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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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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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 isprogress.
Slowly but surely, I amre-learning how to hear.
And that’s good news.

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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 canhear 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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Surgery and Recovery


The deed is done.
    A little over two weeks ago I received my new cochlear implant.  I had hoped to post sooner, but mine was not, apparently, a model recovery.  While it was expected that I would be off work for one week, it turned out to be a bit more than that, and while the dizziness and nausea was supposed to pass in two or three days, mine lasted considerably longer.  In any case, I am now back to work and gradually getting back up to speed.
    As I recovered, I took a few notes in case others are interested in comparing their own recovery.  I don’t suppose that many people will be interested, but my purpose in writing is so that those facing implant surgery might be realistic and not envision their recovery with rose colored glasses.
    The surgery it self was easy.  I slept through it.  Afterward, I felt fine but was likely still under the influence of anesthetics and several pain killers as well as anti-nausea drugs.  Once home, I slept most of the day.  From my, now deaf left ear, I heard noises.  I had read that I might experience ringing in my ears so I was curious what might happen.  I did hear some ringing but also something like distant boat horns.  Overnight I slept, but with a gigantic pressure bandage over my ear, along with the pain, I only slept about an hour at a time.
    On day two I slept a little less.  I heard ringing, but also a sound like wind in the trees before a thunderstorm.  If I looked down (a bad idea) I heard a single tone like your audiologist uses in the soundproof testing room.  My head hurt, but much of the discomfort came from wearing the pressure bandage.  It was sort of like how your foot feels when your hiking boots don’t fit.  As the meds from the previous day wore off my headache got worse.
    On Day three the compression bandage had finally come off, which was great, but I stopped writing things down.  Why?  I felt like poo.  I had been wrestling with post surgical pain, headaches, dizziness and nausea as expected, but also had a runny nose.  Initially, I assumed that it had something to do with the implant surgery, but my wife (Patti) reminded me that two of our kids had been sick the week before and I might have picked up a bug on top of everything else.  Regardless of the cause, aches and pains turned into a full blown, flat on my back, sick to my stomach, head-pounding migraine.  During this time, Patti reminded me that my post surgical instructions were to keep moving and that the more I moved the quicker my nausea would clear up.  The problem was that I felt too awful to do anything.
    By Sunday (Day 6) I stayed home from church but was well enough to get up, shower, get dressed and go to my daughter’s high school graduation and then out to dinner with the family.  It was a great day but I paid for it on Monday.  I don’t know if I overdid it or if whatever bug I had rebounded, but I woke up with a headache again.  After doing a few things in the morning, I ended up back in bed sick the rest of the day (headache, nausea, dizziness, etc.) and was again sick all night.
    The good news is that Tuesday was better and by Wednesday I was back to work.  At work I was still a little wobbly (not quite dizzy, but not really steady on my feet either) and by Sunday I was in the pulpit preaching.  With hearing in only one ear I sounded weird to myself, but everyone assured me that they could hear and understand me just fine.
    The oddest thing was the new sound that I hear in my left ear.  Have you ever listened as you dragged a drinking straw in and out of a cup with a lid at a fast food restaurant?  In one direction it squeaks, and in the other it makes a weird kind of ‘hoot’ sound.  For days, whenever I walked, with each footstep, I heard that ‘hoot’ sound.  Hoot, hoot, hoot, everywhere I went.  Weird.  Today, this has mostly stopped but I still hear it occasionally and while I continue to improve, I am still fighting daily headaches and just a bit of occasional dizziness.
    Perhaps this isn’t exactly a textbook recovery, but that’s usually the kind of luck I seem to have.
    I went in for my post surgical follow-up a few days ago and the doctor said that everything looks really good.  He will see me again for my activation in three weeks.

Stay tuned, I guess.

 

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T-minus Two Weeks and Counting


    Last week, my wife, Patti, and I visited my Otologist (ear surgeon), Dr. Berenholz, for the last time before my surgery.  We are now armed with pre-surgery (and post-surgery) instructions, as well as prescriptions that must be filled.  The date has been set and we are “Go” for launch in two weeks.  I announced my surgery date to the church, informed my District Superintendent, and have asked a retired pastor to fill the pulpit for me on the Sunday after surgery.  My wife will go with me on surgery day and my Mom has insisted on going along so that Patti doesn’t have to wait alone for the two and a half hour surgery.   Everything is ready.
Except me.
    Someone asked me today if I am getting excited about the surgery and that stumped for a few seconds.  Honestly, I think I am well past excited and am moving toward nervousness.  And that, in itself is a little odd for me.  The only other time I have had surgery was for a herniated disc in my back twenty odd years ago.  Then, folks asked if I was worried that I might be paralyzed, but I wasn’t.  I don’t recall ever feeling nervous.  Of course, at the time, what I was feeling was pain, and I was looking forward to waking up without pain.
    My hearing loss doesn’t cause pain but it is a struggle.  I am glad that I have a chance to hear better but my joy is tempered by knowing that this surgery will not be like the last.  The last time, I woke up and knew the pain was gone.  This time I know that won’t happen.  I won’t wake up with hearing.  Three or four weeks later, when they finally turn the Med-El implant on, I stillwon’t have hearing in the traditional sense.  By most accounts what I will have (if everything works), is an ability to hear “sounds” that have been described as “electronic” or “robotic.”  In our meeting, Dr. Berenholz reminded me that my ability to hear and understand will depend upon my persistence in doing my linguistic exercises after surgery so that my brain will learn how to hear with the implant.  Further, Dr. B. said that my ability to hear and understand should be considerably better in six months and will likely continue to improve for as much as two years.
    But even though I have generally been able see the big picture and look forward to the rewards of long-term investments like higher education and retirement savings, this time it’s harder.  It seems more like looking forward to the finish line of a marathon.  It’s hard to be excited about the race.  The finish line sounds wonderful, but enduring the workouts and the long race itself doesn’t sound nearly as fun.
It’s hard to be excited about surgery because the finish line is so far off.
What I’m feeling right now is less like excitement and more like anxiety.

Your prayers are appreciated.

 

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Cyborg Adventure: Realistic Expectations


    Shortly after I wrote “Managing Expectations,” I returned to my surgeon’s office for a CT scan and a final evaluation before my surgery.  At that appointment I had a conversation with the chief audiologist that sounded a lot like the blog I had just written about managing expectations.  He pulled out several sheets of paper and went down a list of potential realities and risks.  Even though I had already written about expectations, and even though I was not surprised by such a conversation, there were things on that list that made me think.
    First, I can expect that there will be a “non-disfiguring” bump on my head where the implant is located.  Duh.  I mean, I’ve seen it, it’s really pretty small, but they would have to grind half-way through my skull to make it flush with the rest of my skin.  I don’t think that I would mind a bump nearly as much as having a hole in my skull.  Besides, I’m just not that vain.
    There is a chance that I might experience “increased tinnitus.”  While I suppose this is possible, I’m not especially worried about this one.  My hearing loss began with tinnitus and if there is one-word that describes much of this adventure, tinnitus would be that word.  The ringing in my ears never stops.  Sometimes I don’t really notice it, but I’ve been to rock concerts with our church youth group and could still hear my ears ringing above the screaming guitars.  So yeah, I suppose it’s possible for my tinnitus to get worse, but I’m not sure how it could.
    It is possible that I will experience dizziness.  Several folks online have said that this may be one of the main reasons you shouldn’t make plans for the first week of your recovery.  It isn’t surprising that dizziness is common considering that they are poking holes in, and inserting wires into, the organ that not only gives you the ability to hear, but also provides your sense of balance.  The good news is that even though I might experience dizziness, it is very rare for this to “be prolonged.”
    Next, there were things that were a little more serious.  Although, rare, it is possible for the surgery to be a failure.  That is sobering but I suppose it’s good news that such occurrences are rare.  Also sobering was the news that, in perhaps 1% of cases, the facial nerve can be damaged during surgery which can cause numbness or partially paralyze your face.  Aside from any damage to the facial nerve, it is also possible for me to experience “numbness or stiffness around the ear” and my sense of taste could be affected temporarily.
    It is possible that in installing/inserting the cochlear implant, that the surgery might cause a leak of “perilymph fluid.”  I had to look that one up.  Perilymph fluid is a fluid contained in a part of the cochlea next to where the implant goes.  If this leaks (and doesn’t stop) it can cause dizziness and might require another surgery to stop the leak.  I’m hoping that doesn’t happen.
    The last two were the most sobering. Med-El, the manufacturer of the cochlear implant I will receive, talks a lot about how their thinner, softer implant is designed to “minimize” damage to the cochlea.  I allowed myself to think that meant I might still retain some natural hearing.  The audiologist was clear that with the insertion of my implant, I will most likely become totally deaf in my left ear.  The only consolation is that since I have so little hearing left in that ear, it probably won’t make much difference anyway.
    Med-El, like everyone else, likes to share good news and success stories about their products.  I have read stories about folks who sing in choir, and a concert cellist who was able to return to the orchestra after receiving an implant.  I knew that many people cannot hear music, even with a cochlear implant, but I allowed myself to hope that I would be able enjoy music and perhaps even to sing again.  I was told that since these implants are designed, first and foremost, to aid in understanding speech, they are not optimized for music and it is possible that music may never again be a part of my life.
    I still have hope, but as I manage my expectations, I have to remember that sometimes reality can be harder than we want it to be.
Still, we press forward.

 

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