Spotlight on: Adult CI patient Randolph Jones

Part of this interview appeared in hear ME now‘s Spring 2015 newsletter. The entire interview is printed here, including how Randy has experienced listening to music since receiving a Cochlear Implant.

A Cochlear Implant Adult’s Story: Gradual hearing loss and several hearing aids later, Randy Jones received a Cochlear Implant. The ups, downs, and how he experiences sound in this interview

 

Randolph Jones

Randolph Jones

Please share a bit about your professional life.

I co-own a small business in Ann Arbor, MI.  We do research and development in Artificial Intelligence, creating software that emulates how people think in various ways. I’m involved in various parts of the business but the part I enjoy most is “I have a PhD in Information and Computer Science.
When did you become aware that you were experiencing severe hearing loss?

I am 52 years old now. I started having persistent ringing in my ears when I was a teenager. I don’t know if my hearing was “normal” prior to that, but I assumed it was at the time! In fact, aside from the ringing, I didn’t feel like I had any trouble hearing things or understanding people. I was also a musician. It wasn’t until much later, when I was in my late 30s, that I began noticing that I was asking people to repeat themselves more often. A hearing test revealed that my hearing in low frequencies was mostly okay, but my hearing got increasingly worse at higher frequencies. My audiologist explained that this was a typical pattern, and it made it more difficult for me to be able to hear and distinguish the consonant sounds in speech. I was told that I didn’t need hearing aids, but they would help me hear better. Hearing aids were expensive and not covered by my health insurance, so I decided to wait.

A couple of years later my hearing seemed to be even worse, and a test confirmed that things had indeed gotten a little worse. So this time I decided to get the hearing aids. The experience was amazing. I was hearing things I hadn’t heard for decades, like the “click” of the turn signal in my car and the birds chirping in the trees. There was a new “crispness” to everything I heard, because I was hearing the high frequencies again.

As time went by, this new crispness faded, and I realized my hearing was still getting gradually worse, even with the hearing aids.  After a few years, I got a new set of hearing aids to compensate for the increased loss of hearing, but I never again experienced that “crispness.” After a few more years and another set of hearing aids, a test confirmed that my hearing was still getting gradually worse. The following year, I asked to be tested again because it seemed like things had begun to get worse even faster. My hearing aids were turned up so high that everything was a little bit distorted, so they were not helping nearly as much as before. And I was starting to notice that even music was beginning to sound different from how I had remembered it sounding. Music has always been an extremely important part of my life, and in my mid-40s I had start performing in musicals in local community theater, so this disturbed me as much as my inability to understand speech well. An additional problem was that I telecommute for work, and so I participate in lots of teleconferences, in which I was having trouble understanding what was being said.

At one point did a Cochlear Implant become an option ?

This was the point at which my audiologist suggested that I might be a candidate for a cochlear implant. I was nervous but excited by the possibility. I went to the testing and discovered that I was indeed a CI candidate. What was the surgery and post-surgery recovery like?

When I went through the surgery, I was actually in the middle of rehearsals for a play. The performance happened before my implant was activated but my cast-mates were wonderful in helping

me play my part successfully with one non-functional ear. The surgery was a bit harder on me than I expected. I found myself needing to take a nap every afternoon for about a month, and it was difficult only being able to sleep on my left side for a week. But there were no complications and the healing progressed quickly. I had occasional blood in my phlegm for 2 or 3 weeks, but I understood this to be normal. The only other side effect I noticed was a new kind of ringing in my right ear (the implanted ear), which sounded like a sort of soft “pinging.” That began about 3 or 4 weeks after the surgery. I thought my implant may have somehow “turned itself on,” but I was informed that this is not possible. After my implant was activated, rehabilitation progressed rapidly.

It’s been four months since my activation, and I can’t say that everything sounds “normal,” but many things do and it gets better every day.  After a couple of weeks of practice, I was able to understand my co-workers better on phone calls. This improvement continued with practice and with new mappings, and I was soon up to 94% word recognition on word lists for which I had previously had only 30%-50% recognition.

What changes have you noticed since receiving a CI?

I have back that “crispness” that I hadn’t heard since the first time I got hearing aids, and this time the crispness seems not to be going away! I am hearing all sorts of noises and sounds that I think I may have never heard before, even when I was a teenager. It’s impossible to be sure. I can even spend an hour talking to my son (who tends to mumble sometimes) without asking him to repeat himself…this is wonderful for both of us! Music still doesn’t sound like it “used to,” but I am practicing listening to lots of songs, and it is getting better. I can play my guitar and sing along in tune, and one of these days I will audition for a musical again! In the meantime, I have been cast in three non-musical plays over the coming months, and everyone at work has noticed how much improved my participation is in teleconference meetings.

I am also enjoying again attending plays and comedy performances because I am no longer missing most of the words! After my implant was activated, rehabilitation progressed rapidly. It has been four months since my activation, and I can’t say that everything sounds “normal” but many things do and it gets better and better every day.

What changes have you noticed since receiving a CI?

I have back that “crispness” that I hadn’t heard since the first time I got hearing aids, and this time the crispness seems not to be going away! I am hearing all sorts of noises and sounds that I think I may have never heard before, even when I was a teenager. It’s impossible to be sure. I can even spend an hour talking to my son (who tends to mumble sometimes) without asking him to repeat himself…this is wonderful for both of us! Music still doesn’t sound like it “used to,” but I am practicing listening to lots of songs, and it is getting better. I can play my guitar and sing along in tune, and one of these days I will audition for a musical again! In the meantime, I have been cast in three non-musical plays over the coming months, and everyone at work has noticed how much improved my participation is in teleconference meetings.

I am also enjoying again attending plays and comedy performances because I am no longer missing most of the words! After my implant was activated, rehabilitation progressed rapidly. It has been four months since my activation, and I can’t say that everything sounds “normal” but many things do and it gets better and better every day.

Could you describe your experience of listening to music since your Cochlear Implant?

When my implant was initially activated, I came up with a way to describe what most music sounds like (keeping in mind that I listen mostly to classic rock and roll). If you’re familiar with the song “Do you feel like we do?” by Peter Frampton, there’s a solo in the middle where he uses a device to pipe his guitar’s sound through his mouth, so he can voice words, but use the guitar as his “voice”.  If you listen to that, but add extra distortion and an extra “wa-wa” effect, that is what music on the radio sounded like to me.  I also play guitar, and I found that I could hear enough to able to play and sing in tune (at least I think I was in tune!), but I couldn’t pick out individual sounds clearly enough to be able to tune the guitar (so I used an electronic tuner).  I have “trained my brain” by listening to lots of songs on the radio while I’m in the car or on my iPod while I’m working.  Over time, I am hearing music more clearly, but there is still a definite “buzz” (or “digitization”…I’m not sure how best to describe it) to most music.  I am beginning to be able to pick out individual notes in chords, though, and it feels like it is getting better all the time (if somewhat slowly).  Honestly, the fact that music still doesn’t sound “quite right” is one of the main factors in my decision not to get an implant in my other ear.  If I get to the point where music sounds “normal” again, I will consider very seriously getting the second implant.  At the same time, though, some parts of the music (such as high pitches) that I am hearing *better* than I did before the implant, and I am also able to understand the words being sung much better than I could before the implant.