Good News, Bad news

    This week I got a card in the mail reminding me that it is time to make an appointment with John, the audiologist that programs my cochlear implant.  It hardly seems like six months since I have seen him.  Once again, I am uncertain how things will go.  On the one hand, because whatever changes are happening in my head are incredibly gradual, I don’t really notice that much has changed.  And yet, other people tell me that they can tell that I am hearing better.   

    One of the few places that I notice a difference is in meetings.  Whether it is in a small meeting, or in youth group, or in a large room like the fellowship hall, I notice that I can hear more than I used to.  Not that long ago, I could barely make out anything in our youth meetings and almost nothing at all in a big room like the fellowship hall, but lately I can hear enough to keep up with some of the conversations.  I still am not where I would like to be, but I can tell that things are better than they were.

At least until last week.

    Right around Ash Wednesday, I noticed that it was suddenly harder to understand the people around me and discovered that my hearing aid was acting up.  No problem.  Since receiving a cochlear implant, I have two hearing aids and only one ear to wear them in, so I have a spare.  In fact, at one of my last visits my regular audiologist, Walt, reprogrammed them both to fit my right ear.  So when my hearing aid went on the fritz, I just switched over to the spare.  Things were kind of busy at work so I figured that I would just make an appointment after things calmed down a little.

That worked for two weeks.

    But after two weeks, my spare hearing aid quit.  I emailed Walt on a Thursday and got an appointment the very next Monday.  One hearing aid didn’t work at all and the other works as long as the ear mold isn’t attached.  Even Walt thought that was pretty weird.  In any case, both of them have been sent back to the factory.  That means that the only things that I am currently hearing are coming through my cochlear implant.

And that is my good news, bad news thing divides.

    The bad news is that I really can’t hear anything on my right side without hearing aids.  But the good news is that since I have an implant I can still hear something.  If I didn’t have the implant and both hearing aids quit, I would be in deep weeds.

    The other good news, and really sort awesome, is that even hearing only through my implant, I am doing fairly well.  I can hear reasonably well in most situations and have even been listening to the radio (a little) in the car.  Of course, any place with a lot of ambient noise is almost impossible, and conversation around the dinner table at home is pretty difficult to follow, but I am relatively functional.

Six months ago, I’m not certain that I could have done this well on my implant alone.

So I guess I’m a little excited to see John and have my implant reprogrammed again. 

Who knows how much better things might get?

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Join the Adventure!  

Earlier posts about my hearing adventure can be found here: My Hearing Journey.
Read them all or just catch up on what you've missed!

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Reprogramming My Head

    A week or so ago, I returned to my audiologist, John, who programs my cochlear implant.  It’s a little confusing when I describe it, because I still see Walt, the audiologist who takes care of the hearing aid in my other ear.  Anyway, we started out the way that the last couple sessions started.  John connected my implant to his computer and ran through a series of tones to see how my brain was adapting to the electrical impulses from my implant. 

    But before we got very far, he took me down the hall to the soundproof booths that are used for hearing tests.  There, he re-ran the test that was required to be approved for surgery.  In that test, a voice reads random sentences and you have to repeat back any words (or whole sentences) that you can understand.  This test is run one ear at a time, so I took off my hearing aid and listened only with my implant.  I thought I did well, but John seemed excited.  We laughed because one of the sentences said something about the gecko that is on television commercials.  For some reason, John was very pleased that I had understood the word “gecko.” 

    After he did the math and calculated the results of my test, I understood why he was so pleased.  In the same test, prior to my surgery, I had understood 7 percent of the words.  Now, four months post-implant, I understood 70 percent of the words.  No wonder people keep telling me that my hearing is noticeably better.

    After the testing, John tried some more programming.  Whatever he did was too much made everything sound like my head was inside a garbage can, so he tried some other things.  Along the way, we discovered that of the 12 electrodes that were inserted into my cochlea, two of them don’t seem to be doing much.  Ten of them I can “hear” but the last two, while I can “feel” them, I don’t really “hear” anything with them.  For each electrode, John turns up the volume until I say that it is “uncomfortably loud.”  But for those two electrodes, there really isn’t a “loud” and a “soft.”  I sort of hear something, but it doesn’t really get louder as he turns up the input.  What I notice, is that in one ear, instead of getting loud, I can feel the volume pounding in my head much like you can feel a loud bass thump from a big speaker at a rock concert.  I feel it more than hear it.  The other electrode is similar, I don’t hear it or feel it, but instead, at high “volumes” I can feel my head hurt.  It’s like I have a bad headache that pules with the beat, on, off, on, off, on, off. 

    In the end, John turned off those two electrodes.  His thinking is that if these electrodes aren’t working by now, they aren’t going to.  Most likely, they are in a part of the cochlea that has more nerve damage and isn’t really “talking” to my brain anymore.  In any case, my implant can function with only four electrodes, so I should be just fine with ten.  Before I left, John finished reprogramming everything using the ten working electrodes, as well as some additional changes and enhancements that I now have to get used to.  It wasn’t as much as he had hoped to do, but we’re still moving forward.  John said that for being only four months after my surgery, he felt I was doing very well.

And so the adventure continues.   Not with giant leaps forward, but with baby steps.

But forward is still forward.

Onward.

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Join the Adventure!  

Earlier posts about my hearing adventure can be found here: My Hearing Journey.
Read them all or just catch up on what you've missed!

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Living in Cyborgia: One Month Anniversary

Not MY head.  I only have ONE implant.

    Just before I left on vacation with my sons, I visited my surgeon’s office for my one-month, post-activation, check-up.  Aside from the fact that I was already wearing my cochlear implant, it was almost exactly the same as my activation visit one month earlier.  I saw the audiologist, we checked out all the electrodes in my head, tested for the loudest input I could tolerate, and then reprogrammed my devices with those new levels.

As it turned out, not much had changed from the month before.  The audiologist said that the changes were measurable, but “subtle.”  Regardless, it made a noticeable difference but because the changes were small, I will not return for another visit for three more months.  But while the computer may not be measuring much change, I can “hear” my brain changing.

    When my implant was first activated, everyone sounded like Mickey Mouse or the munchkins from the Wizard of Oz.  As time has passed, I find that people still sound weird but not quite as weird as before.  Voices are, slowly, getting easier to understand and I have occasionally even turned on talk radio.  There I can, depending on the voice of the host, understand some of what is being said where a few months ago I could understand very little, if anything.  When the car is moving and there is lots of road noise, understanding is a lot harder and, for the most part, not worth doing.  Still, it’s an improvement. 

    Sunday, I tried to listen while my friend Ken preached at church.  While what I heard and understood was noticeably different than what I heard a few months ago (which was absolutely nothing, because it sounded like Charlie Brown’s teacher – wah wah wah), and while I could understand bits and pieces of his sermon, it took a lot of concentration and I didn’t get a lot out of it (Sorry Ken).  Even so, I am encouraged by the improvement because I can tell that something is going on.  Even if my progress is slow, and even if I get frustrated that it isn’t going faster, I can tell that my brain is changing.

    A few folks have asked, and I know more are wondering, so yes, I am doing my “physical therapy” but probably not as often as I should.   I’m supposed to listen to myself talk and say the alphabet and lots of other things.  I don’t do that as often as I think I should, but I do listen to my family (and other people) talk and it is noticeably easier to understand them.  As we drove to Colorado and back, I could carry on actual conversations with my sons which would have been completely impossible just a few months ago.

    Clearly, there the road ahead remains long, and progress remains slow, but overall, the news from Cyborgia is good. 

There is progress.

Slowly but surely, I am re-learning how to hear.

And that’s good news.

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Join the Adventure!  

Earlier posts about my hearing adventure can be found here: My Hearing Journey.
Read them all or just catch up on what you've missed!

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To receive email notification for updates to the Crossfusion blog, click here.

Cyborg Adventure: Activation!

    Two days ago, on June 30, 2014, I again visited my surgeon’s office and finally received the outside part of my implant.  This event is normally referred to as “Activation.”  It is the moment when the external electronics (the processor) are added to the internal implant and the electrodes which were implanted deep in my inner ear.

    Despite my repeated warnings that there would be a long learning curve, I think that some people still expected my hearing to miraculously return to normal.  I knew that wasn’t going to happen, and it didn’t.  Even so, the chief audiologist (who was in charge of the activation) felt that it went quite well.  During the activation, the electrodes (there are twelve) were turned on, one at a time, making a tone that increased in volume.  While it did so, I was to point to a chart that indicated my perception of the loudness until it reached a point where it was uncomfortably loud.  That happened eleven times but on one of the electrodes, no matter what “volume” it was at, it felt uncomfortable.  It was strange.  While it did not “sound” loud, I could still “feel” the volume as if I was listening to a bass drum and could feel the “thump.”  According to the audiologist, eleven out of twelve was very good as some people can only discern the levels of volume on a handful of electrodes the first time.

    After all of the testing, and programming was done, we spent over an hour going over all of the accessories and attachments that come with the implant.  I had heard others with a cochlear implant talk about “the briefcase” that they received at activation, and discovered that “briefcase” is not a metaphor or an exaggeration.  I received a real, physical briefcase that was full of spare parts, batteries, wires, and other things as well as an entire shopping bag full of other pieces and parts.  I also have a thick stack of instruction manuals that I am supposed to read over.  Despite spending considerable time going over this with the audiologist, I will be spending a fair amount of time looking over all of these things again and figuring out how and when to use them.

What’s it like?

    For now, as my brain reorients itself to this new way of hearing, the world sounds strange.  I have heard the words “robotic” and Electronic” used to describe it and those certainly apply.  Sometimes people around me (and my own voice) sound like they’ve been sucking helium or are imitating Mickey Mouse.  It’s weird.  The good news is, even though the world doesn’t sound like it’s supposed to sound, I can hear things that I haven’t heard in years.  When we came out of the doctor’s office and started the car, it beeped to remind us to fasten our seat belts and I heard it.  I had no idea that our car made that noise and had never heard it before.  I can hear my phone ring, and water running in the sink, and the click of my computer mouse and I haven’t heard those things in a long time.  Yesterday, as I went out to retrieve the newspaper, I might even have heard a bird sing, though I’m not sure because it sounded weird.

So what’s next?

    As expected, I received a list of exercises that I need to do as “physical therapy.”  I am to take my hearing aid out and, hearing only with my implant, say the alphabet out loud, or count out loud.  I am to have my family read children’s books to me as I read the words so that my brain can begin to relearn what the sounds are.  My cousin, who also has a cochlear implant, said that “weird” will last for a while but my audiologist told me that in six months they hoped that I would be able to hear (understand) as well as I could before my surgery.  After that, they said that I could expect continuing improvement for up to a year, and possibly even two years.

    I knew before we started that this is not a quick fix and, while in some ways things are already better, I know that this journey is going to take a while.

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Earlier posts about my hearing adventure:

Surgery and Recovery                                        June 6, 2014

T-minus Two Weeks and Counting                    May 5, 2014

Cyborg Adventure: Realistic Expectations         April 15, 2014
Managing Expectations                                     March 24, 2014
A New Cyborg Adventure                               March 12, 2014
Reflections on Going Deaf                                June 30, 2011