The Bionic Sound Project

this girl’s journey to sound

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!

 

Use Your Head Sunday, September 17, 2006

While at the lake today, I learned two very important things regarding the CI.

1. Don’t do a header with a soccer ball.
2. Running to catch a frisbee is difficult, especially if you dive for it.

The CI bounces around on the ear or falls off. I had to grab it (yay for awesome reflexes) before it hit the ground.

I need a way to get it to stay put when I’m running around, and still be able to hear. This is going to be important, because I am going to be playing in the IM Soccer league with PHouse, if we get approved. It will be difficult to run up and down the field with an all-hearing team, and only have one hearing aid, and not be able to hear them if they are calling to me.

Mandy called AB on Friday to ask them about replacing the magnet for the headpiece, by adding an extra or stronger magnet.

It’s difficult for me to wear the headpiece under my hair, cuz I tend to tuck my hair behind my ears a lot, and when I do, it knocks the headpiece off. I can’t put it on the outside of my hair because it is thick, and also fine, which makes it slippery.

The AB rep said to not put another magnet on (so I can wear it over my hair), because it would cause irritation and not provide a good “lock” (connection between the headpiece and the implant), and they don’t recommend that route. Instead, I should wear my hair up, cut it short, or shave a little spot where the headpiece goes.(!!!)

I really need to become more adept with styling my hair, and am at a loss of what to do with it right now. Even though I have the XX chromosome, I’m not one of those girls that played with makeup, hair, and clothes growing up. I was very much a tomboy, preferring to get dirty than to be girly.

Last week, I had to do speech testing with Karen to establish a baseline for improvement. The last time I had speech therapy was about 2 years ago. She gave me my results on Thursday, and discussed what I need to work on.

Results From Speech Testing 9/14

Fisher-Logemann Test (single words)
% Consonant Error = 24/67 (36%)
% Vowel Error = 0/16 (0%)
% Total Error = 24/83 (29%)

Clarke Sentences
98% = 4.7 Intelligibility Rating
(1 being lowest, 5 being highest)

Rainbow Passage
Sample of narrative speech reflected more errors than read speech, and errors were:

er (first), /s/ (mostly in the medial and final positions, and in blends)
st, nd, ns, ks
sh, ch

Words that contain nasal sounds also tend to sound too nasal. Carrying the nasality over to adjacent sounds.

Strengths
Overall very good intelligibility
Communicates ideas and opinions clearly
Excellent lipreading
Highly motivated
Highly intelligent

Skill Areas To Work On
Improve selected consonants and blends
Encourage better self-monitoring and self-correction at the conversational level
Practice a slower speaking rate
Monitor and encourage relaxed communication interactions.

The theory is that with the CI, it will be easier for speech because you can actually hear the speech sounds, and as you get more familiar with speech sounds, you will be able to incorporate them into your own speech, and correct yourself.

 

First Therapy Session with Mandy Friday, September 8, 2006

Today I had my first session with Mandy at 1 pm.

Catherine sat in for the first part of it, and we talked about my CI, and what I had done back home. It was kind of an “intake session” as I am new to their department as a CI user instead of a candidate. Catherine brought up somebody else who had a blog, Tina Childress, who has talked at the school, and is an audiologist who just became a bilateral CI user.

Catherine asked me if I was available on Tuesdays for the CI class, but I have scheduling conflicts and tried to work around it last spring, but no luck. I really wanted to take it, but hopefully they will offer it again Winter quarter. I think it would be highly beneficial for me, as I believe that the best way to make the most progress with the CI is to learn as much as you can about it, and to practice practice practice. You can’t just slap it onto your head and be done with it.

Then it was just Mandy and I, and we talked about my goals with the CI. What did I want to achieve with the CI? I was not sure, as I came into this meeting with an open mind, and no expectations and was going to just let them tell me what we were going to do. I learned back in August, after activation, that I need to relax and just go with flow, and have no expectations. One month later, they ask me what my expectations are, and I don’t have any!

My goals that I came up with today are to be able to use the phone, to make music sound like the HA if not better, to be able to follow conversations in group settings such as with my friends, to be independent of using other people to voice for me/tell me what’s going on.

Mandy then did some tests on me to establish my listening skills with the CI (same tests that Susan had done), and I breezed through all of them, scoring 100%. Her eyes were widening in amazement with each test that was done, and she finally said, after a few moments of silence “I am totally amazed. That has never happened before with others. I’m going to have to brag about you.”

I have trouble distinguishing vowel sounds (which I knew, as that’s where Susan and I had left off), and didn’t do as well as that. They were words that all started with a “B”, such as bed, bat, ball, bird, bee, book, boat, and so on.

So, Mandy now has a lot to do over the weekend to come up with a plan of therapy for me. She is also going to call Susan to get her listening therapy notes, and Megan to find out how she wants to approach the mapping for me. Mandy’s giving Megan control over the mapping sessions, since I’ve done several with her, and the last session I was told to leave the CI alone for awhile, and get used to the program I have. The reason for this is so that my brain can understand the stimulus for sound and adapt to it, instead of a changing stimulus for the same sound.

I also need to start working with/buy “Making The Connection”. Catherine already has the sound files loaded as a MP3 so I can upload them to my iPOD and use them for listening practice. Next week we will find out about the different software programs from AB and Nucleus, as Catherine wasn’t aware of needing a person to help with feedback with the program (unless I misunderstood Megan, as she prefers Nucleus’s program over AB).

I really need to buy a new iPOD, as it’s too small, and the earphone jack is loose, causing static when something is plugged in. That’s going to be one of my big items on my christmas wish list for this year (hint hint to my family).

My current baby is a 20GB 2nd-Gen one from Christmas 2002, that has been absolutely AMAZING, withstanding years of heavy use and abuse. I have 40+ gigabytes of music on my computer, and my iPOD does not hold everything that I want it to. And now there’s more stuff I got to add to my iPOD…some of my old music is going to have to get sacrificed to make room for listening therapy.

I still need to go find a Y-split so I can hook up my hearing aid and CI headphones. Mandy’s going to switch out my bilateral HA cord for a monaural cord, so I don’t have the other one dangling anymore, while I’m listening with my lone HA.

 

Evaluation with the Speech Therapist Friday, June 23, 2006

Today I met with Susan, the hospital’s speech therapist, to undergo the speech part of the CI evaluation.

When we arrived at the hospital, there was a crime scene bus, a police car, and the coroner’s van parked in the circle outside the main entrance. I was wondering what was going on, and was teasing my mom that it was like a episode of Law&Order. I was nervous going in there, because I had never been to that hospital (Desert Sam) and the directions on where to meet her were complicated. The other part of it was that my experience with speech therapists in the past has usually not been good (save for a few gems), so I was dreading going to the appointment. Mom reassured me that she sounded very nice over the phone, but experience leads me to be distrustful.

Susan was waiting for me at the Physical Therapy admissions counter, and after standing there for a few moments waiting to register, she turned to me and asked if I was meeting with her. She also had a graduate student “shadowing” her today, who also did some testing. We did the usual battery of speech-stuff, and I did extremely well on all of them, and they both were impressed with how well I have done with my hearing loss.

The speech tests help determine how well I can speak and understand words. The results helped her to figure where we would need to start in therapy, post-surgically. I won’t have to start at the very bottom of the ladder, but will be more towards intermediate training, because of my comprehension.

The whole experience left me feeling positive, because she was absolutely awesome. I am so happy that I can have her (and Karen) as my therapists, and now I have one for home and school. It’s a relief to know I have a team set up in both states, ready to deal with me after the surgery and help me learn to make the most of my implant.

 

Audiological testing and a curveball has been thrown into the plans Thursday, June 22, 2006

Oh. My. GOSH. Talk about a total curveball in your plans. They’ve moved up my CI date to the 10th or the 12th instead of the 26th.

I met with Megan today (the audiologist) and she gave me some hearing tests that I hadn’t had at school (specifically, the HINT test, among some others). For me, the results were shocking, and in a way, a real eye-opener.

11% on sentences spoken in a noisy environment, no lip-reading.
24% on sentences spoken in a non-noisy environment, no lip-reading.
08% on words spoken in a non-noisy environment, no lip-reading.
100% on sentences spoken with lip-reading in a quiet environment.

The words that I got right? The, and, of, (and so on) consistently. That is what makes up the 11%/24%. And one word…I think it was something like “watched”.

All I have to say to this is that some of my friends will remember the “bastard pony” misunderstanding from my recent birthday party. The results of these tests are a perfect example of how I can hear speech but not understand what is being said.

The basic fact remains that I, without any source of lipreading, am DEAF. I will continue to be deaf even after the implant, but hopefully we can bump up my comprehension level to that of a hard-of-hearing person or better. I can play the part of understanding everything, but I am not hearing and understanding everything that is being said. I hate group conversations with friends or family, because I can’t follow everything, and people don’t slow down or look at me to help me to understand. This is why I space out a lot, because my brain gets tired from trying to fill in the missing words and to understand what is being said. That’s why I feel left out or not a part of things a lot.

So with the results of those tests, along with some big questions that were answered today, I am basically an excellent candidate for the CI. At this point in time, I am definitely a GO for surgery (except for the clearance from the hematologist). I can’t wait to get it, but at the same time, I am scared to death, because my life as I know it will change. What I used to know as sound in the world will be opened up to greater heights. Some things I will have to do differently, won’t be able to do, or ever get a chance to try (metal detectors, MRIs, scuba diving). That, and having a hole drilled into your head is scary enough.

The other thing that was mentioned today was that my surgeon has had several patients who have come back after surgery and were able to wear a hearing aid because their residual hearing wasn’t destroyed! The reason for this is because the implant didn’t go past the apex of the cochlea, so those low-frequency cells were still present. There is no guarantee that will be the case with me, but let’s hope that I will have some low frequency hearing after surgery, because that will help in an environment without my hearing aids.

So yeah, two weeks till surgery. I still have three more appointments to do: speech therapist, hematologist, and then my pre-surgery appointment.

Bring it on.

 

Imaging Tests Of The Head Tuesday, June 13, 2006

Today I had my CT and MRI at 11:45 am.

I started off with a “CT of the temporal bones, no contrast, axial and coronal”. That was short and fast, nothing to it.

I was then led out into the little waiting area, where I had to wait for the guy to come out and take me for my MRI. 10 minutes later, he was there, and we were talking about what we were going to do today, which was a “MRI with and without gadolinium of internal auditory canals and posterior cranial fossa”. He was curious about the CI, so I had to explain it to him and he was asking me all these questions about it. After we went through everything for the procedure, the realization of what he said really struck me…“Are you ready for your very last MRI ever?”

edit 1: I had to cancel my follow-up audiological appointment with Megan on the 14th, because I was sick from the Gadolinium injection. Rescheduled to the 22nd.

edit 2: I got a thank you card from him a few days later, with a personal note inscribed in it, hoping for the very best with my implant and that I would do very well with it. I have never seen such a kind and thoughtful gesture from a diagnostic testing place, especially somebody that I will probably never see again. So that was an “awww” moment for me.

 

Canceling my first audiologist appointment. Monday, June 12, 2006

This morning I spent nearly 5 hours at the hematologist with my mom. I was grumpy after being there for way longer than expected, and then became disappointed because I had to cancel my audiologist appointment. I was looking forward to talking with Megan, plus getting the ball rolling with the process of getting the OK for the CI.

I have to go back next week to the hematologist because they want to run some tests on me for the bleeding disorder. I am not looking forward to it, because the last time I was there and they drew blood, I threw up and almost passed out. How embarrassing.

Tomorrow I get a CT scan and a MRI of my temporal bones (otherwise known as one of the bones of the skull, so they can see the structure of my cochlea/head).
Wednesday I meet with the audiologist and get the HINT test and some other ones.

And then the last thing I have to do is to set up an appointment with the speech pathologist from the hospital.

 

Meeting The Doctor Friday, June 9, 2006

Today I met with the CI surgeon for the first time ever, to talk about the implant.

He seems really nice, and I am comfortable with him. I also met Megan, the audiologist, who came in as an interpreter. I was totally surprised, because I wasn’t expecting an interpreter in the doctor’s office. But she works there as an audiologist, and also knows sign language.

Both of them are very nice, as well as everybody else at the office that I met (except for the other audiologist, who wasn’t there). He did an examination of my ear, and physically, I look good for surgery, but I still have to do audiological testing (since my last test was more than a year old, and insurance companies want current test results). I also have to get an MRI and a CT scan as soon as possible. I also need to get clearance from the hematologist, because he won’t do surgery without his okay. They said that if everything checks out okay, I can get the surgery on the 19th of July.

I’m just a little stressed with mom’s upcoming surgery and being her nurse, and working it in with work, because in the past, my hours have been all over the place, with no consistency, plus the schedule is only 2 weeks in advance. This is going to be a challenge, because so many things are unknown right now.

 

Recognizing Sound (with my new Hearing Aids) Thursday, May 11, 2006

Monday, I had an hearing test with my new hearing aids…my sentence comprehension with my old hearing aids – 48%.

The new hearing aids – 74%.

Over the last few days (especially today), I’ve become more adept at recognizing songs, or even recognizing the artist (even if it’s a song that I haven’t heard before). Like earlier today, I was like “oh that sounds like Oasis”…and it was.

I’m also listening more in class to my classmates speaking, instead of relying as much on the interpreter.

Now I wonder what will happen if I do decide to get the CI. Will I once again miss the cutoff because I’m doing too well with the hearing aids (like what happened back in 1997)? They said the sentence comprehension test for the CI is different than the one that I got. So we will see how that affects my eligibility.

 

Update on Hearing Aids and Cochlear Implants Monday, April 3, 2006

I have new digital hearing aids on. I also got my old hearing aid back in from repair. My first thought when putting on my old fixed hearing aid after we put the old program back in…”HOLY S***!” I had no idea I was missing out on that much sound and was totally awestruck by the changes in listening. I still need a new one anyway, but who knows…I may hold out on getting a new hearing aid till after I get the cochlear implant, especially since I am so happy to have my old hearing aid back and really love those.

I finally got one major question answered for me today from Catherine C., which alleviated one of my major concerns and it has pretty much set the wheels in motion. I was concerned with the new 120-Channel implant from Advanced Bionics, to be released this summer/fall, but my understanding that it is the PROCESSOR, not the implant itself. If I decided to go ahead with Advanced Bionics, I would be implanted with the HiRes™ 90K Implant, and then would be getting the processor. Which one, I don’t know yet. I’m excited but scared at the same time. But my only concern is that you can’t try out different implants like you can try out different hearing aids.

So, after meeting with the ENT last Thursday, and talking to him about the differences in CIs and my candidacy, he thinks I would be a very excellent candidate for a CI. Based on my history with my hearing aids and the amount of training that I’ve had, plus my speech comprehension rate with hearing aids and without hearing aids is pretty excellent for a person with my degree of hearing loss, but still isn’t enough to succeed and understand without lipreading, and falls under the implant criteria. He thinks that if I was to get an implant, that I will succeed greatly with it. In fact, his exact words were “i think you will put on the implant and look back at digital hearing aids and wonder why you didn’t get it sooner”. He also thinks I should consider getting a bilateral implant. That’s not something that I am ready to commit to just yet. I want to start with one, and if I can’t hear as well, then oh well.

But Amanda also posted this link about a new cochlear implant that is 4 to 5 years away.

Anyways, Dr. S and I had decided on the Oticon Sumo DM, because he said they were most like the Widex P38s that I have, and if I really liked those, then I might like the Sumo DM. So I walked in there today to meet with Mandy D. She had the Sumos out and the Siemens Triano SP on the desk. She asked me which one I would like to try out, and I told her about my discussion with Dr. S, and that I wanted to start off with it. She suggested that the Triano SP would be a better match for me, based on my hearing loss and my auditory goals. She was there when I was talking to the ENT and was listening to me explain about my history and my goals with my hearing, and that’s when she was thinking about which hearing aids I should get when we met up again today.

So off we head to the audiology booth. First we reprogram the repaired Widex P38, to my joy. Then we went through the setup process for the Sumos. I could barely hear ANYTHING with them on. We tinkered with the program for it, and she finally had it pushed at max, and I still couldn’t hear much of anything with it. So that was the end of it. (Sorry Amanda, I guess my hearing loss is worse than yours, because I couldn’t hear the powerfulness of it, like you said it was.)

I put on the Trianos, and I could actually hear with them, even though they weren’t programmed. Of course, we still had to set it up, but the basic fact was that I could actually hear when I put them on. And there’s still PLENTY of room for adjustment with these hearing aids, so I’m happy about that.

My only complaint about these is that the audio boots seem rather awkward (i’m borrowing them so I can evaluate how it works with my iPod) and i can’t get them to snap in place without having to take off my hearing aid, snap the boot on, and then put it on. I don’t like that, because you can hear the “eeee” as it’s off my ear and I have to stick it back on my ear quickly, and then set the program to T. And right now, I’m having a hard time hearing with the left ear. I need to go back and get it adjusted. I took it off for the time being because I was really lacking in sound, and put my repaired one back on.

Anyways, Mandy was teasing me that she would save her gloating about the Trianos, and I said to her, “both you and my mom.” Both of them, especially my mom, were warning me to not get caught up in one hearing aid and to try out different ones. So yeah, you guys were right. Ha. :-p

The only thing is that now my eardrums are sore from adjusting to all the new sounds and stuff. I need to go back and fix the settings because I have a headache.

So, if I decide to get these, I need to decide what color I want to get. I am tempted to go with the translucent ones…the only thing is that she said they GLOW. I’m not sure how bright or what color they glow, but that sounds cool. I’m not sure I want to be a glow-in-the-dark girl, but hey, i’m all about individuality. I have no idea what the other colors are, but I really do not want a skin-tone one because after 20+ years of that color, I’m ready for something new. That’s the one I have right now, it’s skin-tone color.