Entry #3: March 25, 2003 (two weeks after CI activation)

On March 11^th, Sarah, my parents, my audiologist – Jennifer Yeagle, an audiologist-in-training – Rebecca Blankenhorn, and I are sitting in Jennifer’s office anxious to see how things will go today with the CI activation. 

Jennifer begins the session by first asking me several questions to ensure that I’m not experiencing any negative after-effects of the CI surgery, such as not experiencing any dizziness or lack of balance.  We’re all smiles after I confirm I still do not have any post-surgery effects other than continuing slight tenderness in my head and slight taste disturbance in my mouth (still like a slightly burnt tongue).  We also make good note that my scar has healed quite nicely and there is little evidence that I had surgery, especially since my hair has mostly grown back.  Other than the tenderness and taste disturbance, I was virtually back to 100% immediately after submitting my last CI Journal Entry #2.

Jennifer first tests the headpiece (the magnetic component of the CI that connects the internal and external devices) to determine how much magnetic strength I will need.  The CI device comes with 4 small magnets that fit into the headpiece, but it is recommended to use the minimal number of magnets needed because, as Jennifer explains, the more magnetic power (or the tighter the headpiece is), the more likely one may develop skin breakdowns or sores, especially in the area between the headpiece and the internal device.  Anybody who has their magnets too tight can have this problem, but those with thin skin may be more susceptible (such as babies and elderly individuals).  After a little experimentation, we agree that 3 magnets will be most appropriate for me as the headpiece would fall right off with only 1 or 2 magnets whereas it stays on pretty well with 3 magnets even when shaking my head a bit violently. 

Jennifer then attaches the headpiece to the Behind-The-Ear (BTE) sound processor with the headpiece cable.  Jennifer also attaches the BTE sound processor to the end of a long cable that runs to her laptop, on which she uses software to map or program my CI.  I then place the BTE sound processor and the headpiece on/by my right ear with a little trial-and-error along the way, as it will take only a few tries to get it right from the start. 

Before turning on the CI for the first time, Jennifer triggers the software to execute a test to ensure that the CI is set up and works properly.  This test last only a couple of minutes.  While the test is running, Jennifer informs me that I will actually be receiving the High Resolution (HiRes) program, which is new software that was just recently approved by the FDA.  The HiRes technology is one of the key reasons why I selected the Clarion over the other CI alternatives.  Studies have shown that the HiRes feature provides better sound quality than its competitors.  Simply put, getting the HiRes is like getting a TV with higher resolution.  I am relieved to know that I'm definitely starting with the HiRes, as I had feared I might have to start with an older software.  It would have been a nightmare to start with an older software for such a short time and then switch over to the HiRes just a few months later. 

The test is now complete and shows that my CI is set up and working properly, Jennifer then gives me a chart that graphically depicts volumes 0 through 10 – inaudible to too loud.  Jennifer explains to me that as she programs my CI, I will hear beeps.  In response, I am instructed to point to the chart accordingly to the sounds, as they get increasingly louder.  Jennifer assured me that once I pointed to 6 or 7 (loud but comfortable), she will stop the increases in volumes. 

Here is the big moment!  After take a deep breath, quickly glance and wink at Sarah and my parents, I give the signal to Jennifer giving clearance to begin!  But I don’t hear anything for at least a good half-minute.  But I do notice my heart pounding.  I keep telling Jennifer that I don’t hear anything (with my finger on ZERO on the chart).  But wait a minute!  I hear or perhaps more appropriately feel my heart pounding harder and harder.  I then recall a friend of mine telling me that he confused his first sounds with feeling his heart beating.  I begin to realize it’s really not my heart that’s beating – it’s the beeps I’m hearing!  In fact, it feels more like my heart was in my head as it felt more like I was feeling the beeps, rather than hearing.  I crack a smile and say that I hear/feel it, but explain that it feels like my heart is beating.  Jennifer assures me it’s the beeps that I’m hearing and my initial reaction is a common one.  Jennifer continues to crank up the volume; hence, I move my finger up the chart as I hear/feel the beeps louder and louder.  Jennifer stops it once I hit 6 or 7.

I then look at Sarah and my parents and think to myself, “Uh oh!  What have I gotten into here!”  I think all of us in the room finally let go of a sigh in relief.  The gravity of the situation really hits me here, but Jennifer keeps me on track and as we go through the same process again until we have covered all 16 channels of electrodes to the brain.  Fortunately, we can go through the channels in pairs; hence, we’d only have to go through the process 8 times.  We go through the routine of hearing nothing to feeling like my heart is beating in my head once again 7 more times!

We complete this process in less than 15 minutes.  I was originally told that it would take about 90 minutes to go through the mapping, but Jennifer explains that it’s much quicker (at least half the time) using HiRes than it would take to do mapping using older software, which is another great plus about the HiRes feature!  

The curiosity finally gets the best of me as I ask Jennifer for the second time to show me what is going on in her computer (as she is reluctant to show it to me as she doesn’t want to give me any visual cues during the mapping).  I finally am able to see an image of my thresholds set across the board very evenly, which is a good thing as it indicates that I am hearing sounds in a consistent manner across all channels from the cochlear implant into my brain.

We then go over all the accessories that came along with the cochlear implant.  Jennifer explains the use of each accessory, including how to recharge the CI batteries.  I receive 4 batteries – two extended life batteries and two standard batteries.  The Powercels or extended life batteries last approximately 10-12 hours while the standard batteries seem to last approximately 6 hours.  I am quite pleased with the battery duration, especially given that it was one of my primary concerns when selecting the Clarion over the other alternatives.  But the HiRes software really helped improve the life of the batteries whereas the older software would only allow the batteries to last a bit shorter.

While we are going over the accessories and Jennifer answers our various questions, I pay close attention to the various sounds.  All I’m hearing is constant beeping in my head as if my heart is beating in my head.  Whenever one is speaking, I notice that the sound does not come until at least half a second later.  This problem continued through the next 24 or 48 hours before I notice it is gone.  It is like watching a badly dubbed movie and it makes it very difficult to follow conversations.  I also notice that I could only hear Jennifer’s voice as she was sitting to my right side, which is where my CI is, but I could not hear Sarah’s or my parents’ voices as they were sitting to my left.  I wince, as I knew this was going to be one of the major pitfalls of the cochlear implant.  I voice my concern about this and ask Jennifer if she could program the CI in a way to maximize the sounds from the left side.  Jennifer said she could increase the range of sound, but suggests I leave it on default and give it a chance to see if it works better later.  Jennifer is right as I have noticed the ability to pick up quite a bit of sound from my left side as time passes. 

After we finish going over the accessories, Jennifer then asks how the sound level is.  Over the past half hour or so since she first turned it on, the sound level had gone down a fair amount whereas we had not turned down the volume or changed any settings.  This indicates that my brain adapted to the CI in such a short amount of time.  Jennifer proceeded to crank the power up a bit.  Jennifer also takes the opportunity to program the second and third programs on my CI.  We agree that my three programs should be the same across the board with one exception – Program 1 will be the lowest volume (which I’m on now) while Program 2 and 3 will be medium and high volume, respectively.  There is no point in programming my CI to have one program for noisy environments like a restaurant where background noise would be minimized so I could pick up the voices of those closest to me and another program just for the phone for at least a month.  Having the three programs set at incrementally higher volumes provides me with the opportunity to improve my threshold levels for sound on my own in between mapping sessions.  In other words, I would expect to use Program 1 for the first 8 hours, then Program 2 for the next 8 hours, and finally work my way up to Program 3 just before the mapping session the next day as my brain adapts to the higher volume. 

Jennifer runs through a few more spontaneous tests by clapping her hands, knocking her knuckles on the table, jingling her keys, etc.  I’m able to hear all of the sounds quite strongly, but it felt more like my heart was beating in my head, not my chest since the sensation of the sound was so strong that it felt like I was feeling heartbeats in my head!  I don’t think I could have heard the keys jingling without my hearing aids whereas clapping or knocking was never usually a problem.  We run over a few more questions and answers before we break for the day.  Jennifer advises me to “experience” sounds for the next 24 hours.  I will be back the next day.

Sarah and I find ourselves back in my audiologist’s office 24 hours later (March 12^th).  I recall my observations to Jennifer about the sounds I heard since leaving her office yesterday.  I mention how I’m hearing a lot of sounds, but have no clue where the sound is coming from or what it is.  Although I am picking up a lot more sound than I ever did before, I am unable to discriminate any sound whatsoever unless if I have visual cues with one exception.  When we were at my mom’s house, I could definitely tell whenever someone was going up or down the steps as it sounded more like a “THUMP THUMP” than a “BEEP BEEP.”  Voices do not sound natural at all.  Voices sound like an extremely bad radio broadcast with a lot of static although I did notice significant improvement over the period of 24 hours.  Reading the newspaper or doing the dishes was definitely a challenge as I found it quite loud and chaotic!  I did admit that I was pleasantly surprised that I did not get as much of a headache as I had anticipated with all the new sounds.  Most interestingly, I had already surpassed the thresholds on all three programs, which Jennifer set the day before.  Program 3 was already not loud enough for me.  I wanted the power to be cranked up even more!  Jennifer assures me that I am well within range of what’s to be expected in my first 24 hours and that things will continue to progress.

We then proceed to begin the second mapping.  The second mapping was quite uneventful as we pretty much went through the same routine as the day before.  The key change Jennifer makes is simply to increase the volume on all three programs so I will continue to increase my threshold for sound.  I’m now back to Program 1 and I expect to be at Program 1 for the next couple of days before progressing to Program 2 for the following couple days and then finally achieve Program 3 thereafter prior to my 3^rd mapping the next week.   After a few more questions and answers, we once again return to my mom’s house in DC where I’d (and Sarah only for a couple days before she will return to work) spend the next week  until the 3^rd mapping.  Fortunately, I do not have to return to work for another 10 days since I obtained approval to take two weeks of medical leave enabling me to take the time to adapt to my cochlear implant and not place myself in awkward position of working with clients so soon after being mapped, especially since I can’t make much of voices yet.

Throughout the week until my next mapping, I continue to notice slow progress in my hearing.  The delay in reception of sound is gone, which means my brain has adapted to quickly processing the sound.  However, my brain is very slowly learning how to discriminate sound.  I grew up learning how to hear using my hearing aids and now I am compelled to learn a new system.  I cannot expect to adapt to the CI overnight.  It will be at least a few months.  It’s a stark reality made clear to all of us, especially when Sarah and my mom call me from behind and I do not respond whereas I always did before with my hearing aids.  I do hear sound, but I simply assume it’s someone’s footsteps, the radio/television playing, etc.   At some point between the 2^nd and 3^rd mappings, I was at my computer when my mom was calling me and I did not respond.  My mom tapped me on the shoulder and frantically said, “I’m really worried about your cochlear implant because you’re not responding to my calling you.”  I reassured her that I hear sounds, but cannot discriminate it.  My mom then tests me and says something while covering her mouth.  I remind her, “Mom, I just told you… I can’t discriminate sound yet, but you just said either three words or syllables.”  My mom is then somewhat assured as she was impressed that I was able to tell she did say three words. 

Slowly over the course of the week prior to the third mapping, I simply focus on experiencing sounds rather than do formal auditory therapy (in anticipation of doing so much of it in near future).  Besides, I don't think I'd accomplish much in auditory therapy during the very first couple of weeks after getting activated.  I notice that the sounds I hear are becoming less static although they remain quite mechanical.  Words are starting to sound more like words whereas I could slowly begin to easily discriminate environmental sounds, especially with visual cues.  For example, I could easily discriminate the sound of the toilet flushing versus the sound of the newspaper crinkling, as I’d read.  But I'd probably confuse these sounds with a number of other ones without visual cues.  

On the day before my third mapping, I decided to spend a good hour testing my hearing by using an English for Second Language website, which provides good testing programs for people to learn to listen to names, numbers, prices, times, etc.  Each test contains 10 multiple-choice questions.  Each question asks which of the multiple choice options matches the voice played in the program.  For example, I had to identify which number the program played for the corresponding question of: “(a) 15, (b) 50, (c) 17.”  As you can see, two of the numbers are usually very similar, which made the tests challenging.  But to my delight, I score 50% consistently for names, numbers, prices, times, etc. Not bad for just 6 days of having the CI on!  But I can’t get ahead of myself.  I would have never recognized what the program was saying had I not had the visual cues of the multiple-choice questions.  I could tell which was which for the most part by the number of syllables, etc. I would have done much better with my hearing aids, but I expect to do even better with the CI in the same tests once I mostly or fully adapt to the CI.  A friend of mine once asked me, "what do you mean by adapt to the CI?"  To adapt to the CI does not necessarily mean to discriminate all sound.  What I mean by adapting is having my brain fully adapt to the new way I'm hearing, especially to the new sounds like the high frequency ones I'm hearing for the first time.    

Despite the clear progress I’m making, I am still frustrated because I have high standards and would like to see myself making better progress.  When sharing experiences with peers, some tell me that they adapted within days, but others took many months to adapt.  Even a couple of people did not experience positive results over the long run.  But I remind myself that I’m well within range of the expected progress.  It is important to keep in mind that adapting to the CI is a very individualized process.  Young children adapt faster because they are younger and their brains are more spongy to new information whereas a 27-year-old brain that was drilled over and over to adapt to the hearing aid is not expected to be very flexible. 

At my third mapping on March 19^th, Jennifer Yeagle reassures me that I’m on good pace to adapting to my CI after hearing of my tales for the past week.  But first, she gives me solid evidence by placing me in the audiology booth and conducting a test on my hearing using volume 5 of Program 3 (which I had progressed to and used for a couple days prior) based on my second mapping (before to proceeding with the third mapping).  I click on a button or raise my hand whenever I hear a sound or voice.  The test takes no longer than 15 minutes.  Jennifer gives me the thumbs up as I come out of the booth and shows me the audiogram when we get back into her office. 

For comparison to my hearing before, see the audiogram below.

Note how my hearing has improved since receiving the CI!  I’m now able to hear high frequency sounds for the first time!  This audiogram is clear evidence that the CI should be a boon to my hearing.  But a lot of work remains, as there’s a difference between hearing and discriminating sound!  As you can see, I'm not quite in the expected hearing range yet, but that should be achievable as my brain continues to adapt to the volume.  You may also notice that my hearing low frequency with the CI is not quite as good as it was with the hearing aids.  I'm assured that this is the case because the latest audiogram was only done after the 2^nd mapping whereas my brain's threshold for higher volume is increasing rapidly.  I expect my low frequency hearing to be at par or better than when I had the hearing aids by the time of my 4^th or 5^th mapping. 

Jennifer and I then proceed to begin the 3^rd mapping, which is, once again plays out just like the first two mappings.  I’m ready for more power so Jennifer cranks up the power.  Once we finish the mapping, Jennifer turned on my CI.  I instantly hear a very loud and annoying sound like a car or fan running.  I try to figure out what the sound is and ask Jennifer for help.  Jennifer cracks a smile and says it’s the fan in her office that runs all day long.  I had never heard the fan before and it was suddenly very loud.  Jennifer then works her magic on her laptop and manages to block out the fan noise while maintaining the same level of volume (by minimizing the IDR or range of background sound).  This is another reason why I wanted the cochlear implant – the ability to better manipulate sound. 

Jennifer proceeds to do some spontaneous testing on me while covering her mouth so I cannot read her lips.  Her tests are quite similar to those that I did on the computer the day before.  Jennifer reads two sentences ten times.  I'm instructed to identify whether the sentences are the same or not.  I answer all 10 correctly, which is definitely a good sign of progress.  But note that I could not discriminate a word of the sentences.  Instead, I am able to distinguish each set of sentences by syllables and tones.  Jennifer then proceeds to give me two sets of words ten times.  I answer 8 of the 10 correctly.  But then she does another set of 10 where the words are exactly the same except for a different vowel in the middle.  I score 6 of 10, which is not bad given that I’m picking up the consonants much more strongly than the vowels at the moment.  It is frustrating not to be able to hear the words exactly as they are, but one step at a time. 

Before Jennifer sends me off, she once again programs my three programs to be identical except for the volume to be incrementally greater.  She sets larger differentials in volume between the 3 programs in anticipation that I will not return for another month for my 4^th mapping.  It’s now been a week since my 3^rd mapping.  I’m already using Program 2, as my brain has easily adapted to the volume in Program 1. 

Here are a few observations that I have experienced in the past week since my last mapping:

• Water (out of faucet, toilet, etc.) runs very loudly (I could hear it before, but it’s much louder than originally thought).
• I walk loudly (I knew this before, but not this loud!  Can now especially hear my keys jingle as I walk).
• The keyboard and mouse I’m using are much louder than originally thought. 
• I can now hear slight pings/beeps when typing on my pager.
• I can now hear slight pings/beeps when changing channels on TV.
• Reading the newspaper or books is much louder than I thought. 
• The blinker signal in the car is very loud now (this should be good news for passengers, especially my college baseball teammates, who would give me a hard time for sometimes leaving the blinker on a bit too long).
• Doing the dishes is now like listening to firecrackers. 
• Last week, I could hear the doorbell ring even though I was half-asleep and TV volume was on!
• I often think I’m hearing ghosts as I pick up a lot more sound, but have no idea where it’s coming from yet.

Overall, I'm guardedly happy with the progress of my CI despite some frustrations, which are mostly attributed to my extremely high standards and envy of those lucky folks who immediately adapt to the CI.  I (and others including my audiologist and key supporters) remind myself that it will take time.  Patience is virtuous.  I'm especially pleased that I'm not too sensitive to a lot of the new sounds that I'm hearing (or the old sounds that I'm hearing much louder than ever).  My sensitivity to hearing was a concern prior to getting the cochlear implant because I tend to dislike loud noises.  A lot of the sounds that I was annoyed with before don’t seem so annoying – perhaps for two reasons: (1) I’m more open-minded to sound these days as I learn to listen all over again, and (2) the CI manipulates sound better whereas hearing aids is like having a bullhorn in my ear.  I'm also fairly satisfied with the fact that the batteries has hardly been an issue for me, especially since the HiRes software really maximizes the life of the batteries. I manage to get through every day with one extended life battery and one standard battery since it lasts me a minimum of 16 hours.  Hence, I'm only required to change the battery once during midday.  However, the battery life could be better and it'd be much nicer to travel without my battery charger set (which requires a bag the size of a toilet kit).  Short battery life is one of the key issues that impedes folks from selecting to go with the Clarion BTE in comparison to other CI options. 

Sarah, like my mother, is fairly concerned about my not usually responding to calls from across the room.  Nevertheless, Sarah is thankfully very understanding of the patience required to fully adapt to the CI.  She has already been very helpful, especially since it's interesting to compare what we can or can't hear.  I notice I can hear a bit more sounds (and louder, as well) now, but Sarah clearly recognizes or discriminates the sounds better than I can since I, again, have not fully adapted to the CI yet.

For those of you who are wondering, I have only worn my hearing aids a very select couple of times, especially to participate in critical conversations where I would not be able to understand the person I'm talking to by strictly lip-reading that person (and hearing delayed beeps at the same time!).  Per the advice of my audiologist and other supporters, I choose not to wear my hearing aid as much as possible in order to optimize my adaptation to the CI.  I will continue to wear my hearing aids very selectively, especially at work until I am comfortable using the CI alone.

That’s all folks… for now.  Stay tuned for updates in near future.  In meantime, I will be going to auditory therapy very soon. 

Next  (Entry #4: April 11, 2003 - one month after CI activation)

Back  (Entry #2: February 4, 2003 - six days after surgery)