After writing the last post a week ago, I was absolutely unable to sleep last Sunday night. I finally gave up trying, and around 4:30 AM fired off another email to my audiologist for advice. Then, I showered and went in to work about 6AM. She recommended that I call to make an appointment with my surgeon, as I already had an appointment scheduled with her for the 18th. I called the surgeon's office, and they promised to call back after consulting him that afternoon. As the day went on, the noise got worse and worse. when the Dr.'s office called back, they asked me to go to the ER at the U, and said that they would call the ER with the details, and to ensure that an ENT would be there when I checked in.
After an hour and a half of waiting, I finally talked to a Doctor. He had talked to my Dr.'s office, and if I heard correctly, they think the main problem is that the nerves in my ears are being over excited by the sound. If that's the case, I'm not sure why I would be experiencing it in both ears.
Anyway, they gave me a prescription for xanax, saying that it should help calm the nerves in the ear, as well as help me sleep. That's been helping a bit. At least I'm getying some sleep.
The noise in my head is a different story. It still can get pretty bad, but the general trend seems to be slowly improving. It hasn't gone away completely, but when it's quiet, it gets a lot better. It's rarely occuring in both ears at the same time now, but seems to switch from ear to ear. While it can still get pretty loud, it doesn't seem to get quite as loud, and seems to subside a little sooner than a week ago.
It's frustrating, because it really makes it hard to pick out the voices that I need to be focusing on. Hopefully, I will learn a little more after my appointments this week, even if it's just some reassurance.
Saturday, November 15, 2008
Sunday, November 9, 2008
Not Loving It So Far
I'm going to lump the last two weeks since activation together in one post. The second day of of this process was much like the first. Everything was mono-tone. Most sounds were just beeps or warbles in the background hum. Voices, were starting to sound a bit like voices, but they sounded distant, and echoey, like I was hearing them over a PA system in a football stadium.
The morning before my second mapping, brought a big change, though. Just as I was leaving work for the clinic, I stopped to talk to someone. During that conversation, the tone of his voice suddenly dropped. Driving over to the clinic, I was actually starting to be able to distinguish between different voices, even if I couldn't make out what they were saying.
My second mapping was basically the same as the first one. We started with the threshold and comfort levels, and though my thresholds didn't really drop, my comfort levels increased a little bit. Then we did a balancing step: they gave me three tones in a row, and I had to tell them if they were the same volume or not. f they were the same, we went on to the next set. If there were differences, they made adjustments until they were all the same. The end result was a map that gave me more volume.
Since activation, I've been trying to do 20-30 minutes or more of listening a day. This has mostly been listening to Dr. Seuss books on CD, and trying to follow along with the book. When I have the book in front of me, some of the stories, I can pick out some of the words. Most of them though, I get lost after a few pages, but that is gradually stretching out, and I can follow more before getting lost. Of course, without the book, I still can't understand the words, unless it's a portion of the book that I've started to memorize.
Real voices still sound distant, but sounds are starting to come out. Early last week, I filled up a water bottle from a pitcher, and I recognized the sound of the water filling the bottle. Zippers and footsteps make sense most of the time, and I heard the wall clock in my kitchen tick.
My third mapping last Tuesday was more of the same process, but instead of giving me additional volume, they gave me three different programs for different listening environments. I've been trying them but so far, not a lot of difference.
And now the really lousy parts.
In the last few days, I've developed some serious non-stop tinnitus or something. And by serious, I mean loud, like stick your head under the car hood and blow the horn loud. Pretty much nonstop, It subsides a little occasionally, but usually comes roaring back. Thursday night, it pretty much kept me from being able to sleep, and much of the time, it's know loud enough that it seems to drown out most of the sounds I should be picking up with the CI. The sounds have been everything from similar to a car horn, to something like power lines summing in the wind, or someone running a finger around the rim of a glass goblet, I've also been hearing what seems like 4 or 5 different tones at the same time. Something I don't understand about this is that it seems to go form the implanted ear to the other ear, and sometimes even seems to be in the center of my head.
One other thing that I've heard, usually right when I first wake up, before the other sounds overwhelm it is what sounds like static or crackling in the implanted ear. What scares me about that is wondering if there might be something wrong with the implant itself.
I gave up wearing the processor yesterday afternoon, hoping that maybe reducing the stimulation might let it subside. It has a little bit, to levels that might be mid-term tolerable.
I left a message for my audiologist saturday telling her about this, and asking her if I might need to see the surgeon, or her before the next mapping appointment, so hopefully she'll get back to me quickly. If I don't hear from her, I do have an appointment for an auditory rehabilitation evaluation on Wednesday morning at the clinic, so I can let the therapist know then as well. I also have my fourth mapping on the 18th, but hopefully I can get some kind of information before then.
Until then, I'm not really loving this experience so far. They certainly warn you that this is not easy, but the tinnitus is not something I was expecting, and making it even more difficult than I had imagined. As I mentioned before, you read the stories of enough other people that make such rapid, if not immediate progress, it gets frustrating, especially when things you don't understand are occurring.
The morning before my second mapping, brought a big change, though. Just as I was leaving work for the clinic, I stopped to talk to someone. During that conversation, the tone of his voice suddenly dropped. Driving over to the clinic, I was actually starting to be able to distinguish between different voices, even if I couldn't make out what they were saying.
My second mapping was basically the same as the first one. We started with the threshold and comfort levels, and though my thresholds didn't really drop, my comfort levels increased a little bit. Then we did a balancing step: they gave me three tones in a row, and I had to tell them if they were the same volume or not. f they were the same, we went on to the next set. If there were differences, they made adjustments until they were all the same. The end result was a map that gave me more volume.
Since activation, I've been trying to do 20-30 minutes or more of listening a day. This has mostly been listening to Dr. Seuss books on CD, and trying to follow along with the book. When I have the book in front of me, some of the stories, I can pick out some of the words. Most of them though, I get lost after a few pages, but that is gradually stretching out, and I can follow more before getting lost. Of course, without the book, I still can't understand the words, unless it's a portion of the book that I've started to memorize.
Real voices still sound distant, but sounds are starting to come out. Early last week, I filled up a water bottle from a pitcher, and I recognized the sound of the water filling the bottle. Zippers and footsteps make sense most of the time, and I heard the wall clock in my kitchen tick.
My third mapping last Tuesday was more of the same process, but instead of giving me additional volume, they gave me three different programs for different listening environments. I've been trying them but so far, not a lot of difference.
And now the really lousy parts.
In the last few days, I've developed some serious non-stop tinnitus or something. And by serious, I mean loud, like stick your head under the car hood and blow the horn loud. Pretty much nonstop, It subsides a little occasionally, but usually comes roaring back. Thursday night, it pretty much kept me from being able to sleep, and much of the time, it's know loud enough that it seems to drown out most of the sounds I should be picking up with the CI. The sounds have been everything from similar to a car horn, to something like power lines summing in the wind, or someone running a finger around the rim of a glass goblet, I've also been hearing what seems like 4 or 5 different tones at the same time. Something I don't understand about this is that it seems to go form the implanted ear to the other ear, and sometimes even seems to be in the center of my head.
One other thing that I've heard, usually right when I first wake up, before the other sounds overwhelm it is what sounds like static or crackling in the implanted ear. What scares me about that is wondering if there might be something wrong with the implant itself.
I gave up wearing the processor yesterday afternoon, hoping that maybe reducing the stimulation might let it subside. It has a little bit, to levels that might be mid-term tolerable.
I left a message for my audiologist saturday telling her about this, and asking her if I might need to see the surgeon, or her before the next mapping appointment, so hopefully she'll get back to me quickly. If I don't hear from her, I do have an appointment for an auditory rehabilitation evaluation on Wednesday morning at the clinic, so I can let the therapist know then as well. I also have my fourth mapping on the 18th, but hopefully I can get some kind of information before then.
Until then, I'm not really loving this experience so far. They certainly warn you that this is not easy, but the tinnitus is not something I was expecting, and making it even more difficult than I had imagined. As I mentioned before, you read the stories of enough other people that make such rapid, if not immediate progress, it gets frustrating, especially when things you don't understand are occurring.
Activation
October 28 was activation day for my cochlear implant. What can I say, it was a pretty underwhelming event. Not that I really expected otherwise, but you read enough stories of people that adapt so quickly, you can't help but hope you're going to be one of them. We got to the clinic at the University of Minnesota a bit early, so we had a short wait. When my audiologist was finally ready,we went back to her office for activation.
The first step was to plug the processor into her computer, and test the strength of the head piece magnet on my head. The default magnet was a bit too weak to hold the coil in place. My audiologist didn't have a stronger magnet matching the color of my head piece, so she promised to order one, but gave me a brown magnet to use in the meantime. After putting the processor on my ear, and positioning the head piece, she ran a diagnostic on all of the electrodes in the implant. All 22 electrodes passed.
The next step was to establish my threshold and comfort levels. We went through each electrode one at a time. Starting with very soft volumes, and gradually increasing the volume, I had to tell her when I heard the tone. After establishing the threshold for each electrode, we went back and for each one, she increased the volume, and I had to tell her when the volume was loud, but comfortable. After both those steps, she showed me the graph, and I had a pretty narrow dynamic range: Fairly high thresholds, and low comfort levels, especially at the higher frequencies.
Finally, the big moment came, and after unplugging me from the computer, she turned me on to the outside world. At first, it didn't seem like I was hearing anything more than static. After a few moments, I was finally able to discern my audiologists "voice." Not because I recognized anything as speech, but because I realized that i was hearing beeps that corresponded with her speaking. I also couldn't really pick out any sounds from the background hum that I was hearing, and everything was more or less a monotone sound.
We tried some speech introductions, where she made some simple speech sounds: sh, aaa, eee, ooo, while pointing at them, and with me watching her lips. Then we tried it with her shielding her mouth, and I had to point at the sound I heard on a paper. Didn't get a single one. Next we did the same thing with some simple two syllable words: airplane, toothbrush, baseball, etc. I think I got one right.
Finally, we went through all of the items in the suitcase from Cochlear.
There were five boxes inside. One for the documents, one for the two processors, one for the batteries and battery charger, one for accessories, and one for the dry and store. There was also a carrying case for the processors, and a keychain battery case.
The accessories include two personal audio cables that allow me to plug things like computers, iPods, etc. directly into the processor. One is for devices that plug into an outlet, and the other for those that are battery powered. There is also a lapel microphone that is supposed to help in noisy environments.
After some discussion of what I could expect over the next couple of days before my next appointment, we were on our way.
The campus is so noisy, especially around Washington Ave., with all of the trucks and buses, I expected to be overwhelmed by sound, but it still didn't seem like I was hearing anything above that constant hum I was hearing. Over the next day or so, I had the same experience with running water in my kitchen sink and the sinks in the lab at work. At first I thought maybe there were frequencies that were canceling each other out, but I later was told that it is a result of the compression feature of the processor. If a sound gets too loud, the processor will actually compress it to prevent the signal from overwhelming me.
By later in the afternoon, there was only one sound that I started to pick out of the background: I could "hear" the blinkers in my car. I put that in quotes because it wasn't really what you would call a sound. What I was detecting was more of a warble in that background hum. Speech was still not much more than the beeps I initially heard, though the beeps did seem to start stretching out more, so that the pattern and cadence started to be more recognizable as speech.
And that was pretty much my first day of "hearing."
The first step was to plug the processor into her computer, and test the strength of the head piece magnet on my head. The default magnet was a bit too weak to hold the coil in place. My audiologist didn't have a stronger magnet matching the color of my head piece, so she promised to order one, but gave me a brown magnet to use in the meantime. After putting the processor on my ear, and positioning the head piece, she ran a diagnostic on all of the electrodes in the implant. All 22 electrodes passed.
The next step was to establish my threshold and comfort levels. We went through each electrode one at a time. Starting with very soft volumes, and gradually increasing the volume, I had to tell her when I heard the tone. After establishing the threshold for each electrode, we went back and for each one, she increased the volume, and I had to tell her when the volume was loud, but comfortable. After both those steps, she showed me the graph, and I had a pretty narrow dynamic range: Fairly high thresholds, and low comfort levels, especially at the higher frequencies.
Finally, the big moment came, and after unplugging me from the computer, she turned me on to the outside world. At first, it didn't seem like I was hearing anything more than static. After a few moments, I was finally able to discern my audiologists "voice." Not because I recognized anything as speech, but because I realized that i was hearing beeps that corresponded with her speaking. I also couldn't really pick out any sounds from the background hum that I was hearing, and everything was more or less a monotone sound.
We tried some speech introductions, where she made some simple speech sounds: sh, aaa, eee, ooo, while pointing at them, and with me watching her lips. Then we tried it with her shielding her mouth, and I had to point at the sound I heard on a paper. Didn't get a single one. Next we did the same thing with some simple two syllable words: airplane, toothbrush, baseball, etc. I think I got one right.
Finally, we went through all of the items in the suitcase from Cochlear.
There were five boxes inside. One for the documents, one for the two processors, one for the batteries and battery charger, one for accessories, and one for the dry and store. There was also a carrying case for the processors, and a keychain battery case.
The accessories include two personal audio cables that allow me to plug things like computers, iPods, etc. directly into the processor. One is for devices that plug into an outlet, and the other for those that are battery powered. There is also a lapel microphone that is supposed to help in noisy environments.
After some discussion of what I could expect over the next couple of days before my next appointment, we were on our way.
The campus is so noisy, especially around Washington Ave., with all of the trucks and buses, I expected to be overwhelmed by sound, but it still didn't seem like I was hearing anything above that constant hum I was hearing. Over the next day or so, I had the same experience with running water in my kitchen sink and the sinks in the lab at work. At first I thought maybe there were frequencies that were canceling each other out, but I later was told that it is a result of the compression feature of the processor. If a sound gets too loud, the processor will actually compress it to prevent the signal from overwhelming me.
By later in the afternoon, there was only one sound that I started to pick out of the background: I could "hear" the blinkers in my car. I put that in quotes because it wasn't really what you would call a sound. What I was detecting was more of a warble in that background hum. Speech was still not much more than the beeps I initially heard, though the beeps did seem to start stretching out more, so that the pattern and cadence started to be more recognizable as speech.
And that was pretty much my first day of "hearing."
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