The Bionic Sound Project

this girl’s journey to sound

Ear Thermometers And Cochlear Implants Saturday, December 30, 2006

Met with Susan on Wednesday. I’m averaging between 60-80% on the categories. I do better with sentences than words…go figure. Got quite a kick out of coming up with words for the New Year’s category.

The other thing that was interesting was that using the ear thermometer in my CI ear reduced the temperature by two degrees.

So, the temperature in my right ear reads at 98.3, whereas my left ear (non-CI ear) reads at 100.6.

Yay for being sick. I’ve effectively lost my voice as well, so I’m incommunicado for the moment. It’s just as well, since all the adults are sick, after the germ-bombs were sick all at the same time.

Time to rest some more.

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My Favorite Martian, and the MAUDE database Sunday, November 5, 2006

Last night, I had my first true case of vertigo since surgery #2. The dizziness last night was similar to the dizziness that occured in the 9 days between surgeries #1 and #2.

I was sitting in the chair next to my computer, listening to music and flipping through CDs, when I felt the implant “seize up”. It was odd, as I hadn’t worn the CI all day, so I don’t know why it felt like there was stimulation. Then I felt something that I can only describe as a spark of pain that shot through my head. I looked up, but the room was spinning to the left, and I nearly fell out of the chair, but grabbed onto the desk just in time. Immediately after that, I felt like I was going to throw up, so I just laid down for an hour, to settle my stomach and nerves, and to try to get the implant to stop “twitching”. I felt pressure on the the right side of my head, specifically the sides of my forehead and lower jaw, as if somebody was pressing very hard with their finger into the bone, giving me a headache. It was scary to experience something I haven’t experienced in 3.5 months. I had hoped and thought that I would never have to experience that again with the CI, as that problem had been resolved with the 2nd surgery.

I called my mom to tell her what happened, and the first thing she does is to start laughing. Apparently, the whole incident reminded her of the 1960s TV show “My Favorite Martian”. She said that maybe my favorite martian was talking to me, and delivering electrical impulses. She thinks I probably got zapped by something, and to not worry about it. She apologized for laughing, but the way I was telling her about it, sure reminded her of an episode, and I was laughing at her, because it was so random. She told me to look up other shows from the 60s of that same nature such as My Favorite Martian, My Mother The Car, Mr. Ed, Car 54, Where Are You?, etc.. We are goofy like that.

Anyway, I was searching to see if similar events had happened to other CI users before, when I was reminded of the MAUDE database while searching.

The FDA has a database called the Manufacturer And User Facility Device Experience (MAUDE), in which they keep track of things that have gone wrong with medical devices. I stumbled upon this database back in July, when I was searching to find out more about what happened with my cochlear implant surgery. The database is only updated quarterly, and it was just updated so my case is now in there.

Adverse Event Report

ADVANCED BIONICS CORPORATION HIRES 90K COCHLEAR IMPLANT

Model Number CI-1400-01
Event Date 07/19/2006
Event Type Injury
Patient Outcome Required Intervention;
Event Description

A ct scan revealed that the electrode array was in the semicircular canals. On july 19, 2006, the patient had revision surgery to reposition the array. The device remains implanted.

Brand Name HIRES 90K
Type of Device COCHLEAR IMPLANT
Manufacturer (Section F)
ADVANCED BIONICS CORPORATION
12740 san fernando rd
sylmar CA 91342
Manufacturer (Section D)
ADVANCED BIONICS CORPORATION
12740 san fernando rd
sylmar CA 91342
Manufacturer Contact
joann rizzi, specialist
12740 san fernando road
sylmar , CA 91342
(661) 362 -4652
Device Event Key 735215
MDR Report Key 747434
Event Key 712299
Report Number 2029203-2006-00527
Device Sequence Number 1
Product Code MCM
Report Source Manufacturer
Source Type Health Professional
Reporter Occupation Audiologist
Type of Report Initial
Report Date 08/14/2006
1 Device Was Involved in the Event
1 Patient Was Involved in the Event
Date FDA Received 08/14/2006
Is This An Adverse Event Report? Yes
Is This A Product Problem Report? No
Device Operator Lay User/Patient
Device EXPIRATION Date 06/30/2006
Device MODEL Number CI-1400-01
Was Device Available For Evaluation? No
Is The Reporter A Health Professional? Yes
Was the Report Sent to FDA? No
Date Manufacturer Received 07/19/2006
Was Device Evaluated By Manufacturer? Device Not Returned To Manufacturer
Date Device Manufactured 06/01/2006
Is The Device Single Use? Yes
Is this a Reprocessed and Reused Single-Use Device? No
Is the Device an Implant? Yes
Is this an Explanted Device? Yes
Type of Device Usage Initial

Database last updated on September 29, 2006

And I couldn’t find an answer to my question, plus my friend Matt had come over to check on me to make sure I was okay because I was talking to him and Krista when it happened. I will have to wait till Monday when I see Mandy.

But I’ve got a new headache and some dizziness (not like last night’s) again tonight. I haven’t worn the CI since I took it off at 2 am Saturday morning. This is not fun.

 

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.

 

Happy Autumn! Sunday, September 24, 2006

Yesterday was the first day of Fall. I’m not an Autumn person, preferring Spring and Summer. But I am excited for it this year because of the plethora of new sounds it will bring for me to go in search of.

Leaves falling off trees, crunching through the dead leaves on the ground, the sound of biting into crisp apples, the spooky sounds of Halloween, the squeals of kids going trick-or-treating, pumpkin carving, candles flickering inside, corn rustling as you go through a maze, I have no idea what else Fall sounds like and am eagerly curious.

Next weekend I am going apple picking for the first time ever, and participating in some of the Fall traditions that we don’t have back home, in the desert. I’m very excited.

My goal for the month of October is to watch as many scary movies as I can, and see if I get more scared watching it with the CI. I already discovered that the X-Files sounds much creepier and moody back in August, so now I wonder if the same holds for scary movies. I don’t get scared by scary movies, just psychological thrillers.

Friday, I didn’t get to work with Mandy, so I played with S&B while waiting for her to arrive due to being delayed. 😦 I’ve now done every category in the program, and established where I need to work with each category.

Then, I went with my friends out to Target. While walking to the car, and listening to my friends talk, the only thing I understood was Stef saying “I don’t know.” Then, at Target, while showing Everett the new Halloween Jones Soda flavors, I answered a question he asked me. He said to me “Do you realize you just answered my question without looking at me?”

So yeah, that was kinda cool. But I still feel like I don’t understand a lot of stuff clearly or without some sort of visual clue. Patience is the key.

While talking to my mom, she said that she “thinks that you’re being too hard on yourself, but why am I not surprised? I’m so proud of you for all the hard work you’re putting into it, and I know it’s not easy on top of everything else.”

I spent most of the weekend without the CI, just because I didn’t want to deal with it, and now I’ve been felled by the sickness that’s been going around like wildfire on PHouse/in class.

 

Surpassing the 2-month mark, 1st day of Listening Therapy Monday, September 11, 2006

Yesterday marked the 2-month point since I got implanted. Some things have changed, and some things feel the same. I still feel as deaf as before, even though I’m hearing more sounds.

Felt dizzy for part of the morning, which progressed into a headache, (but after an hour of talking about quantum theory, blackbodies, and theories of waves/light at 8 am, you would get one too), which resulted in the suppression of the gag reflex, not fun.

I keep forgetting that I can’t move fast, and simple things like taking 3 flights of stairs, seeing things move rapidly, or going over a speed bump can trigger bouts of dizziness. Maybe it is a sign that I need to slow down once and for all.

As for my big lecture class, Mandy suggested getting an FM system (oh how times have changed from my stubborn resistance of the elementary school years). After last week’s “noisy” class, I’m more open to the concept. She did some research into the auditorium that I have class in, and unfortunately, it isn’t wired for it (the others on campus are), so I have to meet with the Dean of my college to get that started (it’s under their responsibility). I hate asking my teacher to wear another mic, since she already is wearing one for the hearing kids, or for anything else.

Mandy started actual therapy today, and boy was it different than testing, which was easy for me. We did categories of words in ABC order, and some of those animals we had never heard of before, such as Ibix, Numbat, Quokka, and we were like “WHAT?!?!?!”. Several I had trouble with because speech has been sounding funny to me lately, especially over the weekend. I was getting really frustrated on some of the sentences, because it sounded nothing like what I thought it would, or only got parts of it. And when you start having trouble with basic words that were easy before, that’s not good.

Mandy’s also started coming down on my speech errors, so one word I repeated wrong today didn’t come out the way it was supposed to, and sounded like a gross slang word that rhymes with Chart. Oy. At least she’s awesome about it lol. I know I get lazy with speech sometimes, I can say it, but I don’t always do so, resulting in embarrassing situations, or situations that were made worse (a.k.a. “what a big plane” incident).

By the end of the week, I will have a new/adjusted MAP. Catherine’s going to sit in for the first session. My homework (from what Megan told Mandy about our past sessions) is that I need to figure out which of the three I like the best and why, and come prepared with information. Each one has its own positives and negatives, so it’s hard for me to make comparisons, especially since it seems to change over time!

I’ve been asked to be involved in an upcoming project, but mum’s the word till I find out more/it actually happens.

Poetry class, my teacher was pleased with my poem. I actually ended up having to read both poems, and explain why I wrote/picked the one that I did. I scrapped the first one (which was a modification of a poem pre-CI), and kept the brand new second one (post-CI), and she wanted to know why. I tried my best to explain briefly that I cannot write poetry based on sound that I knew with my hearing aid, versus sound that I now hear with my CI. It’s a whole new dynamic, that allows greater material for creativity. Why write about the exterior shell, when there’s a whole new smorgasbord of details? I find it hard to explain how it’s different, but she understood immediately.

I was in the darkroom tonight developing with Sam, and I could hear the ratchet-ratchet as she wound her film onto the developing roll. I could hear the different noises that the tools made, clattering against the counter, all in total darkness and not having any visual clues. I felt like I was watching her work, but only through my hearing.

While she developed our film, I helped another classmate, Jen A., by modeling for her project. Matt W. saw us and came over to say hi. The three of us sprawled out in the grass, soaking up the last of the sunshine, as we discussed the upcoming projects for the week for class. Conversation turned to CIs, and since I’ve been back to school, I’ve loved the reactions that people have (especially hearing people with no prior knowledge about CIs).

But that’s a story for another day.

 

Stressing about Monday Saturday, August 5, 2006

So the last few days I’ve been feeling icky. At first I thought I had an upset stomach due to going out to eat the other day, but that wasn’t it. My stomach is just in knots and all tight and achy.

Today Mom asked me if I was still feeling sick, and then asked if I was stressed about Monday. Hmm…maybe that’s why I feel sick…because I am nervous about Monday. I really need to learn how to manage stress and anxiety.

I don’t know what to expect. I kind of wish I could get it over with, but all the anticipation and buildup towards the activation is kind of exciting. But at the same time, no longer will I be able to wonder and dream about what it will sound like, because I will KNOW and have it on my head and using it.

It’s a conundrum.