Saturday, October 31, 2009

News, News, and More News

Sorry for keeping you guys in suspense ;) for so long,  I wanted to be certain of everything before I posted about it. Now I am, so read on...

I know a lot of people mentioned that external equipment can often be the source of having an unusual amount of trouble with hearing. Whether it be a dirty microphone cover, a damaged processor, a loose coil,- they all affect how you hear. In my case, I changed out all of the equipment and it made absolutely no difference in sound quality. If you, however, are reading this because you're experiencing the same problem, I recommend changing out all external equipment, just to rule it out before proceeding any further.

So, last Friday (10/23) morning my orchestra teacher pulled me out at the end of class saying my mom had sent him an email that she wanted him to relay to me. I went into the office and read it- the Cochlear Rep woke up sick  (darn you, H1N1!) and wouldn't be able to make the appointment- did I still want to go to the audiologist? I wasn't happy about that, but I figured it wouldn't hurt to try yet again with my audiologist. I went to the appointment, and my audiologist told me that she felt like we were missing something and that a new set of eyes should look at it, but she wanted to try one last thing before giving up. It was either that or do some hearing tests, so I figured what the heck...

My audiologist decided to start from scratch and create an entirely new map- the same ol' measuring T's and C's just wasn't doing it anymore. My processing speed/rate on both processors has always been at 900, which is where most people start off, and usually stay. The processing speeds can range from 250 (on the oldest processors, mainly only used by people who have had their implants for years and years and don't like the faster rates) to 3600 (only available on the newest processors, but pretty much too fast for anyone to comfortably use.) My audiologist said that often times with her very elderly patients who aren't doing as well as you'd expect, as well as patients who had been Deaf all their lives, she moves the rate down to 500. The response is usually a sigh of relief, and an exclamation of, "Wow! That's so much more comfortable!" These patients usually find that things sounds "screechy" at 900.

So, how does that relate to me? Comfort wasn't the issue, but clarity was. My audiologist decided to take a leap of faith and see what would happen if we moved in the opposite direction, since I was having the opposite problem. So, starting with my (right) old side, the one I'd been having the most trouble with, she opened a new map with a processing speed of 1200. In addition,  she changed the pulse width. When I first got my implant, I needed it so loud that the C's (loud sounds) were going too high up,and there wasn't any room left move them. Instead, my audiologist had changed the pulse width so that the (excuse me if this exclamation isn't perfectly accurate, this is all from memory) electrode rang just slightly longer, making me perceive the sound as louder. This causes a huge drain in battery life. Since I'm now bilateral, I've been  slowly turning down the right ear, so my audiologist thought it would be safe to move the pulse width back to the norm. A higher processing rate also causes a decline in battery life, so my audiologist thought it was necessary since we were trying out a rate of 1200.

Okay,okay, enough with the technical stuff! Before turning it on, she warned me it would sound weird. It did. She turned it on, and all I heard was a buzzing. Like, if you accidentally had your processor on T-coil. I turned off my left ear and just listened- I could hear voices, but they sounded like they were coming down a long tunnel. My audiologist worked her magic, making the appropriate adjustments. I had no clue if I would like it once I got out into the "real world", but figured I had nothing to lose. Next, we opened a new map with my left ear, changing the processing speed to 1200. We had never adjusted the pulse width on that side, so we left it alone. When it came time to listen to the tones, I remarked at how different they sounded. It was the same pitches as if it had been played while it was at 900, but the sound was completely different. Imagine always hearing the note A played on the violin, and then suddenly, one day, it produced the note A, except it was the sound of a trumpet. Wouldn't you be baffled?

My audiologist attributed this to the changing of the processing rate to 1200. I asked her why it only happened on my left ear, and she shrugged. I knew very well that no two ears are alike, so I didn't think much of it. We made pretty much the same adjustments on that side, but this time I just wasn't so sure on this side, but wanted to try it out and see. Right after my audiologist saved the maps, I was getting ready to put my processors back on, grab my stuff and go on my merry way, when my audiologist got my attention said "Stop!" I looked at her.  She told me to hook up my left ear again. I looked at the computer, and noticed the map for my left ear on the screen. I soon realized what the problem was, why the new processing rate wasn't producing the same result in my left ear. The column that lists the processing speed said 500. It was accidentally changed to 500 instead of 1200-yeah, I bet that could make a difference! She remapped me at 1200, and all was right with the world!

Interestingly enough, this new mapping caused my battery lives on both ear to do a little flip-flop. My right ear, which always required a ton of power and had a battery of life of 12-16 hours with disposables. With the new map, it is supposed to give me 36 hours! That's a huge difference! On the left ear, I had only been using the FM on that side since it required less power. The battery life, formerly around 25 hours, is now only 16 hours. The FM still works with it, but I am guessing I could probably usually it on both ears now- I will have to look into that eventually.

And my actual hearing....what did the map do? Instead of rambling on for another 8 paragraphs :P, I'm just going to copy a facebook message I sent to my audiologist a few days ago after she inquired about how I was doing.

I think it's better! Everything sounds "right"...I can understand people and music sounds good again! About time ;) I was starting to forget why I listened to music in the first place. The left side sounds a little softer/far away, but I don't notice it with the FM on. I am happy and do not want to change a thing! (for now..)

Maybe it is one magical change after all?
And there you have it. Sorry, I have a lot more to write about (hence the news, news, and more news,) but this post is already way too long, don't ya think?!
Happy Halloween!

Tuesday, October 27, 2009

Good news is coming...

as soon as I have a spare few minutes to write about it! Stay tuned..
(Hint: look at the tags!)

Monday, October 19, 2009

In a Funk

When I need a mapping or have trouble hearing, my family is usually the first to notice. It's possible my friends notice too, but they just choose not to say anything :)
It starts out with...
  • A significant increase in the number of times I say "what?"
  • Suddenly needing things a lot louder OR
  • Everything being painfully loud. Lots of shushing!
That's "stage one." Stage two is when I start to notice. Usually I notice the things I've already said, and
  • I'm completely exhausted and worn out by the end of the day
  • I get annoyed easily
  • I snap at people at the drop of a hat (I'm normally quite friendly-honest!)
And that's how I've felt for the past few week-a month. It's not that my hearing has plateaued- I'd be fine with that. I feel like my hearing is declining, which is not okay. And it wouldn't be that big of a deal if I hadn't just had a mapping in which my level barely changed. Even my audiologist said she wouldn't expect much of an improvement, since there was pretty minimal change in my MAP for both ears.

So, what's the deal?

A) I have no clue
B) But it could be..
  1. An equipment issue
  2. A mapping issue
  3. That I'm just stressed, so I don't have as much energy to put into listening
  4. An internal implant/electrode problem (I highly doubt it)
I really don't care why, I just want it fixed. After a long (short, actually we didn't have school Friday) week of school, I want to be able to relax. Unwind with my friends. Do some serious retail therapy.

Instead I strain to follow conversations, and eventually give up and go into my own little world. I put on a a mask of sorts and going into autopilot- smiling, laughing when everyone else laughs, nodding along with conversations. It's like I've gone into a time machine and back two and a half years. Only difference is a new school and harder classes.

And it's just not fair to my family. I go home and take out my frustrations on them, the people I love most. I'm sure we've all done it at one time or another, but I come home tired, angry, and upset everyday. And they feel the emotions right along with me.

Two steps forward, and five steps back.

Sorry if you don't like the short sentences and bulleted lists. I thought I'd try out a little differently just for this post, it seemed to go with how I was feeling.

And no I'm not just going to keep complaining- I've got an appointment with my audiologist and the Cochlear rep on Friday. Cross your fingers...

Saturday, October 10, 2009

Good, but...

In French class, whenever we do any sort of speaking test there is a rubric that we're graded on. You can be rated anywhere from a 0-5 on a variety of criteria. If you score a 3.5-4 on something, that means you scored in the "good, but..." category. As mature as my class would like to think we are, there is still a fit of giggles everytime the teacher says "If you have a good, but.."  (Notice what it sounds like when the comma is removed...) Anyway, it basically means you did pretty well, but there are some things that could have been better. That's how my week went.

For starters, there were no meltdowns, breakdowns, freakouts, or anything of that sort. It's been a relatively happy week.. Some of the material that I was worried about and having trouble with seems to have gotten easier. I really  need (another) mapping, so everything on the hearing front hasn't been too great, which doesn't really help when you're put in one of the noisiest hearing environments.  It seems like the people at the school are starting to understand what I'm getting frustrated with, and are willing to help- as long as it doesn't involve spending, and a very misleading thing called "educational need" is shown.
  • A) Sometimes when you've done everything you possibly can, there's nothing left but to try a proven and well-known technology. If this isn't recognized very soon, there can and will be action on our part.
  • B) My intelligence and ability to study for hours just to learn the material I can't hear in class shows absolutely nothing about my hearing ability. I wish someone (who makes these decisions) would understand that.

Sorry if that's vague, it's probably best that I wait to share more details until after the fact.

Believe it or not, my week was relatively stress free. I haven't been completely overwhelmed, and actually got something that I oh-so-dearly was starting to miss- SLEEP! My teachers have scheduled all of the hardest tests on this upcoming Thursday, so I'm planning on getting a head start on studying so I'm not a complete disaster come Wednesday night.

And for the but.. And it's a big but... ( no pun intended... okay, maybe...)

I've had the same violin teacher ever since I started playing violin over three years ago. I'm not talking about my orchestra director, but my private lessons teacher who I've seen for  half an hour each week to work on any pieces or techniques that I have trouble with, or want to get better at. He's been my teacher when my hearing was getting worse, when I decided to get a CI, was waiting to get my implant activated, watched as I changed and grew along with my hearing, and then my journey with my second implant. He loved to experiment with how well I could hear differences in pitches, and was usually able to tell if an issue I was having with orchestra  was a "hearing thing" or just one of my own little quirks, completely unrelated to how well I can hear.

For the past two Mondays, he hadn't shown up at my school to give me a lesson during my orchestra class (or for any of his other students). I figured he was sick, and didn't really think anything of it. What I didn't know was that he hadn't called the orchestra director to let him know he wouldn't be there, which was something always did. My orchestra director was starting to get worried, and on Tuesday went over to my lesson teacher's apartment and knocked on the door, but no one answered. He soon found out no one had heard from him in a while, and called the police. The police came over to the apartmet, and found that my lesson teacher had passed away in his home at least a week ago. He was fairly young, and relatively healthy.

That's all I know, I have no clue about the cause was or any other details. I'm still very much in shock, and it has definitely made me appreciate each day for what it is, because you just never know if tomorrow will come. I know it won't be easy to find another teacher who understands and is nearly as interested in my hearing journey. I am very grateful for the three years that I had him, and can definitely say I wouldn't be where I am today without him.

Saturday, October 3, 2009

Six Months

Today marks the half birthday of when I got my second implant activated :)

I've written plenty of posts on the benefits (and drawbacks) of being bilateral, so I'll try not to get too repetitive.


When I was deciding on whether or not to go bilateral, the rumors about the Nucleus 5 had just started circulating. As much as I wanted the "latest and greatest" there was no telling when it would come out.  It could be weeks, could be years, and my audiologist couldn't squeeze anything out of the Cochlear rep. So, I (obviously) decided to go ahead with the surgery, as the timing was best for me. I had a full summer planned, and there was no way that I was interrupting my plans with surgery, and I sure as heck wasn't going to do it right after I started high school!

So, as you probably all know, the Nucleus 5 came out a month ago. As cool as it looks...

And as tiny/thin as it is...

And as amazing as the remote  may seem...

(Not to mention the bilateral accesories, AutoPhone, and improved mics...)

I'm still happy that I had the surgery when I did. I should be able to upgrade fairly soon, but had I waited, that would have been 6 less months that I would have heard from that ear. It's made life a lot easier. Without my new implant, I would not be able to use the FM (although I still do get some static, at least it works!) I was worried about music, going into my second surgery.  There's still a lot of ongoing research abot the benefits of having two CIs vs. 1+a hearing aid when listening to music. I was listening to music days after my new ear was activated, and I, personally, have found that it sounds much better with my 2 implants. It sounds great when I have it on my everyday ADRO, but even better when I have both processors set on the music program. I cannot even imagine going back to wearing one. When my batteries die on either ear, I wonder how I was ever able to do it with just one! While hearing in noise and in the classroom is still a challenge, it's a lot easier than it was before.

It was so worth it.