Listening Therapy

I worked on some listening therapy tonight with my husband and “Making the Connection” (a book) from Advanced Bionics. It was really interesting what I did and did not “get”. My worst phrase by far was “Bye-bye”. I guessed anywhere from “satellite” to “formaldehyde”. After much repetition and more goofy guesses, I was finally able to get it. I swear… I won’t be able to tell that people are leaving! I will probably be too busy looking up to the heavens or in a FEMA trailer.

I did the best with sentences and even got “purple monkey dynamite”. **Disclaimer: THAT is not in the book – my husband used his creative license and threw it in there. You can tell this is probably one of his favorite phrases… and you would be right.

The Difference Between Test Scores and Life

I have been waiting for my audiologist to scan and e-mail me my scores. But, atlas, she has probably been busy. So I am going to give you approximates.

I went into see my audiologist a week and a day ago. We did our usual adjustments followed by questions and answers before I made my way to the sound booth. I had been nervous about this test all week. It really felt like a test I was going to fail, miserably. Let me explain; I have been at odds mentally for awhile now. Now that the CI has started to sound better, I have noticed that the more I wear it, the worse my hearing aid sounds. A lot of people say this is a good thing; I am hearing things I’ve never heard before with my hearing aid and I’m hearing it at a louder level. It just still doesn’t sound quite right and honestly sounds frustrating. My audiologist sat down with me before the test and explained to me that I need to start accepting that my cochlear implant is the “normal” one, not my hearing aid. She said that many people are trying to “make” their CIs sound like their hearing aids and that is simply not going to be the case: the CI can turn the volume up louder than a hearing aid can and a CI can “hear” more frequencies. I think that has been my frustration which has led to me to putting my CI aside, once again, in favor of my hearing aid.

The other thing that was interesting was that when I walked into the audiologist office, my CI was on “directional microphone” and at a sensitivity level of 4. This meant that I was hearing what was in front of me and not very far away from me either. I couldn’t hear things behind me or further than like a foot in front of me. It just goes to show my lack of tolerance for loud noises!!!!

I’m afraid of letting go of what I’ve known for the last 23 years. I purposely got my right side implanted to avoid this, and what do you know, I have to do it anyways. I think everyone is scared of change, and that’s what makes a cochlear implant so controversial.

So back to the sound booth. She did a normal hearing test with only the cochlear implant on and two sentence-recognition tests: one in quiet and one in noise. I could not lip read.

My hearing in my right ear pre-surgery was at about 110 dBs. When she got done with the hearing test, it was at 20 dBs; which puts me up there at “normal” hearing. All I can say is “Holy smokes”.

The sentence recognition tests were amazing too. I got 82 percent of the sentence-recognition test in quiet correct and 51 percent in noise correct. This is up from I believe 13 percent and 0 percent respectively.

In my right ear (with my hearing aid), I only got 38 percent in quiet! It is such a huge difference.

I was sent home with homework:

  • Increase the sensitivity setting on my CI.
  • Listen with just my CI for an hour or more each day.
  • Work on listening skills with a book from Advanced Bionics.

I go back Thanksgiving.

Day Break

Tomorrow I go in for yet another CI mapping. This one’s different. They’re actually going to test me against the hearing tests I took before surgery. I’m looking forward to it and a little nervous too. Unfortunatly, my 5:35 a.m. flight is the only thing between me and the “noise jail”.

Hurricane Gustav

I realize this is off topic, but in case folks were wondering…

My husband and I evacuated on Thursday night with our three dogs and a friend in tow. Things were uncertain that night, but I’m so glad we did. Traffic looks horrific, gas hard to come by and general panic cannot be good to get stuck in the middle of. We’re now hanging out in sunny central Texas, bouncing from house to house of our friends and family and staying transfixed to the news. Our two main concerns are flooding and looters. Nagin has threatened to throw looters in state prison, which doesn’t make me feel better. I don’t mind if people are going to need toilet paper and food, but please leave the TV.

I keep wondering what my life is going to be like after Tuesday.

The Weeks Turn into Months

It’s been quite the interesting one month and so weeks since activation. Updates have been pretty few and far between. I will attribute this error to my trails and tribulations of having a cochlear implant. My 20-plus years of being profoundly deaf are making this process a slow one. However, none-the-less, things are progressing!

I have visited the audiologist every two weeks since activation. Our hour that we spend together consists of about 30 to 40 minutes of questions and discussion and only about 20 minutes going through the actual adjustments. At each appointment I am given only two types of tests. For the first one the audiologists gives me sets of beeps and goes through each main frequency level starting at the low frequencies and working up to the higher ones. He asks me to count the number of beeps in each set. When this is done, he gives me a chart with a bar. On the left side of the bar there’s a marker that says “first hearing” which means this is when I first hear something. The next marker to the right is “soft”, then “medium”, then “loud but comfortable” and finally “too loud”. Our goal is to find a volume I can listen to on each frequency for long intervals. There are really no marks as far as development goes. The experience is different for each patient. The audiologists go at a pace that is comfortable to the person using the device.

As far as my experience goes between the appointments: it was pretty awful at first. As I said before, I was given eight programs, each a little louder than the previous. I was asked to gradually turn up the volume – at my own pace. Each appointment was like this. This proved very stressful the first few weeks. I was faced with countless headaches and even nausea. I even was sick with a cold for a week (although I am sure this is not the fault of the implant – just one of those things that comes with being human). I would often leave the implant off for long periods of time. I felt guilty about this a lot – which is probably the real reason for my lack of posting. I knew I needed to wear it to get anywhere, hearing is not something that can just come to you. You have to work at it. Practice really does make (almost) perfect when it comes to hearing.

Then last week everything changed. Instead of my usual two weeks, I was given three weeks before my next appointment. I breezed through the programs in a week and a half, much to my amazement. With my volume maxed out, I think I finally had a chance to just focus on hearing rather than having to deal with the constant change and the headaches that went along with it. Then one day I decided I wanted to see how far I had come. I could hear little things and understand noises here and there. That however, isn’t what I want from my CI. I can get that easily from my hearing aid. I wanted to understand speech. So I turned off my hearing aid, leaving my CI on. I was in the car and decided that I would plug in a Grammy Nominees CD. These were songs I knew fairly well and before long, tears were coming to my eyes as I jammed along to (believe it or not) Britney Spears and Kid Rock. I could follow along in the songs! This was great. I have not heard a thing out of that ear for 23 years and I’m following along to music!!!??? It was really amazing. That was a real starting point to real hearing rather than just some gorram noise.

I think I am blessed to be able to use my hearing aid to the up most of my abilities and do well at it. It created “memory” for my left ear. Even though I had a rocky start, my brain knows how to interpret sound from a 23-year-dysfunctional ear that’s receiving some type of electronical stimulation that it has never received in its life. I am in awe how “plastic” our brains are, simply in awe.

After that moment in the car, I really began practicing. On the way to work, I started listening to talk radio with just my cochlear implant. I don’t pick up much, but I know I heard “The Dow Jones is up by (36?) points” and “south (of the lake)”. At a later date, I picked up “United States”, “frustrating” and “President Bush’s” – though not consecutively in that order. I also finally got my book in the mail, and am listening to the audiobook as I read. I just finished today and plan to try to listen to the audiobook again on a road trip for work on Wednesday. Since I know the topic and most of what was said, I bet I could pick up quite a bit.

Today’s visit to the audiologist was a bit different than the others. My audiologist programmed my CI to handle environmental sounds rather than it being a way of rehabilitating my brain. I was given four programs. The first was for everyday events, the second took advantage of the directional microphone which is programmed to focus on sound in front of me, the third was programmed to reduce background noise and the fourth was designed to listen to music. I didn’t understand the fourth one other than it’s supposed to pick up more sounds and heighten background noise since the CI can’t tell the difference between background noise and music. Oh joy. I think I’m avoiding that one.

One thing that was interesting that I learned today. There are frequencies that the cochlear implant can “hear” that no hearing aid can pick up on. They’re the higher frequencies after where the hearing aid will “drop off” in audiogram. Wow. I wonder what they sound like and how it makes sounds different.

This all is a pretty fast leap from when I felt “head throbs” as my first introduction to CI hearing. Things sound less like bells and more echoy overall now.

P.S. I love the violin solo in “Circle of Life” from Lion King. It is gorgeous!

First Days

The first few days with a CI have been interesting. I feel that I have a better understanding of why people do not like to wear it and even stop wearing it after awhile. It can be the ultimate tinnitus/headache inducer and yet not be one (as soon as you take it off, it goes away – WEIRD). A cochlear implant is not something that is easy or an instant fix. It takes a lot of time and energy if you’ve been deaf a long time (I think it is probably easier for someone who just lost their hearing) I thought it would be a lot like switching from analog to digital hearing aids, but it’s a lot more difficult than that. My brain really doesn’t know what to do with all that loud ringing, but it’s making progress.

I haven’t felt well these last couple of days. My stomach feels nauseous a lot. It’s not a strong nauseous feeling – it’s pretty faint. I’m not sure if it’s because of my disorientation from the cochlear implant or if it’s from something else. Before my surgery, my doctor had informed me that I have a profound loss of balance in my semicircular canals. Basically, the surgery can’t make it worse than it already is. So it quite possibly could be something else like the medicine and if so, then it should go away soon. It may also be because I’ve been kind of pushing it with the volume. Maybe I’m just turning it up too fast. My logic at the beginning was to push my brain and maybe that’s not such a great idea. Today has been my “take it easy” day.

I think I’ve made pretty significant progress with it. Despite all the nausea and headaches (which was to be expected) there’s a lot of good things. The ringing in general has become more defined. I feel like having a hearing aid on has really helped a lot because it helps the CI side identify the sound and now things are becoming part of what I hear on my hearing aid side – only louder. It’s not perfectly defined yet, so I hear speech worse than with just my hearing aid. When my CI side has figured out what I am hearing, I hear what I usually do on my hearing aid side, only louder with a slight echo to it.

Right now speech sounds like bells, but I can identify each syllable and spaces between words when I am watching the person’s lips and reading captions (on TV). I can differentiate between speech and general environmental sounds with just my CI on. Everything sounds like bells, but the bells that speech makes is just slightly different than everything else. Every now and then, I pick out bell “patterns” and realize that I’m listening to something! Today I was in my office and the bells were making rhythmic patterns. It sounded like something electronical was going in a cycle/circle so I believe it may have been a computer fan. I lost the sound though before I could ask someone what it was.

Last night I was listening to talk radio and I could’ve sworn that for a short while my cochlear implant was picking up their talking when my hearing aid could not. It really fascinated me. I kept playing with the radio to see how soft I could make it and still hear it. But I think after a little bit, my brain made an adjustment to the CI (time to turn up the volume) and I couldn’t hear it any more.

I went to a bar last night too. It was so loud, but for some reason I think it may have been slightly easier to understand other people in the bar. Either that or my mind is playing tricks on me!

I told someone the other day. If there was a pill that could make me hearing, I wouldn’t take it (yes, this is after activation!) There are two reasons. One: oh my gosh, everything is so LOUD. And to think, there are still five more programs to get through in a week and a half! Each program is louder than the previous. Can you imagine how painful that can be to just turn someone on? It makes me shutter just thinking about it Two: I love being deaf. Everything is so much calmer. I really don’t understand why hearing people like listening to all that loud noise constantly. I love my breaks and my beauty sleep!

I Got Bells

Yesterday was activation day! It started off with a series of tests that weren’t meant for me to hear. Followed by beeps. I was told to count the number of beeps. Except they didn’t sound anything like beeps – more like head throbs. I was counting the number of head throbs they were giving me! After awhile they started to sound more like sounds than throbs. Finally, came the interesting part – going live! All I could hear was bells… not the pretty ones that churches ring, but raspy, staticy bells.  At first the bells were constant. The room was small and there wasn’t much noise in there. The audiologist told me that they had a loud computer fan in the room and I was probably hearing that. That was pretty neat because even though it sounded awful, the cochlear implant WAS picking that up. This is something I wouldn’t be able to hear with my hearing aid. With speech, since my hearing aid is on, it sounds like an bellsy echo after each word.

I was turned off and sent home after an hour. Today we went back and learned how to use it. It was awful to put on because the stimulation was so overwhelming. Since then I had it on pretty much all day. After I took it off to rest for about 30 minutes and then put it back on, it was painful and took a long time to get used to again. I think taking it off and putting it back on again 15, 30 or more minutes later is worse than just wearing it, no matter how annoying the bells are.

Things I hear:

  • The clicking of the keys and wheel on my Blackberry.
  • The clicking of the keys on the keyboard.
  • Water is VERY loud. The worst is when I flush the toilet.
  • The bottle cap screwing on and off.
  • I think I’m starting to hear paper.

My audiologist told me to keep wearing my hearing aid. I think that helps with picking up these sounds.

I was given 8 programs – four on each external piece. The volume goes up 10 points including 0 so I have about 80 stages to go through in two weeks if I feel comfortable enough to do it. I’m up to volume 4 on program 2. I’m sure tomorrow morning, I will be turning it waaay down. Ow.

We took a video of it. Hopefully, we can clip that and caption it before putting it up. It’s kind of funny because when I first start hearing something, I literally jumped out of my chair each time.