The Bionic Sound Project

this girl’s journey to sound

It Doesn’t Change How I Like It…LOUD Thursday, February 1, 2007

After a few months of avoiding music because my brain was tired, graduating to playing at low volume, then listening to it through headphones, I finally realized something tonight.

No matter how deaf I am, if I have a cochlear implant or not, I’m always going to like my music loud.

Unfortunately, this doesn’t bode well for the poor souls that are within a five-mile radius of me, whether on the road or at home.

There is nothing like the feel of the bass pulsing through your body. The vibrations cascading down your back. The ripples of the sound as it skips around your ears, giving you a pleasant rush, leading you to the crescending high. Music is my drug. It’s an addiction that I can shake, but only for so long.

I just have to blast it, drench myself in sound. I have to feel it through every inch of my body. And tonight, I had the feeling of being reborn through the songs.

“4 My People (Basement Jaxx Remix Radio Edit)” – Missy Elliott
“Lazy (Original Mix) [feat. David Byrne]” – X-Press 2
“Young, Fresh N’ New (Timo Maas Remix)” – Kelis
“It’s Gonna Be…(A Lovely Day) [Bini&Martini Club Remix]” – Brancaccio&Aisher
“Shifter (Full Vocal Mix) [feat. MC Chickaboo]” – Timo Maas
“Salsoul Nugget (If You Wanna) [Extended Vocal Mix]” – Girl Next Door
“Groovejet (If This Ain’t Love, Then Why Does It Feel So Good) [Extended Vocal Mix]” – Spiller
“What A Girl Wants (Thunderpuss Dirty Club Mix)” – Christina Aguilera
“Freakin’ You” – Jungle Brothers
“Rendez-Vu” – Basement Jaxx
“Blue Skies (Deep Dish Blue Phunk Mix) [feat. Tori Amos]” – bt
“Lapdance (Paul Oakenfold Swordfish Mix)” – N.E.R.D.

The cochlear implant won’t change how I like my music. It does give me the ability to hear it when it’s faint, but it doesn’t have the same energy and intensity for me. I cannot deny who I am.

So! In the words of Nintendo’s Game Boy Campaign from the 1990s…“Play It Loud”. Rock on! \m/

And for the eardrums everywhere who hoped that the CI would make things quieter…I’m so very sorry.

p.s. If you’re familiar with any of those songs, and can think of more that I might enjoy, please share!

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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.

 

I now officially love my cochlear implant. Today’s Adventures In Sound! Wednesday, August 9, 2006

As of 9:22 pm Mountain Standard Time, I now officially LOVE my cochlear implant.

I’ve had it on for almost all day, except for about an hour where I took it off to let my scalp rest for a little bit. The “pulsing/shocking feeling” that I had been complaining about in my last entry doesn’t bother me as much anymore, and is almost at the point of being non-existent. Instead it has been replaced with a “crackling” sound. I think Program 1 is my favorite, and I’ve got it turned up all the way to max, because I’ve outgrown the limits already.

Tomorrow I meet with Megan again to do my 3rd Mapping session in 4 days! And Susan (the speech therapist) emailed me today, and I am now going in for a post-activation evaluation and starting therapy next week because I can do it now.

This morning I came downstairs to get some juice. I pulled the glass out of the cupboard and set it down gently on the granite counter, and I could distinctly hear it go “clink”. Mom was happy, because that means I will stop banging her poor dishes onto the counter!

After that, I ventured out to the public library and got some audio books and CDs to practice listening with. After that, I came home and listened to music all day. When I first started listening to the music (I got tired of NPR for today), I swear that everything sounds like TECHNO! At one point I heard this noise that was different from the music, and realized it was the phone ringing, and right after that, I heard the clock started chiming at the hour! And then there was the clacking of the keyboard keys and the clicking of the mouse buttons. That was VERY exciting.

Throughout the day, I kept telling Jen that the song that just came on sounded like 2 Unlimited’s “Get Ready 4 This”, and that I was positive it was the song. (wrong on all counts!) I finally gave up because I was starting to be able to tell the differences between songs. I also tried to listen to Harry Potter and the Chamber of Secrets, but I was having a hard time hearing the words, because I need more clarity/definition in sound. I was also holding Benny today, and he was complaining (quietly) and I was able to hear the quiet meows as compared to yesterday’s loud meows.

When Mom came home from work, I told her about thinking that every song was sounding like the beginning of “Get Ready 4 This”. She wasn’t sure which song I was talking about, so I attempted to imitate the beat and tone that it sounds like. And then I put the song on for her, and she was surprised, because my imitation was very close! I’ve never been able to do that. I think this will help me tremendously with my piano playing and any other instrument that I decide to play.

While we were talking and eating dinner, I heard this sound coming from the other room. I asked mom, what’s that sound? She wasn’t sure, so I was tapping in rhythm with the sound, and it turns out it was the dog drinking water from her bowl! I couldn’t hear that with my hearing aids either! *lap lap lap lap lap* Mom looked so happy and like she was about to cry!

I’m listening to music again, with my favorite songs (250+) on shuffle. I was able to get 3 out of 5 random songs (in a row) correctly identified by artist and title! Some of the songs I was able to identify by the words (Jimmy Buffett’s “Apocalypso”)! Others I was able to identify by the beat and some of the melodies that I can hear. I was a little disappointed when I couldn’t recognize Groove Armada’s “But I Feel Good (Audio Bullys Dr. Feelgood Mix)” (mp3) because that’s one of my most favorite songs.

My other favorite sound discovery for today is the sound that toilet paper makes when you wipe yourself. I didn’t know the paper rustled that much!

Other than that, Jen is in trouble with me because she is on a mission to collect and find magnets that will stick to my head. She’s obsessed with the thoughts of magnets (other than my CI magnet) having the potential to stick to my head. ^.^ I didn’t even think about that till she brought it up! :-p

I’m amused and grateful that my friends are taking such an interest in this whole thing. Not only that, they are willing to help me in whatever way they can. I can’t even REMEMBER the last time that I’ve had hearing friends actually take the initiative to learn more about it on their own, without me having to explain it all to them.

And I got the best email from Dad today about this whole thing, which made me cry. Dad, I love you very much and thank you for what you said.

It wasn’t till 10:09 pm that I finally identified “Get Ready 4 This” correctly! I knew it as soon as it came on!

The Discovered Sounds List
Aug 7, 06 – Mom + Dad’s Voice
Aug 8, 06 – Benny’s (cat) Loud Mrrreeow/”talking”
Aug 9, 06 – Glass Clinking On Counter
Aug 9, 06 – Clock Chiming at Hour in Office
Aug 9, 06 – Phone Ringing
Aug 9, 06 – Keyboard clacking/Mouse clicking
Aug 9, 06 – Elizabeth lapping water in her bowl (from the other room!)
Aug 9, 06 – Hearing myself whistle
Aug 9, 06 – Starting to recognize some favorite songs
Aug 9, 06 – The sound toilet paper makes when you wipe yourself

Songs That I Recognized Today (When I First Started Making The List)
* the first 3 were out of 5 in a row
* All-4-One – “The Bomb”
* Green Day – “Burnout”
* Everclear – “I Will Buy You A New Life” (words)
Jimmy Buffett – “Apocalypso” (words)
S Club 7 – “It’s A Feel Good Thing”
Rage Against The Machine – “Bulls On Parade” (the trigger point for me loving the CI due to the intricacies in some of the notes)
Bowling For Soup – “The Bitch Song”
Van Halen – “Jump”
Sublime – “What I Got”
The Bloodhound Gang – “I Hope You Die”
Vengaboys – “We Like To Party”
Rick Astley – “Never Gonna Give You Up”
Cherry Poppin’ Daddies – “Zoot Suit Riot” (words)
KC And The Sunshine Band – “Get Down Tonight”
The Prodigy – “Firestarter”
Smashmouth – “All Star”
Lenny Kravitz – “Black Velveteen”
Queens Of The Stone Age – “Feel Good Hit Of The Summer”
Boz Scaggs – “Love Me Tomorrow”
Foo Fighters – “Everlong”
*NSYNC – “Bye Bye Bye”
Vitamin C – “The Itch”
The Refreshments – “Down Together”
Jewel – “Who Will Save Your Soul?” (words)
Lou Bega – “Mambo No. 5 (A Little Bit Of…)

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

First Night Post-Activation

I woke up at 5:50 this morning. For the first time since I had my first surgery, I was able to sleep through the entire night without having to get up to go to the bathroom, being awakened by the cat who decides that 3 am is a good time for a snack or to be petted, or for any other reason.

My first night was interesting from a post-activation standpoint, because even with the magnet off, instead of hearing the “jet plane noise” that I’ve heard for the last month, I could have sworn it sounded like a radio was playing inside my right ear, but I couldn’t understand it. It was like I could hear speech, static, more speech, changing-station sound, static, more speech.

Ha, I wonder if I’m getting a reception from the radio towers that are up on the mountain by my house. That would be funny. I could just tune in with my head, and scan stations.

I tried to put my implant on this morning, and it was dead. The magnet attached itself to the lamp, so I guess it was on. I need to unplug the battery so it doesn’t drain whenever I’m not wearing it. But I put a new battery on, and I got shocked again, so that was not good.

As soon as it’s 8:30 (in 19 minutes) I am going to call Megan and take her up on going in today. I want to fix it up so it doesn’t hurt my head so much. There’s no point in having an implant that I can’t wear because it hurts. The whole point of the implant is to have it on and have myself get used to it and learn to “hear” and interpret this stimulation of the nerve in order to understand it. Not wearing it is not going to help me get any closer to my goal.

All the electrodes work but #15, we turned it off (I don’t remember why…think because I couldn’t hear it and it was maxed out or no response).

 

The Post-Activation Entry Monday, August 7, 2006

4:54 PM: I want to cry, yet at the same time I’m happy, but right now I’m extremely frustrated.

What sucks the most is that my mom’s voice (one of my favorite familiar sounds) is driving me absolutely insane, and I wish she would just shut up because it’s giving me a headache and it really hurts my head because I’m getting shocked constantly. Her entire life with me, she’s always had to talk loudly so I could hear her. I’ve been trying to train her this summer to not yell/talk loudly, because with my new hearing aid, it’s not necessary to talk as loud. And now with the cochlear implant, it’s not just the volume of her voice, it’s also the way it sounds. Anyway, we got into a fight over different things/miscommunication because I was taking my frustration out on her, and finally told her (not very nicely) that “I didn’t want to listen to her anymore because she was hurting my head”. Needless to say, that got her really upset, only to later end up with both of us crying together, talking it out, and getting over it.

I’m upset because all I hear is static static static unless somebody real close to me is talking. I absolutely *HATE* putting the implant on because it really shocks me as soon as the magnet hits the internal part, and the whole thing SUCKS. I hate feeling the pulsing feeling on my head. It tends to come and go, but it was intense at times, especially with the loudness. I turned it down all the way, and I’m still having shocking.

But the good news is that for somebody whose audiologists and doctor didn’t expect to be hearing human speech on the first day, much less within an hour of hookup, I can hear SOME of it. And I got some words correctly without using lipreading. But I definitely have a loooooooooong way to go.

But my problem with the words is that I’m missing definition. It’s like it’s either hollow, muffled, or the tops/bottoms/beginning parts of the words are missing. And it’s like I’m hearing the very core of it, but not the rest of it to have any identifying details.

I’m just frustrated between the static, the pulsing, and the shocking of my head, and the sound of sounds, plus the missing information, and I’m just thinking….this is going to majorly SUCK for awhile. And I just want to cry right now…out of frustration, tiredness, and pain.

The good news is that Megan said I could come back tomorrow, Wednesday, or Thursday to play around with my implant some more, instead of waiting till the 15th. I will also get three processing programs then as compared to one, so maybe that will help with the sound sounding like !&#$.

—————————————————————————————–

*sigh* It’s almost 2 hours after I’ve left the office (~3 pm) that I’ve gone into full-blown sobs and tears. It’s the cumulation of too many emotions….happiness/sadness, frustration/excitement, hope/disappointment, all competing with each other. It has been a month…if not more than that, of anticipation and waiting. Of having surgery twice and bottling up my emotions due to my reactions to everything that has happened since then. And eventually I had to crack. Today’s events just happened to be the trigger point.

My poor cat Benny was practically being drowned in my tears. He was getting covered in everything that was running off of my face, and he just had a bath yesterday. I was hugging him as I was crying, so unfortunately, his fur was absorbing all the wetness.

One of my fatal flaws is that I set my standards so high. I need to learn that it’s not always a contest, and you don’t have to be the best. And this applies to the whole post-activation process. I leave today with the knowledge that I am hearing words without lipreading within 2 hours of being activated, and if I can do that, this is only a sign of things to come. That’s pretty good.

One baby step at a time…it’s not going to happen all at once. Dad was trying to remind me of that fact today during the activation.

Now I feel better, but boy do my eyes, face, and sinuses hurt. I don’t even remember the last time I cried like this…I think it was 2004, but I am not a crier, and rarely cry. This has been one intense day.