Snow, More Mix-Ups, and Incoming Freshmen Saturday, December 9, 2006

Woke up to snow this morning…had about 3 inches on the ground, but by the time I got outside, it had been plowed, so I didn’t get to experiment with the sounds. Basically it sounds the same, but there’s more of a musical “squelch” as your boots press down on the packed snow.

Yesterday, I mentioned that when I had the hearing aids, I didn’t like the sound and feel of snow squishing on asphalt/concrete, nor did I like walking on it. It still holds true. What I can’t figure out is how much of it do I hear versus how much of it do I “feel”? It was too noisy outside with all the environmental noises plus my boots didn’t help.

While waiting for my lunch today, I had the realization that I was hearing more with the CI than with the HA. Maybe I need to change the battery. Maybe I’m just becoming more dependent on the CI for listening. Either way, it’s neat to see the dependence change from hearing aid to cochlear implant.

AB sent us a bill for $175.00 for the headpiece. This goes back to the screw-up that was supposed to be taken care of on September 29th. *sigh* We sent it back, per the instructions we got over the phone, and it’s still an issue.

I’ve been having rushing noises in my ear since I got home and laid down to rest on the futon. It only happens when I move from side to side, and feels/sounds like the tide coming in, growing louder and louder till it crashes against the shore. It’s a bit uncomfortable, but I’m used to it since I lived with it for one month after surgery. Just weird to have it back after not having it for awhile.

We had an open house today at school, and all the Special Interest Houses were there to meet with prospective freshmen and give tours of our floors. At one point, a tour group of deaf kids and their parents came in, and I was looking to see how many had cochlear implants (about 75% of the group, mostly Nucleus, which is about right, considering the ratio between CI companies here on campus).

I was at the table for Photo House, and out of all of them, ours was the only one that had a deaf person at it (me). It was nice being able to talk to the prospective students and sign with them, whereas the other houses didn’t. It’d be nice to have a bigger mix, but the world doesn’t work that way. There’s still a cultural divide between the deaf and hearing worlds, but it’s getting better here. Much better than when I first set foot on campus several years ago. As for our house, I’m the only deaf member, and there is one that is hard-of-hearing but doesn’t sign.

Several members are learning sign through the ASL class, which is pretty cool, and I’m proud of them for doing that. However, I feel conflicted between being me, which is speaking versus signing to them to help them learn. The reason is because I’m not good at signing and speaking at the same time, because my hands can’t keep up with my mouth and brain! That, and I find it odd to sign to a person who can understand me when I’m speaking and doesn’t know sign!

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!

The Three-Month Checkup Friday, December 1, 2006

I had my three-month checkup today with Dr. M and saw Megan for a mapping session. It was at 1, but I thought it was at 11 instead and was there early. But it was 1 pm in NY time, so I get credit for that! But Dr. M was nice enough to see me anyway, and had me come back at 1 to see Megan.

Prognosis is that I’m doing great.

Megan changed the M and T levels, and gave me a program that will work in noisy situations. So now I have one for normal life, one for noise, and one for the iPOD.

I did show up with the kumquats, and she laughed. ^.^ Told ya I would bring you some, and I’m one who sticks to my words!

Got 42% on my listening test for speech in noise, which was better than what I got with the hearing aids, but could be better. (I’m a perfectionist). I had a hard time with the beep test, because I thought I was hearing a kind of prolonged high-frequency noise, so I wasn’t sure if I was hearing it or not.

The most interesting part of the visit was when I was talking to Dr. M about the vertigo episodes from October, where he said it could be a migraine. Not the typical migraine that people think of, as there are many types of migraines in different parts of the body, including the abdomen. So it could be a type of cranial migraine, I think that’s what he said.

Anyway, to avoid that, it involves watching my caffeine, chocolate, and yellow cheese(!!!) intake. Managing stress is also another key factor. But the cheese has to do with the dye in it, and all three come from a bean, and they haven’t figured out why it causes that. Caffeine isn’t an issue, as I’m not a coffee drinker and rarely consume soda. I do like chocolate, and cheese to a degree (rather picky though).

Heading back to school tomorrow for three weeks. I’m not ready for another quarter!

I hope the next quarter will rock academically, because I did extremely well with the Cochlear Implant, for my first quarter having it. I made the Dean’s List for the first time what feels like forever and got a 3.58 for the quarter. It was amazing, especially to get the A in that class I was struggling with in terms of access services. We’ll see what happens winter quarter, as I’m choosing to fly solo…

The First Update On Sounds I’ve Heard While At Home Sunday, November 19, 2006

Here’s the brief update of the last 3 or so days that I have been home.

Flying was okay, no major problems there, but I really appreciate the separation and clarity of sound that the CI gives. However, my inner ear didn’t seem to like flying that much, as I felt a bit separated/off-balance when changing planes and when I arrived at home.

Mom says I seem to have a little bit of trouble understanding her or not hearing her as well as I did in the past. I’m not sure if it’s an adjustment period or what. But it too, shall pass.

She did say that my speech sounds so much better than it did before. As a matter of fact, when I answered the phone with my standard “hello, hold on please”, and handed the phone to my mom, it was my godmom on the other end of the phone. She asked my mom “who was that? I didn’t recognize who it was.” She said my speech was so clear, but she couldn’t understand what I was saying because I talked really fast. (Sorry, Karen! I know I’m supposed to slow down!)

Here’s what I’ve been hearing since I’ve been home.

11/17/06 – the cat (Benny) giving himself a bath. He’s noisy when he licks himself, making this kind of slurping/gulping sound. I can’t describe it. But I was like, holy cow, you’re that noisy when taking a bath? I could also hear him purr without being next to his head.

11/17/06 – hearing the music from the itty-bitty speakers attached to my iPOD playing in my room upstairs, while walking around downstairs.

11/18/06 – the very beginning of the quiet growl that Pippen makes before she goes into a full-blown hiss, and the details that make up her hiss/growl language. I also got bitten (more than once) while trying to cut the mats out of her fur, before she finally peed on me. *sigh*

11/18/06 – hearing Pippen hiss at the dog, before she smacks Elizabeth and tells her to mind her own business. I could hear it, but couldn’t see it.

11/18/06 – the “rhhhk-rhhhk” of the nail file as mom was filing her nails while we were watching a movie. It was driving me nuts! Haha.

11/19/06 – hearing the hydroplane boats at Firebird Lake in the distance (just barely, and only if it was absolutely silent). The lake is about 15-20 miles away from my house. It sounded like a very low “mmmmm”. However, while typing this as my mom’s on the phone, I just heard the bigger boat clearly. My eyes widened, and Mom looked over at me and said, “yep that was the boats.”

As for my guinea pig, he just came home from being boarded at the vet yesterday morning, and I haven’t really had time to see what he sounds like. He was really cute though, when I put him on the floor to run around. It was safe to do so, as the entire first floor is empty, and we are still doing work downstairs. Right now, he doesn’t want to get up and greet the day. He’s usually very vocal in the morning, but not today. We checked on him to make sure he was okay, and he ran out of his house, and as soon as we set it back down, he ran back into it and went back to sleep. I think he was worn out from running around downstairs.

I wasn’t able to get an appointment to see Dr. M and Megan for this break, and have to wait till January! But I will be able to see Susan, and I am excited about that!

I go back to work tomorrow and that’s going to bring a whole new plethora of sounds for me. Whee!

My First Workout and Being Grossed Out Saturday, November 11, 2006

Wednesday, my sound discovery was hearing a classmate of mine cracking her thumbs about 8 feet away from me during critique.

That afternoon, I found out that I won’t be able to get the support services that I want for my major class next quarter. After much conversation, Anne and Sheila both recommended that I not do it, as I’m not ready to be independent with the CI. So I had to rearrange my winter quarter schedule. *grumbling*

It just further resolves my desire to work harder at it, but it doesn’t help when I’m not in the mood to work with Sound&Beyond. I went to lunch at the Commons, after picking up my replacement 18-hour battery from Mandy. Ran into MK there, and we talked about planning for the Holiday Party. Rockin’ The Holidays is probably going to be the name.

Friday was my 4-month anniversary of getting the CI. It was also supposed to be my last session with Mandy for the quarter, but it got canceled. It has been rescheduled it to Monday. We are going to do testing to see how much hearing I’ve gained in 3 months, and also check the T-levels.

Friday wasn’t a good day, as it seemed like everything happened at once, so I was in a bad mood that night, especially after my camera stopped working near the end of my final project photo shoot. My other friend Matt convinced me to go to the gym and work out to relieve my frustration. It was the first time I had worked out since getting the CI, and I went for a 35-minute 2-mile run. It felt SO good, especially when you cross over the plateau between pushing yourself, and feeling unstoppable…the second wind.

The real kicker came in after I headed downstairs to the pool to do some laps. It was the first time I’ve gone swimming underwater since surgery, so I was excited about starting that again. I miss swimming 2 to 4 miles a day, as I used to do that every day in high school, swimming for the nationally ranked #2 girls high school swim team. I wasn’t sure how doing flip turns would affect the CI, but I found out the hard way when I got out of the pool.

My ears hurt a little bit in the pool, but it was nothing compared to the disrupted sense of balance. I was having a hard time staying upright, and felt like I was falling over (to the left). The lifeguard was looking at me strangely, and I do have to admit I probably looked like I was drunk because I was using the wall for support while walking back to the play pool, and stopping every few feet.

I think I’m going to skip on doing flip turns for awhile.

After swimming for a few hours, we went to watch Final Destination 2, which I hadn’t seen yet. I was grossed out by the death scenes in the movie, but it was made worse by the detail of the SOUND in the movie, when I actually watched the death scenes. I could tell the difference because I dove under the blanket when it looked like something gory was going to happen, and I could hear it and felt sick to my stomach! Maybe I won’t wear the CI when watching these types of movies, because the detail of the sound is just more than I ever expected. Eeeeewww. P.S. Mandy, the first movie was the best, this one is just icky.

To make up for the ickiness (lol, I sound like Jen G.), I put in Looney Tunes, and we watched cartoons. I got such a kick out of hearing the sound effects, but didn’t stay awake long enough to fully experience the broad spectrum of noises! But that’s my new plan, to go back and watch some more Warner Brothers goodness, especially my Bugs Bunny!

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.

Scattergories And Episode #2 Monday, November 6, 2006

For listening practice, Mandy and I played Scattergories. It’s good because it forces us to exercise our mind and come up with words. For listening, this game gives me the first letter of the word, and category it is, maybe a bit easy, but still fun.

After we were done, I did an errand on campus, and I had my 2nd episode of the room spinning. This time I was standing up, talking to the guys about recovering the data off of my LaCie. I felt my legs go weak, then saw the room move. Thanks to my fast reflexes, I grabbed the counter just in time, which stopped the episode. I felt shaky afterwards, but I think it was the fear of it.

If it happens at home, I don’t care, but if it’s at school, it’s embarassing.

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.