2nd Cochlear Implant: The Decision Behind
On February 7, 2018 I will get a second cochlear implant. It’s not a decision I take lightly. I have had one on/in my right ear for more than 18 years. It has given me so much of the life that I enjoy today. Deciding to get the second ear done has been a long process - many say my decision is long overdue.
Background
When I got my first implant in 1999 it was actually discouraged to get a second implant. At least, that was the impression I got. With the rate of technology change and the potential of stem-cell breakthroughs, it seemed wise to leave one ear open for a different type of solution in the future.
I did extremely well with the implant. I was completely mainstreamed in school, conversations in quiet environments were extremely easy even when not facing the speaker, etc. I did so well that I never thought it could get reasonably better. I also stopped advocating for myself and had a rough stretch in my later high school and early college years, a time in which my personal and professional development came to a standstill. I could have received Advanced Bionics’ first BTEs (behind the ear) external device probably fifteen years before I finally did, but I was firmly in the camp of “if it’s not broke, don’t fix it.”
Jacob’s Ride in 2013
On April 3, 2013 I left the comforts of home and began six month, almost 11,000 mile bike ride, to all 30 MLB stadiums to raise awareness and money for cochlear implants. Advanced Bionics became the first and one of the most important sponsors of that endeavor. Some of their marketing people were concerned that I was still using a 15 year old body-worn processor, from the Platinum Series. They wanted me to be seen in a newer model known as the Harmony BTE (behind the ear) unit. I was a little reluctant to try something new, but I had to quickly realize that the Harmony BTE with the in-ear T-mic was the biggest leap in my hearing and speech comprehension in noisy environments in a very long time. In addition the benefits of the microphone placement, it was nice not to have the bulky processor in my pocket or on my belt.
My life was dramatically changed during those six months. The Ride’s purpose was to help others get the gift of hearing. But I was getting the gift of so many others’ shared experiences. In addition to learning and strengthening my self-advocacy skills, the people that I met turned me on to using a t-coil program to talk on the phone and got me interested in streaming devices for the first time.
The single most frequently asked question (by a considerable margin) that I received was; “When are you getting your second implant?” I slowly ran out of any good informed logical answers. After the 2013 Ride, and the subsequent Rides since, the same question has been repeated. Every event I go to, big or small, I get asked about it. Since I have stayed active in the hearing loss community, I have been exposed to a lot of literature and conventional wisdom regarding bilateral implants. It was in talking to bilateral users at the five Hearing Loss Association of America Annual Conventions (2013-2017) that I really had to concede that I ought to get my other ear implanted. But, again, I did not take any action. I was busy with my life, friendships, education and career; the issue did not seem urgent.
There were two moments that really made me take the leap and call Johns Hopkins to pursue this in earnest.
While I was doing an educational internship at The Listening Center at Johns Hopkins (Fall 2016), my former rehab therapist, Deborah Bervinchak did most of the planning of my schedule. The bulk of my time was sitting in on audiological sound mappings, activations, and listening therapy. Deb definitely had an underlying motive when she had me sit in on a particular rehab session. The patient had a similar story to mine. He/she (privacy concerns - not divulging gender) received their first implant a child and did extremely well with it for a very long time. Then as a late teen/early adult, the patient received their second implant. He/she hated it at first. It had been so long since that side of the head was processing information as sound. What struck me the most though, was even though the patient still tested extremely poorly compared to the older implant (something like 6% versus 92% sentence comprehension), wearing the two implants together boosted comprehension to over 96%. Even though the patient was making slow progress on one side, with both sides of the brain working together, the overall ability to hear and quality of understanding was better. This is in addition to the nearly automatic benefits of stereo sound; localization and hearing in noise.
Even after that revelation, I did not do anything about getting another implant. I started training for a new position within my company, and as always, life was generally busy. But then I got a second wakeup call.
2017 Visit to Durham - Duke University Medical Center & MEDEL
In early June 2017, I traveled to Durham, NC. There, I met with the cochlear implant Team at Duke University Medical Center and the management team at MEDEL - North America. Of course, we took in a Durham Bulls baseball game, and had a Jacob’s Ride event at the ballpark. It was lots of fun and I made many new friends. Doctor Howard Francis (Duke, formerly from Hopkins) and I were honored to ride our bicycles around the warning track as we were introduced to the evening crowd.
During my meeting with MEDEL - North America, I met Johanna Patzold. She has a perfect hearing in one ear and an implant in the other. The conventional wisdom that I had heard was that in such cases, the brain will not adapt well to the implant because of how alien it is compared to natural, acoustic sound. Cases like this are not recommended by the FDA, and it would be extremely difficult to get it covered by insurance. But this woman worked in theatre, and had a strong need for localizing sound.
I was incredibly fascinated with her story. As one who has heard electronically for so long, I am often curious as to how normal hearing sounds. Everything sounds so normal to me because of how well I did with my first implant and my particular hearing loss history. It sounds perfectly normal, just as it should be. But I know that there is no way it actually is normal. So, the opportunity to talk to someone who could literally compare an implant to perfect hearing was exciting. When Johanna takes off her implant, she has perfect hearing in her other ear. If she uses an earplug over her normal ear, then she can hear the pure electronic stimulation (well, her brain’s interpretation of it, anyway).
What Johanna told me was most instructive, and probably changed my life forever. She said she didn’t like it at first, that when she isolated the implant, she couldn’t tell the difference between a saxophone and a piano.
But with a lot of training, work, and time, she now prefers music with her implant on rather than without it. She says that her appreciation of music is incredibly enhanced, not so much by the implant, but by having two ears. I never thought of that before. She compared it to a TV going from “black & white” to “full color”. Her perspective was, that even though it is different, two ears are so much better than one.
I love music. I have enjoyed music the entire time I have had an implant. Like anyone else, my music tastes have changed over time. I have to read lyrics to songs that I don’t know very well, but that is a speech comprehension problem more than a music appreciation problem. I know that there are many implantees out there that never truly enjoy music like they used to. But I love music. To anyone curious, my favorite bands/artists today are Old Crow Medicine Show, Hank WIlliams Sr, The Beatles, a lot of other classic rock, Eminem, etc.
To be told that just by having another ear to hear with will enhance my appreciation by so many levels made me eager to get a second implant. What really floored me was that the impetus for this was coming from someone who had perfectly normal hearing in one side.
Getting the surgery scheduled was a really quick process for me. My father remembers the large number of pre-surgery required appointments and tests in late 1998 & 1999. But this pre-surgery screening routine, for the upcoming implant surgery, was really quick and easy. My audiological consult already happened when I went in for my previous reprogramming with Jennifer Yeagle at The Listening Center at Johns Hopkins. We’ve already known for a long time that my other ear was a candidate. I think the only additional audiological test was to put a hearing aid in the deaf ear. I scored a perfect 0% on everything even with the hearing aid! Yay!
I had a minor problem with my device about a month later and wanted the device checked out by my audiologist. She took the opportunity while I was there to do the device selection appointment. I am sticking with Advanced Bionics on my second ear. I have always been really happy with AB’s support services. It is strongly discouraged to have two different brands.In that appointment, I was awarded a certain number of “points” and I was able to choose which accessories and devices I am getting.
My otolaryngology appointment was a breeze, and I was vaccinated for something at the same time. The only other appointments I have had to make is to get the CT scan at my primary care doctor for the surgeon, and an upcoming pre-surgical screening, which is also at my primary care physician.
Looking Forward
I’m slightly nervous about the surgery. I have been through a lot of physical pain before in bicycle accidents, surgeries, etc. But I don’t exactly know what to expect. I know I’ll be under anesthesia but I still don’t like the thought of scalpels and stitches. But I ought to relax, because I’ve been through this before, and I know it’s not as painful as some of the other stuff I’ve been through. I was running around and playing within 2-3 days of my first implant surgery. The surgery now involves a much smaller incision as well. I’m not looking forward to missing work, and especially not looking forward to taking time off from powerlifting. I can’t lift anything more than 25 pounds after this surgery in order to avoid pressure in the head.
The only real anxiety for this surgery was the amount of time it took to get final approval by my insurance company. Any additional delay would have caused real problems in rescheduling my time off work. Thankfully, the approval came just in time.
I am incredibly excited for my activation date more than anything. I can’t wait to hear something on my other side. I know that it will be different and challenging but I can’t wait. It will be important to not get discouraged and to keep my expectations in check. Now that I am 28, I need to understand that progress will happen in months and years - not days and weeks. The important thing is to keep working at it and practicing.
One thing that seems kind of funny, even now (since I’m writing this before my surgery), is that my old implant is such a profound part of who I am. I put it on sometime in between my first and second cup of coffee in the morning. I feel comfortable wearing it, and am not embarrassed at how it looks on my head or anything. My hair is short and it sits proudly on my ear. When I imagine my second implant, it seems so wrong. Am I going to look weird? What will people think of someone with not one, but two devices on their head? I’m sure I’ll feel better about it in time.
Everyone with hearing loss faces this kind of decision in their own time.
For me, the time is right to take this next step in my journey to regain the hearing that I lost as a 9-year old boy.
