The Bionic Sound Project

this girl’s journey to sound

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Among some of the features of the Harmony:

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

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

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

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

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

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

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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!

 

Post-Activation…One Week Later (Mapping Session #4) Tuesday, August 15, 2006

I am OH so VERY excited. Although, probably not as excited as Megan or Mom was. I don’t think I’ve seen Megan that excited. Today was definitely an awesome day, because not only did Christina Aguilera’s new CD come out today (which I now have in my possession *squee*), I also got some test results with my CI (even more *squee-worthy*).

The answer to last week’s programming riddle: program 1-pulsing, program 2-sequential.

I now have two new programs, and they are getting to the point where they are starting to sound like my “natural hearing”, but faint. There’s still much more twiddling to do with these, but I am confident KNOW that I will reach that point. Even music is starting to slowly sound better.

After programming, I got to do a pure-tone audiometry test in the soundbooth with my CI, testing program 1, then 2. And I have the results of the audiogram. The vertical column measures how loud a sound has to be in order to hear it. The horizontal column is the frequency (or pitch) of a sound, going from low to high frequency.

 

6/22/06 – professional results

 

This is what I can hear with digital hearing aids. The sounds in the “speech banana” is around where normal people with normal hearing can hear it. This is with my hearing aids, and I still can’t hear the high-frequency sounds, so I am sorely lacking in that department.

 

 

8/15/06 – professional results

This is what I can hear with Program 1. My lower frequency (to the left) sounds have improved slightly, but my high frequency sounds have shot way up. I can now hear F, Sh, Th, K, and some others.

 

8/15/06 – professional results

This is with Program 2. This one is a bit louder than P1. Same results as P1, but with a few minor variations in the higher frequency.

Overall, you can see how I’ve changed, going from a digital hearing aids, to using a CI and the results I’m getting one week later. It’s just absolutely mind-boggling and incredible to me, to be able to hear all these high-pitched sounds that I wasn’t able to hear before. I am very excited, happy and looking forward to what’s next!

As soon as I got those results, I went to surprise mom at work, and her face just totally lit up and she was so happy! While walking back to her desk, she was showing the results off to her co-workers, and everybody was amazed, heh. We then went out to lunch with her co-workers (since it was lunchtime when I arrived), and it was my first time in a restaurant since I’ve been activated. I could hear the differences in people’s voices (at our table), and knew if a different person was talking. I could hear speech sounds with the CI that I wasn’t hearing with the HA. Words were fuller and had more detail (but still didn’t make sense to me).

I also had my first speech therapy session with Susan at 3:30 this afternoon. I am going to have to learn to differentiate between similar words but with different sounds/placement. The other fun thing I will learn to work on is tone of voice without using facial/body cues. Gotta start small, then work my way up! Right now my brain is waking up, learning to interpret what all these sounds are that are coming in, and then eventually will start putting some sense to them. It’s kind of like learning how to walk, except you’ve never walked before.

So far, everything is fantastic. I have no regrets. Everything that I went through in July, was well worth it for what I’m getting now. The only negative I have right now is that my incision is itching like mad and starting to become red. We were going to try to switch it to the other side of my head to give my ear a chance to heal (and get the itchiness to go away), but the cable for the headpiece isn’t long enough to pull that off.

I’m starting to wonder if I’m already getting used to this program, because things are starting to sound really quiet once again, so I may be making a trip back to see Megan sooner than later.

Starting today, my hearing aid has started to give me an attitude. I think we have a raging case of jealousy right now, and an unwillingness to coexist peacefully.

New Sounds List
8/14/06 – the word “Now” while listening to Harry Potter.
8/14/06 – hearing benny purr with CI, and realizing it that I couldn’t hear it with the HA.
8/15/06 – differentiating between voices at my table, while in a restaurant

 

Stressing about Monday Saturday, August 5, 2006

So the last few days I’ve been feeling icky. At first I thought I had an upset stomach due to going out to eat the other day, but that wasn’t it. My stomach is just in knots and all tight and achy.

Today Mom asked me if I was still feeling sick, and then asked if I was stressed about Monday. Hmm…maybe that’s why I feel sick…because I am nervous about Monday. I really need to learn how to manage stress and anxiety.

I don’t know what to expect. I kind of wish I could get it over with, but all the anticipation and buildup towards the activation is kind of exciting. But at the same time, no longer will I be able to wonder and dream about what it will sound like, because I will KNOW and have it on my head and using it.

It’s a conundrum.

 

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.

 

Cochlear Implant Surgery #2 Diary and Photos Wednesday, July 26, 2006

Here are the pictures and the diary of my experience from Cochlear Implant Surgery #2, that I’ve been promising to post for awhile!

Link to Surgery #1 diary and pictures (July 10-12)

 

In the car on the way to the hospital for cochlear implant surgery number 2!

Tuesday afternoon, the results of the NRI test and CT scan determined that I needed to have surgery again to fix a minor complication with my implant (easily corrected). I am the first patient EVER in all of his years of practice to have this problem. He’s heard of it, but he’s never seen it happen, so it was kinda cool being a doctor’s first case. He definitely won’t forget me!

However, I felt bad because everybody at the office was waiting for us to come back from the CT scan till after closing hours, because they needed to see the results on whether or not surgery was needed, which I wouldn’t find out until the next morning when Myrna, the secretary/coordinator, came in.

Wednesday morning, 10 minutes after they opened at 8:30, everything was in place and all set to go. I was going to have surgery at 5:30 pm on Wednesday afternoon, same hospital as my first surgery.

(more…)

 

Saline Solution, Phones, and Activation Saturday, July 22, 2006

Losing 7 pounds in one day is really weird. Gotta love IV saline solution puffing you up like a balloon, and then getting it all out of your body with frequent trips to the bathroom. My mom is nagging me because she’s worried about me screwing up my electrolytes + potassium levels.

I’m about to give up on my phone, because I’ve sent text messages and am not getting responses back from people. Some said they sent me messages when I was in the hospital, and I have yet to receive them. I kind of wish I knew if I can use a real phone or not, so I could decide what to do with this phone. At least I know the email is consistent.

I’m excited about my implant activation date, and have already started a countdown to it. That is, only if my doctor says yes. I have to see him for surgical follow-up on Wednesday, and then again just right before I turn my implant on. I’m still on track for my activation date, despite having surgery twice, which is a big yay for me.