The Bionic Sound Project

this girl’s journey to sound

9-Month Test Results Monday, May 21, 2007

May 18, 2007

 

Overall, I’m rocking the CI with an 20-30 dB hearing loss. The little circles indicate that I can’t hear ANYTHING in my CI ear without the CI. It’s kinda scary not being able to hear anything, but only feel it when it gets to that loudness. Mandy circled it to indicate where I could first feel it. Being completely deaf with no response, scary scary scary. The most exciting news came with the test results, especially with the Early Speech Perception Test, which, in Mandy’s opinion, is the best indicator of how well the CI is working, because it tests similar words, with different vowels and consonants.

  Fall 11/13/2006
(~3 months post-activation)
Spring 05/18/2007
(~9 months post-activation)
CID Sentences List #8 30% 70%
Cochlear Screening
Level D (Top Level)
31/36 (words) 8/10 (sentences) 33/36 (words) 9/10 (sentences)
Early Speech Perception Test
Category #4 (Top Level)
5/12 11/12

Here’s the link to compare with the test results from 1-week post-activation. Huge change.

NOW CAN I PLEASE GET MY HARMONY??!?!?!?!?!?!?!?!?!?!?!

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Mango…The Word That Just Won’t Die Monday, August 28, 2006

The word that just won’t die…MANGO.

Megan said she was going to send me a care package of mangoes to me at school. When I come back in a few months, I’m bringing her a kumquat just because. Maybe an onion. But it better not be a combo of mango and fennel. It’s a good thing we don’t have our own cooking show on the Food Network.

Had #7 today…spent close to 4 hours in there. First I had to see Dr. M. for my checkup. The blood is gone from my middle ear and my eardrum is not purple anymore, but it’s still swollen. He had Megan do a test to see if I have any residual hearing, and I don’t, but it’s probably still too soon to tell.

After that, instead of being in the auditory room, Megan set up in the same exam room that I was in the day I got activated. She had both computers, the programming one, and the Sound and Beyond one. She would tinker with my CI while I was playing with the program and listening to words, telling her what sounded funny as I was going through the exercises, but the picture of the rabbit in the food category is a terrible picture! I was doing pretty well, scoring between 85 to 96 percent with the CI alone. However, I started having trouble with some familiar words, such as cat. And while comparing programs, she would say “how does this sound? what time is it? mango.” just to rub it in because I hate that word!

At one point today, Megan was on a mission to find out just how much I am hearing with my CI, and help me see that the CI is working better than the HA and I’m hearing way more than I think I am.

88% with CI alone.
96% with CI and HA.
80 or 84% with HA alone.

Course, I was cheating because I could not hear the laptop very well with the HA, and had my head right next to the keyboard at intervals so I could hear it, until Megan made me sit up and stay put. :-p

The other thing that has been an issue with the CI is that it sounds good at first, and after a little while, it starts to sound bad (even while I’m still hooked up to the computer). Over a few days, I go from being able to hear voices within a room, to only being able to hear within one to two feet around me. I always thought it was because it was because my neuro-adaptation was fast, but that might not be the case due to what AB said. Kim said they had a patient like that, but that was a long time ago. We also experimented with the pulse width, and at times it would sound awesome, almost like the hearing aid, but there would be a bit of an echo. It’s very frustrating tinkering with the CI, because when one thing sounds good, another thing sounds bad. And there are times I don’t know how to explain it. Sometimes I feel like I’m hearing in my left ear as well, because the sound from the CI seems to “translate” to my left ear.

Megan got on the phone with AB and figured out a plan of troubleshooting. She also taught me how to put the magnet on correctly, in a way that doesn’t twist the wire. We ended up having to go into the bathroom to do that so I could see how she was doing it, and walked past a family that was there for a candidate consultation so it was a little funny. I could also hear people speaking, but couldn’t understand them, and Megan said it was because they were speaking Italian.

The Problem Of Missing/Changing Sound – Solution
1. Make sure wire for magnet is secure, and placed on head properly.
2. Change out T-Mic (possible moisture?)
3. Change Battery (possible low power?)
4. Dehumidify it (and I need to stay on top of making sure the crystals are yellow, cuz the moisture from the environment affects it too.)

I am still not used to the concept of older people getting CIs. My experience has been that younger people and children have CIs, but never people who are in their 40s or older. I’ve always seen them with little ITE hearing aids, or just deaf, while us kids have had the BTEs or the CIs. I’m going to have to get used to it.

Kim had to remind me today that I’m doing extremely well with my CI, and that I need to be patient. She reminds me of and sounds so much like mom, with the “no nonsense from you” talk, and knows just exactly how to get me to shush and stop to think, just like mom does. “How long has it been?” “And you’re getting a score of what?”…”3 weeks…and 96%.” “That’s pretty good.” So here it goes…..I’ve got three programs to experiment with for a week and a half to two weeks. It’s going to be a challenge to leave my CI alone and learn to appreciate it without any adjustments in that time period. Patience is NOT one of my virtues as Dad has reminded me.

Kim also told me that her patients seem to prefer Verizon for their cell phones, so that’s something to keep in mind. I’m hoping that my phone can make it until the full-QWERTY version of the Blackberry Pearl comes out in Q1 2007.

In NY news, I talked to Karen, and she’s going to talk to Mandy about how they can best work with me when I return. I’m going to miss seeing Megan, Kim, and Dr. M, but I will see them in a few months. I really don’t like saying goodbye, especially to people that I like working with. Sometimes it’s nice to finish what you started, with the people you began it with. And this is why being bi-coastal stinks…I can’t have the best of both worlds in one place. I always have to say goodbye to a group of people in each place and adapt to a new environment and time zone two times a year, and I hate it (especially when I have to leave my family).

Today’s Sounds List
– Recognizing clapping at a restaurant
– Mom coming up behind me at noisy restaurant and saying “Sweetie”, and me not paying attention

That was my first recognized word on its own, where I’m not paying attention, and able to understand it without having to think about it.

 

Post-Surgical Tinnitus, playing the piano, and Music Wednesday, August 2, 2006

Still suffering from post-surgical tinnitus. Mom thinks it’s the fluid moving around in my ear, and that it means it’s healing up (which it better be, since it’s only been 2 weeks). My observation is that it gets worse when I bend over or move too fast.

It’s like a rushing, roaring sound, almost as if a jet plane is taking off inside my head…but it’s so odd, when you only hear it on the right side…so used to hearing sound bilaterally…will be happy to get the CI activated and hear ACTUAL sound instead of imaginary noise. And then there are times when I get the noise, and it makes me want to shut down completely for fear of passing out, because it can be very overwhelming. Just a few more weeks and hopefully it will go away along with the feeling of imbalance.

I find that the more I move around now, the better I can train my brain to get past the “unbalanced dizziness” feeling, and start feeling more normal, instead of resting up in bed. My energy level is also starting to come back, which is nice because I’m tired of being a slug. Just gotta finish the X-Files by the end of the summer!

As for residual hearing, I still have yet to hear anything, but I have been trying every now and then. I’m afraid of thinking that I can “falsely” hear it, which is kind of hard. I have a “memory” of what I sound like, so if I talk, I can trick my brain into thinking it hears myself speaking.

I’ve also started playing the piano again, and I really miss it. I’m amazed at how well I’ve been playing, for somebody who hasn’t touched it for about 2 years. Maybe I should start taking lessons again. Now I wonder how the piano will sound after I get the CI on.

Here’s the info on what to look for in CI-Compatible Cell Phones, located on page 4.

I’ve already started making a list of CDs I want to listen to after I get the CI activated and can listen to music. I know I’m definitely going to buy Christina Aguilera as my reward, because it’s CHRISTINA!

Jun 13 – The Futureheads“News And Tributes”
Jun 27 – Billy Talent“II”
Aug 15 – Christina Aguilera“Back To Basics”
Sep 12 – Basement Jaxx“Crazy Itch Radio”
Sep 12 – Justin Timberlake“FutureSex/LoveSounds”
Sep 26 – Janet Jackson“20 Years Old”
Oct 03 – The Killers“Sam’s Town”
Oct 24 – The Who – “Who 2” (maybe)

Just 5 more days.

 

CI Update Tuesday, July 18, 2006

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

 

The Big Day Soon Arrives…(T-10 hours) Sunday, July 9, 2006

Tomorrow’s the big day. Just less than 2 hours till the magic midnight hour of no more food or drink. 9 hours and 17 minutes till I’m on the table (at 7:30 am), having a hole drilled into my head, and part of my skull hollowed out.

The surgery itself will take an hour, but there’s an hour after the implant, where they test it to make sure it’s working. If it isn’t, then they take it out and put the backup implant in. The only wish I had would be that Megan would be there, instead of the other audiologist, since I haven’t met Kim yet and feel nervous about that.

Right now, I am on the verge of freaking out. Earlier today, I was thinking about not going through with it. Then I realized it was ridiculous to come this far and spend ALL this money and time only to go, “oh wait, I don’t want to do this after all”, especially for insignificant reasons due to my anxiety of it all.

I’m not scared about the surgery itself. I’ve got competent and excellent doctors behind this, who are working together. I don’t have to worry about bleeding, because they know what to do to treat that if it happens. Rather, the biggest thing that I’m scared of is what happens afterwards. What is it going to be like? Am I going to regret this? What is sound going to be like? Am I going to hate the way the world sounds, and prefer my hearing aids to this cochlear implant?

I’ve got my doctors and every person that I have undergone tests with, who have looked at my audiological history and said “you are an excellent candidate”. Some of my friends, who have gotten their implants recently, absolutely love theirs and are doing well with it. But I have this feeling that if something were to go wrong, I would have SO much more to lose.

Right now, I’m sitting here typing up my thoughts and playing all my favorite songs, even cheesy ones like Hanson’s “MMMBop”, which just popped up on my list. I want to memorize the sounds of my favorites one last time before I lose all my “natural” hearing in the right ear.

I don’t know how I’m going to survive one month without sound in one ear. Music and sound have always been a part of my life, since I first put my hearing aids on at 4 months old. I have a long road ahead of me in learning to “re-understand” sound. I know that once I get activated, it’s not going to be the same as the hearing aids, and I have to keep reminding myself of that fact.

This is the moment where I need to take a leap of faith and just DO it. That’s been my whole life…taking a leap of faith and hoping for the best. It hasn’t failed me yet.

5 am, here we come. Bring it on.

 

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.