The Bionic Sound Project

this girl’s journey to sound

Harmony Info and Hearing Things That Hearing People Don’t Notice Monday, December 4, 2006

Today was the first day of the quarter. I did errands and had a therapy session with Mandy. First I stopped to see Karen about scheduling speech therapy for this quarter, but to no avail. Mandy’s going to be playing speech therapist AND audiologist.

While working out my schedule in Karen’s office, she was typing away at the computer, eating a cracker, and I heard something which sounded like somebody hammering in the distance.

“Karen, do you hear that noise? It sounds like somebody hammering.”

“No, I don’t, I am eating crackers though. That may be what you’re hearing.”

“No, that’s not it, there definitely is a noise that sounds like faint hammering.”

So she stops everything she was doing, and listens for a few seconds.

“I still don’t hear anything.” and after she said that, she leaned down and picked up her bag that was pressing against the buttons of the tape recorder on the floor, making the “hammering” noises that I was hearing.

“There is absolutely NO way that you could have heard that.”

“Yeah, I did hear it. It sounds like ‘thnk-thnk-thnk-thnk’.”

“That is so incredible. It’s just unbelievable what you are hearing. I don’t even know how many decibels that was, but I couldn’t even hear it myself, and it took me a few seconds to figure out what it was! It’s a low, low, low frequency sound, almost silent, and to pick that up, wow!”

So, I went over to see Mandy since it was time for my appointment with her, and Karen told Mandy what happened with my sound discovery, so both of them looked pleased.

I’m going to be seeing Mandy 2x a week for auditory practice, and not seeing Karen for speech therapy, because of all the schedule problems from last quarter, and my final class schedule wasn’t definite until today, and everything’s booked. As a result, I’ve decided to fly solo this quarter without an interpreter for my major class. My teacher does know some sign, and has experience teaching all-deaf classes, and is willing to work with me in his class without an interpreter. It’s scary, but I’m up for the challenge. I just hope I don’t fail, because it is a 5-credit hour class out of 12 credits.

Mandy got back from the audiology conference that was in Buffalo this weekend, and true to her word, she showed me all the stuff she got at the conference, that had to do with the Harmony.

If I thought Megan and Dr. M were excited about the Harmony and what I am going to think of it, Mandy is way more excited about it than they are, and myself. She wants to get started with the Harmony…NOW. Hehe.

So far I’m the only active patient of hers that is going to be getting the Harmony (especially in January) and what I had to hear about the Harmony was pretty interesting.

Among some of the features of the Harmony:

– Built-in programmable LED light that will give system status for different things. It will be like the Firefly for the Auria, but most operations will be programmed to either light up for a short time, or permanently be on during operation.

– programming with the Harmony will be similar to programming with the Auria, but it will be one-click. It will convert the MAPs from HiRes 90 to HiRes 120 with a single click of the button. When I go in with the new Harmony, all it has to do is get my MAP from the Auria, and convert it with the click of the button.

– Users with the Platinum Sound Processor will be able to use the HiRes 120 processing strategy. This is a great way to determine if they like the strategy enough to upgrade and switch to the Harmony. With the Auria, there is no way to test out the HiRes 120 to see if you like it, except for getting the Harmony.

I’m really happy I got my cochlear implant in July, because I will automatically get to start with the Harmony and HiRes 120 processing immediately. I don’t have to wait several months to take advantage of the HiRes 120 Fidelity, as it will be much stronger and powerful than the Auria.

The patients who are getting implanted in January and beyond will not be able to take advantage of the Harmony’s benefits immediately. Apparently, the FDA is recommending that all new patients start off with the HiRes 90 processing/programming strategies (which is the Auria’s capabilities), then switch to the Harmony’s HiRes 120 capabilities 3 to 6 months after activation.

Now that I know what my Auria can do, and sound for the most part is normal, I’m ready to take on the Harmony and reach the next level with my hearing!

 

The Airport Announcements Sunday, December 3, 2006

Saturday, I flew back to school. I had a nearly 2.5 hour layover in Cleveland, Ohio. While waiting at the gate, I was approached by a deaf young man, John T., who also goes to school with me. Felt like I had seen him before, but we found out we had some mutual friends in common, and figured that’s how we probably met. Gotta love the deaf community.

Anyway, the gate I was at, had multiple planes at it (the kind where you have to walk down the stairs and out onto the tarmac). This lead to staggered boarding, as they were boarding the multiple cities at different times.

What I was so excited about was while I was engaged in a conversation in sign, I heard them saying word-for-word over the PA, “we are now boarding for Rochester, New York” and I said to my new friend, “that’s us!”

It was so weird to be able to be engaged in conversation in a noisy airport, and hear the announcement word for word in the background. And at the same time, absolutely THRILLING to be able to understand it with the cochlear implant.

Flying was much better this time around, but my ear still doesn’t like the pressure on it. But I didn’t feel dizzy/off-balance after getting off the plane, and going through the security pat-down was quick, compared to last time I flew out of Phoenix.

I forgot to mention in yesterday’s entry that Megan has been listening to Christina Aguilera way more than I have, and every time she hears her music, she thinks of me. I infect people with the Christina goodness!

My focus since I’ve been activated was to listen to a diversity of music, mostly my favorite songs, to retrain my brain to associate that pulse with that sound. Now that I’ve trained my ears with different music and it is starting to sound natural, I may start listening to Christina’s new stuff more.

I think I didn’t want to corrupt her beautiful voice with the CI until I could get a sense of normalcy with music.

Megan also said that music will be so much better with the Harmony, and both she and Dr. M can’t wait to see what I think of it as compared to the Auria, since I’m a music fanatic.

I also learned that I have to wait for a letter from Advanced Bionics, that will explain about how to get the Harmony, then I have to call and order it, then bring it in to program it. Just a month to two months to go!

A lot of people are getting implanted in January, because they want to get two Harmony processors. I’m glad I got implanted when I did, because I want to enjoy the Harmony when it’s turned on, now that I’m doing reasonably well with the Auria.

Ok, 6:35 am, and I should go do something productive before heading out to the Toy Fair and sushi with my friends! A new sound adventure awaits, and this time it’s one of my favorite things…TOYS!

 

My First Day Back At Work Monday, November 20, 2006

Today was my first day back at work since May. I was supposed to work this summer, but due to complications with the cochlear implant surgery, I wasn’t able to return to work in time before school started again. It was also my first time back as a cashier in what seems like more than a year. Next week, I’m back on salesfloor, which makes me happy, since I am the kind of person who likes to keep moving on their feet, running all over the store.

I’m pooped, and I’m not sure which one is more tired, my body or my ears.

It was absolutely noisy, even with today’s start of the Holiday season and hours. I enjoyed hearing some of the noises, and the others I absolutely detested. Babies crying/children having tantrums was at the top of my list of sounds I hated hearing. It hurts. But it was interesting hearing the variation in the “cry”. I also heard how kids can reallllllly draw it out to exaggerate/emphasize their point and get everybody’s attention, especially when they start screeching. Shopping carts crashing together in the cart corral was second. Third was people dropping things that made a loud “boom!”.

I’m kind of not looking forward to Black Friday, because I know how insanely noisy it is, and today wasn’t that busy, but my implant/ear is already sore, and is quivering in fear at the expected noise level of Friday.

My Sounds Of Today

– hearing a guest say to me “have a nice day” when I wasn’t looking at them, and realizing that I heard every syllable distinctly! If it hadn’t been so busy, I probably would have hugged the guest, hehe. Just kidding

– while on break, hearing a coworker depositing the coins into the soda machine, making a rattling descent, then finally the coins dropping into the coin return slot. And this was 10 feet from where I was sitting.

– the detail of the printer/register tape when it prints/cuts the receipt.

– being able to locate the direction of the “boom” of things that customers dropped.

– the weirdest was this “littlest pet shop” or whatever it was called. It was a plush puppy dog that made dog noises. I was holding the box, and I heard this whining noise and couldn’t figure out where it was coming from, until the box started howling, and I was like…oy.

It reminded me of that “Oopsie-Daisie” doll that I had as a kid, that several adults absolutely hated, because the doll would crawl a few feet, “fall down”, start crying, then get up and start crawling again, only to repeat.

I don’t even want to get into the other dolls I had, especially the one you had to shake in order to hear the noises it made. But my favorite was “Cricket” and the one I called Pinkie Baby (brand name: Baby Talk). But I was definitely the queen of toys that made noise, and if they didn’t, I usually would find a way.

The start of my shift was interesting, as I got reacquainted with some of the people I used to work with 2.5 years ago, before I transferred to the store at school. Now I’m back to where I originally started.

It was the first time I had met my team lead, JD, and he knew I was deaf before I even told him. I asked him how he was able to figure that out, because I usually fool people, and he said he has experience working with people with disabilities, but that my speech was very good. He himself is a Little Person, so it is always nice to work with people who understand the challenges you have to face, even if our challenges are all different. Needless to say, working with him was absolutely amazing today, because I didn’t have to explain what I needed from him in terms of communication and assistance.

That’s the one thing I appreciate about both locations, we have a diverse workforce. Even if I sometimes have to challenge their expectations of what a deaf person can and cannot do, and get the opportunity to do the jobs that require some degree of “hearing” ability, it is still awesome.

 

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.

 

Actual Implant Surgery Video! – *GRAPHIC* Sunday, July 30, 2006

Actual Implant Surgery Video – WARNING: GRAPHIC

And just because I *had* to…(thanks to Jen)




 

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.

(more…)

 

Cochlear Implant Surgery Part Deux Wednesday, July 19, 2006

It’s been confirmed as of this morning. I’m having my cochlear implant surgery again this afternoon.

They’re going to take my implant out and redo it. If that doesn’t work, they’re going to put a new implant in.

But this explains all the dizziness that I’ve been having (I’ll explain later with a medical picture). I just hope I don’t barf up blood like last time.

 

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!

 

(more…)

 

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

 

3 New CI pictures! Friday, July 14, 2006

 

Me in bed with my grandma’s cat, Benny. As soon as I plopped into bed the day I came home from the hospital, he came running and has been at my side pretty much ever since. He actually tried to groom my incision area, but I made him stop so it didn’t get infected.

 

 

Just 5 Days After Surgery…I have a big fat bruise back there too! Right now it itches like mad.

 

 

And now I have a black eye!

I was able to take my first shower today since Monday. EW! Boy, was I happy to get all cleaned up and get all the icky poo stuff off of me. Last night, I woke up at 3 am and felt like the right side of my face was swollen shut. I could barely see out of one eye. Turns out I now have a black eye, thanks to the facial nerve monitor that they use during surgery. I also have a bump/bruise in the center of my forehead, but it doesn’t show up in the pictures.

I’m doing much better now, don’t really have nausea anymore, but I’m still dizzy. I already fell on my butt today when I was trying to pick up something from the floor. Ow!

I need to put up an account of exactly what happened to me in the hospital, but I can’t sit here for long before I feel sick and get really dizzy. I love you all guys, and thanks for your support and well-wishes on the original post where I broke the news to you!