Follow Up Appointments

The past few days have been rough and challenging trying to get used to wearing the cochlear implant.  I've had a few more follow up appointments following the activation appointment for mappings and to make some adjustments.

Appointment #2: Follow-Up: July 15

I continued to struggle with these squealing sounds and trying to get all these sounds to unscramble in my brain.  Things were incredibly loud!!  I still couldn’t differentiate and make out what exactly I was hearing. I was still getting  headaches. When I was alone, I was having my mini meltdowns.  In spite of the challenges, I knew I had to keep pushing through and keep the cochlear implant on.

Before heading out to my second activation appointment, I went out of my apartment first while Peter followed me.  I was ahead of him in the hallway and heard someone talking.  I looked back at him asking if he had said anything.  He looked behind him and pointed out that people from 2 apartment doors down from mine were the ones talking.  Amazing, right?!

Day #3 was when I went back for a second mapping with Dr. Cain.  This time, it was in Washington, D.C., at Sibley Memorial Hospital.  I explained to her all the squealing I experienced, all the new discoveries I’d made, how I was hearing a lot of higher frequency sounds over the lower ones, the struggles, and other things.  She recommended that I take my right earmold from my right hearing aid that I’m no longer using, and put in on the cochlear implant to help keep it in place.  She repeated the test from the first activation day where I had to listen to different beeps and inform her when the beeps were soft, comfortably soft, comfortable, and comfortably loud.  These beeps increased a lot since the first activation.  She turned off the first two electrodes to help reduce the squealing.  We assumed the squealing is really all the background and white noises happening around me.  We increased the frequency sounds and set up the different programs.  These programs are different settings that increased loudness for my implant.

After we programmed my processor and completed our second mapping, we decided to do the Ling 6 sounds test.  This is a test where the audiologist blocks her mouth using a speech loop, and makes 6 different sounds; it forced me to use my  hearing, without any visual support, to identify sounds of spoken language.  These 6 different sounds are isolated phonemes to target the low, middle and high frequency sounds.  The Ling 6 sounds are /mmm/, /ahhh/, /oooo/, /eee/, /shh/ and /ssss/.  Dr. Cain proceeded with this test, and although I got the other sounds mixed up, I identified /sh/ and /s/.  This was the first time I was able to do this!  In the past, I was never able to identify any of these sounds without my hearing aids.  With my hearing aids, I often was able to differentiate from /mmm/, /ahhh/, /oooo/, and /eee/ but never /shhh/ and /ssss/.  With the cochlear implant, now it’s the opposite!  We allowed Peter to complete the test with me so he could practice with me at home.  When he completed the test with me, I got all 6 sounds correct! I was shocked!  Dr. Cain shared with me that things are heading really smoothly in the right direction.

I learned that my cochlear implant is probably set up at 25 decibels which is within normal limits (visual support and explanation is posted in blog #6: Beginning My Cochlear Implant Journey). We haven’t done a hearing test in the testing booth yet.

After my appointment with Dr. Cain, I went out to my car.  I looked around for this roaring sound that I heard,  thinking it was a motorcycle going by.  Peter pointed up to the sky at a plane.  I’ve never heard this plane sound before! It wasn’t what I thought a plane sounded like.  I also started to hear these high beeps.  I looked around and discovered it was the birds.  It didn’t sound like birds at all.  I’m constantly looking around trying to make sense of everything, but it’s hard when everything sounds the same!   

That evening, I decided to test myself using the microwave.  I prepared my dinner and popped it in the microwave for about 2 minutes.  After starting up the microwave, I went into the living room looking out towards the balcony, facing away from the kitchen. I could hear the microwave making noise.  I’m not sure I can explain what exactly it sounded like, but it wasn’t its usual humming sound that I’m sure most of you are familiar with.  I finally heard a DING! I looked at the microwave and it was done.  This is the first time I’ve heard the microwave beep at a distance and without counting down the minutes. More than anything, I was excited that I could hear it from the other room.  I wonder if I’ll be able to hear these sounds at a distance in the future with the cochlear implant.  

We went to Annapolis the next day to spend time with some friends.  Before meeting up, Peter and I walked downtown.  I kept hearing this clicking noise thinking it was the key ring on my bag but it wasn’t.  I kept walking and still heard CLICK, CLICK, CLICK, CLICK…. I looked down and realized it was my shoes hitting the ground.  I kept looking around and asking what sounds were.  I’m wondering if he still has patience for me asking a lot of questions!  We met up at the restaurant and they were sitting in front of a singer playing his guitar.  This meant all I could hear was this incessant, chaotic sound while trying to hear and make sense of everyone else. Everyone and everything still sounded distorted and confusing. I was also wearing my hearing aid to help. I was overwhelmed  I got a headache. I wasn’t really involved with anyone or any conversations.  I looked around at the boats going by and enjoyed my crab dip. We were there for a couple of hours, and then we decided to leave.  We stopped  by a few shops on our way home.  We were at this one store and while I was looking around, I kept hearing a ringing noise.  I scanned around the store and saw that a little kid was playing with crystal wind chimes.  I walked towards them, the ringing became louder.  I grabbed Peter and walked him over to the wind chimes and I told him that I could hear it! I swear! I find myself like a little kid discovering sounds!

When returning to the place we stayed, I crashed and took another nap before heading back out.  I decided that night that I wanted to go out without using the cochlear implant. As much as I preferred to utilize only my hearing aid, it was still pretty hard to hear with one good ear. Everything seemed like a lose-lose situation for me when I was in the hearing world with little to no sign language support.  I faced the challenge of hearing with one ear, or being completely deaf, or wearing the implant with or without the left hearing aid and hearing a bunch of noises that didn’t make sense to me.  I wasn’t truly enjoying myself at all. I just wanted to be back at home by myself or with a group of people who use sign language.  Peter tried his best to sign at times, but he’s still learning!

As the next couple of days went by, I continued to increase the volume.  I provided myself with some therapy by listening to familiar songs without the lyrics, watching some of the news on TV, and listening to people talk, including my own voice.  I practiced reading some things out loud to listen to myself.  The more I didthis, the more clear my own voice became.  It sounded like I was listening to my own voice on tape.  The squealing decreased and sounded like  listening to white noise on tape, so it was like  trying to make sense of sounds and voices on top of the white noise.  It was still frustrating, but nothing compared to my frustration a few days ago.  I found it harder to watch TV shows compared to the news, because the news had less background noise than the TV shows.  Peter continued to practice the Ling 6 sounds with me.  I was still mixing up some of the Ling 6 sounds, and I still require more practice with them.  I became frustrated doing this test because I wanted to get them all right.  All the sounds that I hear are starting to sound like they are echoing in my head.      

Appointment #3: Follow-Up: July 19:

July 12 marks the 7th day since my activation date: ONE WHOLE WEEK!  I have been wearing my cochlear implant alone as much as I can.  The only time I’ve worn my left hearing aid was while I was teaching.  This helps me become comfortable hearing through the implant and forcing my brain to work harder.  Prior to my appointment, I was prepping dinner in the crockpot.  Peter was getting my attention and was shaking my hand really fast.  I learned that my bracelets were making a ton of noise.  I glanced down at my wrist and smiled.  Peter smiled, too and continued to shake them. We headed out to Bethesda.  On the way there, we put on my Taylor Swift CD.  I’m really familiar with her songs as well as the lyrics.  This was a great way to practice some listening skills.  My sound discovery of the day was what songs sounded like- all the singing sounds like Alvin and the Chipmunks, but I can’t always make out the words.  I don’t hear a lot of musical things.  The drums sound like the audience is clapping along with the beat and sometimes high heels walking down the hallway.  We decided to do the Ling 6 test while I was driving.  I knew this would be challenging because I could hear the car running and had to focus on my driving.  Peter proceeded to give me a couple of Ling 6 sounds and I got 7 different sounds correct consecutively.  I was feeling pretty impressed with myself!

After arriving,  Dr. Cain was really excited to learn about any new sound discoveries over the past couple of days.  I shared with her my discoveries and she shared that things are really heading in the right direction.  We discussed about the 6 Ling Sounds test; she actually informed us that there is a 7th sound, /silence/.  Often time, most of us are familiar and can figure out the test with the 6 different sounds, but silence can help figure out if we can here the sounds or not.  She wanted to do a pure-tone hearing test in the sound booth.  This is a test where I listen for  beeps at different frequencies and volumes.  While I was sitting in the testing booth, I found that my breathing and the clicking the button was louder than the beeps.  I held my breath a couple of times in order to hear the beeps.  Sometimes, the ringing in my ear made it hard to hear some of those beeps.  I looked through the glass of the testing booth and saw that Marla and Peter were discussing how high the beeps were.  

Dr. Cain shared the test results with us.  We were all shocked!  Often, the first time a cochlear implantee gets their hearing tested in the booth after activation, they  score within the moderate range.  My first test  results were within normal limits! I swear I could see Dr. Cain’s eyes become watery.  This was excellent news!  I was feeling really proud of myself.  I explained to Peter and Marla my audiogram before the cochlear implant surgery and where my aided results were.  It’s amazing seeing the gains I’ve made in a week. 

Even though that I scored in the “within normal limits” range, I still cannot make sense of things including the sounds.  What’s marked on the audiogram are the beeps that I was able to detect in a quiet environment. This is another misconception that most people have.

After discussing the results of the audiogram, Dr. Cain completed another mapping test.  Again, I had to count the beeps, and then listen to them become louder until I was comfortable with the sounds.  We programmed both processors; we will always program the processor I’m currently wearing as well as the back-up processor.  When the processor was turned back on, everything was even  louder than before.  I liked how Dr. Cain gave us some extra time in the room to chat about things in order for me to get used to hearing at a new level.  We discussed many things about cochlear implants, including audiograms, perspectives of implanteess, different modalities, etc.  It was a really great appointment!  

It is expected that in the next couple of weeks, I’ll continue to experience hearing all the white noise, distorted sounds and chipmunk voices.  My brain will slowly start to make sense of everything.  Each day, the amount of frustration and tears decrease; I continue to increase the volume and slowly change the program settings.  Each time I adjust the program setting, it becomes louder.  I continue to face a lot of challenges, especially when I expand my time using the cochlear implant only. I still rely on any visual support possible; making sure you make eye contact while having a conversation with me, using sign language as much as possible, captioning, etc.  I love having my left hearing aid in as it helps my right side make sense of what I’m hearing.  However, if I don’t allow my brain to work hard using the cochlear implant only, it will take a longer time to really get used to wearing the implant.  The squealing is starting to slowly decrease and the voices around me are slowly starting to become clearer.  Everyone sounds like squeaky mice or they have a helium voice.  Here’s to hoping that I continue to have patience and things will continue to get better with time.  It’s important to think in weeks, not days.