Beginning my Cochlear Implant Journey

After taking the time to think things through, and discussing it  with Peter, family, friends and coworkers, I decided that I would get a cochlear implant on one ear. I called to make appointments for a cochlear implant evaluation at a couple of places.  February came around and my mom came to visit me.  I got to visit the cochlear implant center at the University of Virginia and Johns Hopkins.  I felt that Johns Hopkins was a better place for me to go  since it was closer to where I live and I felt comfortable with their staff.

University of Virginia Cochlear Implant Center: 

When we went to the University of Virginia Cochlear Implant center, we learned that there was a mistake made and that I did not have an appointment scheduled in their system.  They had to make some last minute changes and could only fit me in for a hearing test and a small consult with their ENT doctor.  We learned that the cochlear implant evaluation is as long as three-hours.  Mom was a little worried as my future appointment with Johns Hopkins was only an hour.  Being the wonderful advocate she is, she called Johns Hopkins to make sure everything was scheduled.  It turns out that I already had an cochlear implant consultation appointment scheduled with an audiologist but I also needed to got a CT scan done as well as an appointment with the ENT doctor in Baltimore at the Johns Hopkins Hospital. While we were waiting to be called back, mom went ahead and scheduled everything for me.  We wanted to get every completed while mom was visiting me for the week.

I was finally called back to do an un-aided hearing test and a tymponometry test to make sure everything was okay in the middle ear. Their testing booth was so big that mom, Peter and my “interpreter for the day”, Marla, got to all be inside the booth with me.  It was pretty hard apparently with other people in the room.  The audiologist put headphones on me and I had to stare at the floor so I didn’t get any signals from them when the sound was made.  After completing the hearing test, I was told that they could hear all those high frequency sounds.  Peter was telling me I should I have clicked the button multiple times just for the heck of it so that he didn’t have to hear those high beeps.  He said they were very loud and hurt his own ears. Funny thing is… I COULDN’T hear those sounds.  When the low frequency sounds were made, I was clicking the button constantly.  Those were the sounds they couldn’t hear, but I could!  We got the test results and were referred to the ENT department on a different floor.

I was called back to see the ENT doctor.  The ENT doctor was a little frustrated because he couldn’t make any recommendations without a full cochlear implant evaluation.  The reason why we couldn’t get booked in today was because there weren’t any time slots available for everything.  However, it all worked out because we still got to talk about the possibilities in getting a cochlear implant, what to expect, how the team works, and so on.  Luckily, mom brought my big, thick, 3 inch binder that has all of my audio testing since I was identified at 2 years old. The doctor was able to use some of these reports and shared that based on those reports, he COULD make a recommendation, but he really wanted updated testing.

Johns Hopkins Cochlear Implant Center:

The next day, I visited with the audiologist in Bethesda, Maryland to do the rest of the cochlear implant evaluation.  When arriving there, Dr. Cain was able to use my most recent audiogram and add additional testing that is required.  She took me into the testing booth where I sat in a chair, by myself this time!  We completed another tympanometry test.  Dr. Cain proceeded to do a specific test where I have to repeat different sentences.  I had to take out my right hearing aid and use my left ear only.  She gave me ten different sentences in different tones (male, female, and kid voices) that were projected from the speakers in the soundbooth.  I had to repeat the sentences the best I could, even if I could only repeat a word I may have heard.  After completing the first ten sentences, I had to take out my left hearing aid then put in my right hearing aid.  She gave me ten different sentences.  My mom said that she couldn’t watch me do this,  because it looked painful,  apparently.  I know that I was struggling really hard and trying my best to repeat what I could hear.  We went back to Dr. Cain’s office where she shared the testing results.  It turns out that I only successfully repeated one out of ten sentences with my left ear, and zero out of ten with my right ear.  

In conclusion, here’s what my audiogram looks like. Hopefully these two audiograms below help make it easier to understand the levels of hearing and what kinds of sounds are associated with each levels. It shows that I can only hear within the mild to severe range with my hearing aids.  Meaning, anything above the black line, I cannot hear or struggle to hear sounds. Anything below it, I’m able to understand the sounds. Without my hearing aids, you’ll see that I have a severe to profound hearing loss in both ears.  Again, anything above those lines, I cannot hear. Anything below it, I can probably hear them. I want to make it clear that just because I may be able to hear these sounds, I may not understand what the sounds are.  You'll see that the last two high frequencies, there are arrows coming out of the X and the O.  This is documented as "off the chart" which means, I have absolutely no recognition to high frequency sounds. 

Using my most recent audiogram and the test results, Dr. Cain was able to recommend me to the ENT doctor to complete the cochlear implant evaluation. We talked about the parts of the ear, how sound travels,  the audiogram and test results, the surgery process,  and therapy required after activation. She took out three demo kits of  Cochlear Implant brands to look  at and play with.  We explored the Cochlear, Med El, and Advanced Bionics cochlear implant products.  I was given a lot of information about the three different companies.  She also explained the timeline for the next couple of months.  She also explained that I would be able to hear within normal limits with a cochlear implant, which is a lot more than what I’m getting with my hearing aids alone. Lastly, she explained that once the surgery is completed, I will not be able to use my hearing aid again.  It is possible that the surgeon can preserve whatever hearing is left, but honestly, there’s really not much hearing left to preserve. 

A few days later, I had to get a CT scan done of my head.  This was a very quick procedure.  After completing my CT scan, my mom and I drove up to Baltimore, Maryland. I had to request an interpreter to be there for this appointment.  We met my interpreter and I’d like to call him “The Yoga Interpreter.”  I don’t know what the big idea was, but he was doing a bunch of yoga poses and stretches in the waiting room.  Can we say “awkward?”

There was so much paperwork I had to complete.  I was fortunate my mom was with me because there were a bunch of medical terms I was clueless about.  As I was completing the paperwork, the nurse came out to get me.  She was using sign language with me!  I was already impressed!  We went to our exam room where we waited for the ENT doctor to come in.  The doctor has an assistant and she came in to get everything started.  She looked into my balance system (which is located in the ear); this was weird for me.  She had me look directly at her nose while she shook my head to the left, then right, right again, then left. It was like a quick jerk.  After she did that, she said my balance seems normal! She asked me to stand up and put my feet together, cross my arms and close my eyes.  I did this and I wasn’t sure what was supposed to happen.  I opened my eyes and she said,  “Good! Now, put your right foot right in front of your left foot, cross your arms and close your eyes.” I was struggling to hold my balance and fell over as soon as I closed my eyes.  I then understood what she was doing.

Dr. Della Santina, the ENT doctor/surgeon, came in to discuss the results from the CT scan and continue with the evaluation.  Let me tell you something about this doctor-  he is a WONDERFUL doctor.  He came in with excellent manners, and sat down in front of me.  He looked at my mom and asked if she was hearing or deaf.  Mom stated that she’s hearing.  He explained that he would be sitting with his back facing her, not to ignore her, but because he needed to maintain eye contact with me since I’m the deaf patient.  My mom is used to this anyways, but this is the first time we’ve had someone explain their rationale as to why their back is facing them.

Anyways, Dr. Della Santina and I got to talking about my thoughts and reasons for a cochlear implant.  I shared with him my concerns and hopes from a cochlear implant.  He stated that based on my CT scan results, that my ossicles (3 bones in the ear), cochlea, and auditory nerve were in great condition and  “implantable.”   He explained the surgical procedure and the risks that may be involved with the surgery.  After answering all questions, the cochlear implant evaluation was done.  Even though I was leaning towards the idea of having one, I wanted to take all the information given to me and double check this was something I truly wanted to do.

Here’s the results from my CT scan:

As part of this process, I had to get a vaccine. Let me tell you, this nurse gave me a shot and it hurt so badly!  I should probably share the fact that I don’t handle needles very well. So everytime I get a shot or blood drawn, I’m a little excessively dramatic.  Apparently, I have to get a vaccine every 5 years if I get the cochlear implant.  Mom and I went home, sat down and talked things through.  We called my dad and brothers on Skype to explain everything.  I sat down with Peter and explained everything to him. I went to work the next day and saw a lot of my coworkers who are Educational Audiologists and Teachers for the Deaf and Hard of Hearing and talked to them.  I met up with some friends, or called them through FaceTime/Skype, and explained everything to them.  This gave me the chance to think and talk things through while I gathered opinions from everyone.  

I got to participate in varying sessions for each of the companies to learn more about their cochlear implant products.  Fortunately, I was able to join the audiologists I work with to some of these session and got points for it for my teaching license.  I met quite a few cochlear implant users, representatives and had the opportunity in asking them a lot of questions about the products.  I had a fun time researching and meeting new people.  I was able to determine that I wanted to go with Cochlear Americas. I'm already starting to feel involved with the Cochlear Americas family!

I can honestly say that there was just a small handful of people that weren’t thrilled with the idea of me getting an implant for personal reasons (including my own mother!), however I felt that I had a lot of support from everyone. I think my mom was just being a mother; nervous and thinking about the worse case scenario that could possibly happen during/after the surgery.  There was a lot to think about.  I had to think about the risks, the fact that this is irreversible, the extremely small chance that this may not work and so forth. But I was pretty optimistic.

After weeks and days went by, I decided to go ahead and have the surgery.  After figuring out a good plan and timeframe for this surgery, I called it in and the surgery was schedule for Monday, June 13.  I was already nervous but excited!