less than a few seconds, and has no precursor to it, doesn’t help much along with the fact that I do not have an history of passing out.

If there was a problem with the CI, it’d be more likely that it would be of a longer duration (like after my 1st surgery). Because the eardrum looks fine, there’s no change in listening, and the CI is still working, it’s hard to say if the CI has anything to do with it.

It could be stress. It could be eating on an irregular basis. It could be lack of sleep. It could be for totally random reasons.

He did say that I may I need to get on a regular sleeping pattern for the week AND the weekend. That should help with my balance system to keep it in check. How many times have I heard that?

One thing that felt so weird during the exam was when he was pressing on the internal part. I could feel my eardrum moving back and forth. He said it was because he was increasing the pressure in the inner ear when he was pushing down on the implant.

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Now What Has Malfunctioned? (and Adventures in Sinusland) Tuesday, September 26, 2006

Part #: CI-5304-313

HR90K HP Beige Kevlar

Malfunctioning product must be returned to Advanced Bionics within 28 days of replacement product shipment or it will be invoiced.

I got this email from AB’s product team and my first thought was “WHAT? What’s malfunctioning now?” (and freaking out, because after the problem with the surgery, I figured that would be the only hiccup in the road, and it has been smooth sailing since.)

I was so confused, because I (or Mandy) haven’t talked to AB about any malfunctioning parts with my CI. I don’t know if Megan has done anything, but I’m sure she would have told one of us if she had been in contact with AB.

Needless to say, I was bewildered upon receipt of the email (and had almost marked it as spam mail, but something told me to read it). I tried to call and find out what was going on, but it’s past normal operating hours, so it will have to wait till tomorrow.

Because I have a burning desire to know instantaneously, I googled it and the closest part # I can get for that is the Auria headpiece. But there’s no mention of CI-5304-313 anywhere on the website, nor does it match with any of my other accessories.

Examining the invoice closer, I’m wondering if this “HP” is the acronym for the new Harmony Processor, which is the 120-channel processor. And with KEVLAR? Does this mean I’m going to have a bulletproof ear? (remember the mythbusters episode where they tested the stopping power bullets going through everyday objects like a deck of cards, a book, etc.?)

According to the speculation and rumors from professionals who are close to the Harmony processors, and from AB’s releases, it isn’t supposed to come out until at least November.

But if that is the case, AWESOME. And then I can pester Mandy until I get my CI to sound perfect with the music!

Unfortunately, it’s being shipped to my house instead of to me at school. Drat. *on pins and needles to find out*

Jen A. came with me to see the ear doc this afternoon (and is the first friend that has come along to anything related to the CI, so yay Jen!) Dr. D turned out to be the same doctor who said that “i think you will put on the implant and look back at digital hearing aids and wonder why you didn’t get it sooner”. It was great seeing again, as I’ve only met him once, and being able to say “look! here I am! I did it!”. I was amused because Mandy introduced me to him as “my prize student”.

Basically, Dr. D says instead of sinus problems, I could be having a problem with my jaw, leading to facial pain with swollen sinuses from allergies. Common medical thinking is facial pain+swollen sinuses = sinusitis, treated with antibiotics.

He also mentioned that my “off-balance/dizziness” can be a result of my jaw being asymmetrical (which was a problem when I had braces, and was supposed to be corrected). The dizziness just happens to be aggravated by the CI, and/or being sick, stressed, or not getting enough sleep. But overall, my scar and everything looks good.

*mind-boggle* I learn something new every day, which defies conventional thinking.

And today, we did a balloon-popping demo in class. I couldn’t hear it with the CI, but my hearing aid did.

 

being sick sucks

So, not even 2 months after having the 2nd surgery for the CI, I now have been exposed to some kind of viral flu-like sickness that has been spreading like wildfire, so I get the lovely sweats and chills. But I’m technically not “sick” since I don’t have a fever (taking my temp via mouth has NEVER worked on me).

So, the only physical symptoms I have are on the right side of my head. I have a swollen right sinus, and my eardrum is “sucked back” instead of bulging outwards from the pressure in my head. I have a headache around my ear/the front of my head/face. As for blowing your nose, you think they tell you not to do it after surgery, I now wouldn’t recommend it 2 months later.

In addition to all that loveliness, the dizziness is back…WITH the rushing/roaring noise I haven’t heard in more than a month.
Joy. I just love being sick, and being sent home from class.

Mandy and I didn’t do much today, but she narrowed down where I need to work on listening. So, P, B, G, and K, along with the vowels, is for listening practice. I do have to say I was amused when I thought the combo was “pee-yew” and didn’t want to say it out loud.

There’s nothing like a steaming cup of Tazo Passion Tea to soothe you. After that’s done, I’m off to attack my head with the Neti Pot and go to bed. Hopefully tomorrow I will be all better. The sickness needs to die.

 

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.

 

Activation Day and Pictures! Tuesday, August 8, 2006

Activation Day (Aug 7) was interesting. Dad met us at the doctor’s office, and the waiting room was the busiest I had ever seen it. My appointment was at 11:30 but we didn’t get called back until about 11:45. I noticed two people in the waiting room with ankle casts on (and I was reminded that I broke my ankle not more than a year and a half ago) so I felt their pain!

Bounced into the examining room and onto the chair, waiting for the doc to come in. Was chatting with Kim for a bit while Megan finished her lunch and the doctor was seeing another patient. Finally it was MY turn! Checked out the incision which is healing well, and looked in my ear, and I still have blood in my ear, which is normal. And then I got the magical words…“Are you ready?”

I just remember everybody (mom, dad, Dr. M, Megan, and Kim) looking at me to see what my reaction was to the news and I was like “I don’t want to! I guess I’m ready but I’m scared too!” We headed into the audiology “room” and it was a nice tight fit. They’ve had more people than that in there before, and they’ve had to stick the overflow into the sound booth.

Started off with testing the electrodes to see how they were doing, all were just fine. Then we did the testing with the beeps to see if I could hear anything. For like 20 minutes, I was sitting there just feeling it pulsing on my head, and I was starting to get the strong waves again, and I got scared. Then I started to cry because the last time was horrible with the waves. Dr. M came back to see what was going on, and they were all trying to figure out what was going on, and made some adjustments. The whole thing was just so weird and unfamiliar and I was worried that the implant wasn’t going to work because of everything that I had gone through the last time with the NRI testing and having such a strong reaction to it all.

And then the moment we had been waiting for…a real live BEEP sound! We kept going with the beeps for each electrode, till I found one that was set for my comfort level. We kept switching back and forth between the beep-testing and live speech, to see how it sounded. You know, in audiology school, they must train the audiologists to say “can you hear me now? how about now? how does it sound?” as they are fiddling with the settings, it never fails!

Megan had to turn it off to do some editing in the computer and I was talking and then all of a sudden the sound disappeared, and I was like “HEY! Where did the sound go? Bring it back!” And Kim was teasing me because at first I couldn’t hear anything and was like whatever, which soon changed into hearing stuff and then I wanted it on and was disappointed when it was off! Mom and Kim kept laughing and teasing me/Megan throughout the session. Even Dr. M was amused when he popped in now and then to see how everything was going.

When we got to a point where the speech seemed to be set, Megan and Kim decided to try and test me with words to see how they sounded. We started off with days of the week, but that was a bit difficult. We switched to the months instead, and did January-June. After listening to Megan say it several times, and thinking I had the hang of it, she tested me but without being able to read her lips. I was able to understand some of it and get it correct, so there was a bit of yay/amazement there.

The funny part was when I caught Megan saying it incorrectly, and Mom and Kim were just laughing and teasing Megan “…ooo, you got BUSTED!”. That was really cool, being able to know if somebody was saying a word incorrectly, because I was looking at her with a funny look after I heard it, and I was like “that’s not a word!” and she was a little red in the face! I’m glad I was able to provide comic relief for the office and my mom!

After everything was all programmed, Megan brought out this gigantic tote bag, and the big “shoebox” full of the accessories for my implant. We went over everything and I learned how to put it together, put it on my head, use it, and about the different parts and all the accessories. There are a lot of accessories, so it’s really cool. I can’t wait to start using some of them, but first I have to HEAR!

I left the appointment with a map that was the equivalent to a 3rd Mapping session (about ~1 month), and it was up quite high. Megan told me that I could come back tomorrow if I had to, just had to call in the morning. (they know that I’m very picky with sound and wanting to get it just right…Mandy can attest to that! 5 weeks of tinkering with the new hearing aid stretched out into 10 weeks!). The real world was much more intense than the sound booth, so I was enjoying it for awhile, and then it started to become really really painful and overwhelming.

Things I Need To Remember:
1. Kim noticed that when I get stressed (my shoulders bunch up) I stop “listening” and start thinking too much and then I can’t hear anything. When I’m calm/relaxed, I’m able to understand/hear things. This is going to be an important thing for me to remember through my audiological training.
2. INTUITION IS EVERYTHING. I need to stop “thinking” and just LISTEN to what it sounds like. The reason why I think is because with the hearing aids, I’ve had to train my brain to “fill in” the gaps with what I think the sound is. With the CI, I will be able to hear all the sounds, but I need to let my head put it together automatically without thinking. No more guessing…I just have to say what I heard back, not go “i think it sounded like…”

 

Dad, me, and Mom waiting for the doctor to come in and give me a checkup and his “OK” for activation.

 

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Cochlear Implant Surgery #2 Diary and Photos Wednesday, July 26, 2006

Here are the pictures and the diary of my experience from Cochlear Implant Surgery #2, that I’ve been promising to post for awhile!

Link to Surgery #1 diary and pictures (July 10-12)

 

In the car on the way to the hospital for cochlear implant surgery number 2!

Tuesday afternoon, the results of the NRI test and CT scan determined that I needed to have surgery again to fix a minor complication with my implant (easily corrected). I am the first patient EVER in all of his years of practice to have this problem. He’s heard of it, but he’s never seen it happen, so it was kinda cool being a doctor’s first case. He definitely won’t forget me!

However, I felt bad because everybody at the office was waiting for us to come back from the CT scan till after closing hours, because they needed to see the results on whether or not surgery was needed, which I wouldn’t find out until the next morning when Myrna, the secretary/coordinator, came in.

Wednesday morning, 10 minutes after they opened at 8:30, everything was in place and all set to go. I was going to have surgery at 5:30 pm on Wednesday afternoon, same hospital as my first surgery.

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First Activation of the CI – PICTURES! Tuesday, July 18, 2006

I’ve got an interesting story to tell you about me and my CI! I went in today to do some follow-up testing on my implant, since they had trouble with it (a possible false positive) in the operating room. I had to go in to make sure that my implant was working correctly after surgery because they couldn’t rely on the first results from the surgery.

This was the first time my implant had been turned on. I wasn’t sure what to expect, and the expression says it all! They were doing something called an NRI test, which is what they do during surgery, not afterwards. And I still have my black eye!

 

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