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.

 

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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CI Update

A little scared right now regarding the CI…here’s the full story.

Plans changed for the follow-up testing. Got a phone call this morning asking us to come in today instead of tomorrow. We got ready in record time and headed down to the doc’s and got started a half hour early.

Got my implant turned on for a little bit. But most of the 2.5 hours were dedicated to the NRI (neural response imaging) test (which they do right after surgery, but due to electrical interference in the operating room, needed to redo to make sure implant’s actually working). They usually don’t do this after surgery (from my understanding), so it was an interesting experience for them to do it with a conscious and responsive patient.

Apparently, I still have air bubbles in my cochlea which is affecting the electrodes and their operation. During the NRI and conditioning tests, the air bubbles kept moving from electrode to electrode. It was driving Kim, the other audiologist, crazy because the results kept changing.

Then it was turned on for live speech, and oh my g*d, I literally almost fell out of my chair because of the waves in my head. I couldn’t hear anything, but I was getting some kind of stimulation from the implant. It is really hard to explain “waves in my head” – * but it was strong and powerful enough to make me extremely dizzy to the point where stimulation was physically having an impact on my head. It was affecting my balance and vision, but I couldn’t hear anything. I was hanging onto the chair, the wall, whatever I could get my hands wrapped around on and hold on for dear life. That was real scary and painful for me.

At one point Kim was really concerned about me and was asking me if I was scared, because I wasn’t responding to my mom or to her. I wasn’t scared, but the expression on my face said otherwise. I was concentrating really hard, trying to hear her voice, and she was talking louder and louder, without me hearing anything.

My doctor is being ultra-conservative/cautious, and has sent me for another CT scan this afternoon to check and make sure my implant hasn’t worked its way out of the cochlea, or poked through, and that is the reason why I can’t hear, but still get the stimulation.

So here I am, sitting in the waiting room, to get another CT of my head. I hope to g*d that the implant is just fine, and that we don’t have to go in and replace it. Apparently, there was a bad batch going around a few months ago, and the chances of getting a bad implant is around 1%. He told me he was in surgery earlier today, and he opened up the package, and the electrodes were marred, making it un-implantable, so he had to re-implant that person. We don’t think I have a bad implant, because the electrodes are responding, but it may be that I’m just super-sensitive, and that we may need to take it slow with me. It’s not uncommon for implants to slightly come out of the cochlea, especially in young children.

I would not be surprised if that was the case with the implant moving, due to the “extreme” case of vomiting that I had after surgery. I know I’ve always been a sensitive person, and have had unusual responses to different things. Hey, I’m special. 😛

I am 100% behind my doctor, and I really don’t think I will have to do surgery again, but I am concerned that the implant may have moved post-surgically, due to the violent, prolonged vomiting that I had in the hospital. If I had/have to do it all over again, I would, and with the same doctor. He is excellent, one of the best in the state, if not the entire country. And I do have my own set of medical problems/history/unusual reactions to things. I have complete faith in my doctor, and in no way do I want this entry to be interpreted as such.

Other interesting tidbits about my CI that I learned today
– Kim said that it was the smallest amount of hair that my doctor has ever shaved off on a CI patient. He usually likes to shave off more than that. She was telling me the story about when she was in the OR with him, and he had finished shaving my head, and she asked him “is that all you’re taking off?” He responded “I promised that I would only take a little off.” So she told me that that I was a lucky patient since that is not his personality when it comes to surgery and implantation. So 😀 for no big bald spots!

– The hollow space between my eardrum and cochlea is filled with dried blood. I won’t be able to see if my hearing aid works in that ear for residual hearing yet (CI surgery is supposed to completely and permanently destroy any and all hearing in that ear). In about 6 weeks, I should be able to hear or get some low-frequency residual hearing back, because my doctor is certain that I still have it there. I just have to heal up my cochlea and get the gunk reasorbed into my body.

Pictures later. It’s time for my CT scan in a few minutes. And then immediately back to the doctor’s to go over the CT scan and decide our next step. Who knows, I could be back in the hospital again this week. :-/ Apparently it is easier the second time around, thank goodness. I don’t think I could take another round of vomiting like before.

* – edit: waves in head = like being caught underneath a wave at the ocean, and being thrown all about, and not knowing which way is up or down

 

It’s Been Done – Surgery! Thursday, July 13, 2006

I had my cochlear implant on Monday, July 10th. I’m fine, but I had a really rough time with it, and ended up staying in the hospital for almost 2 and a half days. I’m at home now, and I’m doing okay, but not that great. I’m making this entry very short and will update more later.

My surgery was around 7 am, and I didn’t get moved up to a hospital bed until around 2 pm, I believe. I was very sick and having a lot of trouble with post-anesthesia issues.

Here are some pictures from my experience (on Surgery Day and the two days afterwards)

 

My Dad and I at Good Sam around 4:50 am

 

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Pre-Surgical Appointment Thursday, July 6, 2006

Today was the pre-surgical appointment. My dad is starting to take an interest in this whole CI process, and came along to this appointment. My stepmom couldn’t go because of work, but I would have loved to have had her there and involved with this. My mom came along as well, and it’s just amazing how well she’s moving around after having major back surgery.

At my first appointment with my doctor, he learned where I go to school, and mentioned that there was another girl from my school who was also getting a CI. I had a feeling I knew who, but due to the laws, he couldn’t tell me (and he couldn’t remember). Through talking to a mutual friend of ours (who also has a CI) about some CI stuff, he mentioned her to me, so I sent her an IM tonight and we chatted. It’s funny, because she was one of my old residents on my floor when I was an Resident Advisor, and we lost touch. Now we are going to compare notes and post-surgical procedures. I thought it was kind of weird, because he was trying to schedule us both for the same day.

In short, I am just pleased that my dad is starting to take an interest in this stuff, because it means a lot to me. And the transportation issues have been worked out, because my mom can’t drive yet, and I won’t be able to drive us home the next day. So my dad is going to drive us to the hospital, and then bring us home the next day.

Today, I had to get two vaccines: pneumococcal polysaccharide and Hib. Personally, I would rather get a shot than have blood drawn, because my left arm hurts sooooooo much. After today, getting blood drawn seems to be the better of the two evils.

Right now, the only thing keeping me from surgery is the hematologist’s clearance. I had my blood tested last Friday, so hopefully everything checks out. My doctor just doesn’t want me to start having issues with bleeding in surgery, or having bleeding into my head after the procedure. But other than that, I’m pretty much all set to go.

And before anybody asks if I’m nervous, I’m not. I’m just…neutral. At this point, I really don’t want to talk about it anymore. Course, I’ll probably freak out on Monday.

On an unrelated note, my sidekick-phone is being a pain in the butt. It keeps dying and restarting on me. Hopefully after the surgery I will be able to get a new phone and maybe even LISTEN on it!