The Bionic Sound Project

this girl’s journey to sound

Phonak MicroLink MLxS FM System Monday, January 22, 2007

Today’s goal was to get the FM System to work with the cochlear implant. This time, Catherine helped us fix it, and it worked on the first try!

I have the Phonak MicroLink MLxS FM system, along with the audio shoe (T-SP) for the Siemens Triano SP and the earhook (iConnect) for Advanced Bionics.

The boots/earhook look and feel humongous, so one of the issues is cosmetics versus being able to hear. I admit I’m turned off at this huge bulking monstrosity that’s perched on my ear, but after learning what it can do, it’s amazing and may be worth it.

I can hook it up to a stereo/television/computer/ipod and walk around my apartment, wireless up to 100 feet depending on which “cable” is used. The signal strength depends on which cable is used as the antenna is located in the cable. There’s also an option to use it with a cellphone, through BlueTooth, but I didn’t pay attention to that, as my hearing isn’t for telephone use.

Last night, I tried it out on my own at the apartment. It was after quiet hours, so I hooked it up to my computer, and I could hear the music from anywhere in the apartment, loud and clear. The best part was being able to do everyday activities, without having to worry about cords, dropping the iPOD, catching it on something. TOTAL FREEDOM. I could have used this last year, without having to freak out about my iPOD falling out of my pocket and into the tub of chemicals when working in the darkroom.

I can see how this technology can be manipulated…such as hooking it up to my iPOD, putting it in my backpack, and listening to music during really boring lectures (like I would ever do that). But the fact that the technology exists is what is so exciting to me. Nobody else knows that I’m listening to music but me.

I think my mom is going to be very excited about this. No more music blasting through the house when I’m at home. 😀

The only negative to the system that I can see so far, other than the cosmetics is that it cannot be used on an airplane while in flight. It operates on a radio frequency, and the booklet says “do not use on aero planes”. I also get static with it, but I’m not sure if it’s a microphone issue or a channel issue. The FM receiver can be changed to different channels, so if you’re in an area where wireless loops are available, you can change to that channel. But if you’re nearby, and have it set on that channel, you may not get the information from your area, due to interference.

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“You turned it up like WOAH!” Thursday, September 14, 2006

“You turned it up like WOAH!” – Mandy

I had my first mapping at school today. This morning, Mandy and I were joined by Catherine and Don (the other audiologists that I have worked with), who wanted to sit in on the mapping session. The majority of the CI students have Cochlear, and AB makes up about less than 1/4 of the population here (unconfirmed for 2006-2007), so we had to spend a bit of time getting re-familiar with the program.

The best part of the mapping session today…my brain is definitely ready to utilize the CI!

Mandy, Catherine, and Don were deciding how to best program me, based on my reports that I’ve been making over the last three weeks, and Megan’s reports/programs. The other part that they were curious about is why I had the lower frequencies turned up high, but not the upper frequencies. Speech clarity could be an issue because the upper frequencies were missing/not as strong as the lower frequencies, so they wanted to see what would happen with my brain, if we adjusted it.

So Mandy did speech bursts testing, which is the same as the “beep test” that Megan used to do, except it fired multiple electrodes at once. It was at this juncture that we realized that what I was hearing was soft to moderately soft. This explains why speech has started to sound more distorted over the last week, resulting in frustration for me.

I didn’t have to adjust the lower frequencies as much, but I really adjusted the upper frequencies, and I am pleased to report that speech is starting to sound AMAZING with the CI, in the few short hours that I’ve been programmed. It is also starting to balance out the hearing aid now, which is a great relief to me, because I was worried that I was going to have to go without the HA, because I should be listening with the CI, not the HA.

Don/Catherine both told me that one other person has mentioned the radio playing in their head. Apparently in the past, CIs used to have RF interference, but it shouldn’t be happening today with the newer models. And feeling like that I’m hearing in my non-implanted ear when I don’t wear my HA, has also happened to a few other people. So that’s some burning questions answered that I was very curious about! I was warned that these new programs may drain the battery even faster, so I need to continue with the battery log.

I hung out in the common area while they had their department meeting, because I had speech therapy 2 hours later, and tried to do homework, but was filling out paperwork instead. After their meeting, Mandy chatted with me while she ate her lunch. It was fun getting to talk about non-audiology related stuff. She’s so cool.

My exciting news from Monday…I was asked to be in a film that the school is making, and part of it has to do with Cochlear Implants and the shoot is tomorrow. Mandy just told me exactly what it’s going to be used for, and it wasn’t originally what we thought it was. Eeek. *nervous* We’re both talking about how we have to look extra-pretty tomorrow, because we are GIRLS who like to look good!

 

Day 5 and 6: The X-Files sounds much more scarier with a CI. Saturday, August 12, 2006

Friday I chose to spend the entire day in deafness because I had a massive headache. While making lunch, I was looking out the window and waiting for the microwave to beep finished. Distinctly I heard three beeps in my CI-ear and I turned and looked at the microwave and it was showing me that it had just ended.

Now I’m wondering if I’m actually hearing noises with the CI (without the processor on) or if it was just a coincidence. The other day Megan said it was probably phantom noises, when I was telling her about the voices that I was hearing. The whole thing is just freaky. It’s very possible that I just want to hear so badly, that I’m putting sounds into my own head.

Saturday was better, but now I’ve discovered that when I try to lay on my right side, I knock the magnet off of my head. I couldn’t win with the hearing aids either because that would cause feedback. Looks like I’m just not made for listening with my head on a pillow! I wonder how I will pull that off if I ever decide to go bilateral.

I’ve spent part of my day listening to the TV with my eyes closed. I can hear them speaking before the captions show up, which is frustrating. I also watched my favorite TV show, The X-Files, and noticed that it sounds much more scarier and moodier. I can hear all the little details that make the experience much more thrilling. Now I wonder if the Blair Witch Project would be scary to me, because I was the only one that was not scared when I saw it in high school. Everybody was clutching to me and could not understand why I was not scared, and it was probably because I could not hear the creepy background noises to be freaked out.

Susan emailed me today, and we are trying to figure out if I should meet with her first or see Megan first for mapping session #4 before we start speech therapy. I also heard from Mandy, my school audiologist, who has been reading my journal. HI MANDY!

In other news, this journal has been syndicated to blogger.com and I am trying to regain ownership of that account, because it is not correctly updated, and has my posts on it. Gonna work it out with them.

Here are some more links of interest
Earobics
this guy is similar to me
new ribbon CI?
Ears To You
Listening Demos of A CI (i don’t know what my depth is)

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

First Night Post-Activation

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

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

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

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

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

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