Bilateral Cochlear Implants and Cochlear Implant Failures: Interview with Arlene Romoff

Bilateral Cochlear Implants and Cochlear Implant Failures: Interview with Arlene Romoff

February 21, 2013 Interviews

Douglas L. Beck, AuD, spoke with Ms. Romoff about her book, Listening Closely—A Journey to Bilateral Hearing, as well as all things cochlear implants.

Academy: Good morning, Arlene. Always a joy to catch up with you!

Romoff: Thanks, Doug. Good to chat with you, too!

Academy: I'd like to start by pointing out we're thousands of miles away from each other and although this conversation is occurring over a crummy, distorted telephone line, it's even more interesting because you're listening to me through your cochlear implant—which is still remarkable, although many of us have become somewhat accustomed to this amazing state of the art.

Romoff: I agree, Doug. Not only are those of us involved with cochlear implants enjoying tremendous success, another thing that amazes me is that so many people across the globe still have no idea what cochlear implants are or what they can do—even in 2013!

Academy: Yes, that's right—and as I like to point out to students, the first cochlear implants occurred more than 50 years ago in 1957, and the first cochlear implants in the United States were implanted by Dr. Bill House in 1959. So, although, the technology has changed rather dramatically, cochlear implants have been around for more than half a century!

So Arlene, if you don't mind, let's go through a brief sketch of your early experiences with hearing loss, and we'll work our way forward to your bilateral cochlear implants.

Romoff: Sure, Doug. As you know, I grew up with normal hearing and I started to lose my hearing in my late teens.

Academy: And the cause of your hearing loss was never actually discovered, was it? If I recall, it was a fluctuating, progressive, sensorineural hearing loss, with no known cause?

Romoff: That's right. They really don't know what happened, but I lost more and more hearing through college and at age 23 years I started to wear my first hearing aid. And, frankly, as it progressed, I had the opportunity to really experience every phase of hearing loss. I had a mild hearing loss, moderate, severe, and profound, too. Each degree of hearing loss had its own challenges and as my hearing degenerated, I had to learn to use new hearing aids, assistive devices, and communication strategies, too. So I became an expert in using these tools and in coping with hearing loss—sort of by default, but totally out of necessity!

Academy: And then in 1997 you got your first cochlear implant?

Romoff: Exactly. And even in 1997, cochlear implant technology was still developing and changing rapidly. And Doug, as you know, I did a lot of research and I took responsibility to make sure I knew what a cochlear implant was and what each of my options were, and what they included. I wanted to know everything about the devices before committing, and once I had completed my "due diligence," I proceeded.

Academy: And I should mention that the time between when you first started wearing hearing aids until the time you received your first implant was about 25 years or so.

Romoff: Yes, that's right. And when I got the first cochlear implant, I wrote my first book to detail that journey and that experience. Of course, even fewer people knew about cochlear implants in 1997—and it seemed so important for people to have a first-hand, personal accounting of the experience.

Academy: Absolutely. Your first book was titled Hear Again – Back to Life with a Cochlear Implant. And frankly, I recall when I read that book years ago, it really was a sincere and authentic story and I still recommend that book for people who are going through the experience.

Romoff: Thanks, Doug. I appreciate that. That book gave a lot of people the courage to pursue a cochlear implant.

Academy: And so even though you've been through it all—the second book introduced some additional amazing experiences, such as what happens when your cochlear implant fails!

Romoff: Yes! Almost 11 years after receiving my first cochlear implant, everything was going great and then the first cochlear implant failed! It started to work intermittently and very soon it didn't work at all and I was thrust back into sudden deafness, and it really was devastating emotionally.

Academy: Did you feel "better prepared" for deafness the second time, as you'd been through all of this previously, or was it just totally different?

Romoff: That's a really interesting question. I think becoming deaf suddenly was much worse. It was very traumatic—and to me, that meant it was time to start writing again. After about five days without sound, I felt as if I were in solitary confinement—"losing it." It was absolutely terrible, even with all my coping skills. And so again, I wanted to document my experience as things progressed, not after the fact, and so the second book was born!

Academy: And so you quickly decided to have a new cochlear implant and that cochlear implant was replaced within four weeks—which was very quick, and that brings us to 2008.

Romoff: Yes. And in some respects, it was sort of a fortunate misadventure, because the newer revised cochlear implant is actually better than the original with regard to speech perception and music. I should also say that the second surgery was smoother, quicker and the anesthesiology experience was much better than the original surgery.

Academy: And then you considered the idea of getting a "second" cochlear implant on the other side, which is actually your third cochlear implant!

Romoff: Yes, that's right. I really couldn't stand the thought that my revision cochlear implant might also eventually fail, and that I would again have to face deafness. So in some respects, I decided to become a bilateral cochlear implant user to do everything I could to avoid ever being deaf again. And so about six months later, I did receive my bilateral cochlear implant, and it's been great.

Academy: And I know we're just about out of time, but please tell me, what are your thoughts as to the benefits of bilateral cochlear implants, as compared to unilateral cochlear implants?

Romoff: Well, it's really a day and night difference. Let me say that when I became a bilateral cochlear implant user, it truly astounded me—and I had already been using a cochlear implant for more than a decade! Adding the second ear allowed me to have better hearing for sure, but the ability to do well in casual social situations, particularly with background noise, is tremendously improved. So I would say as a bilateral cochlear implant user, I now have "socialization" back. I'm far more relaxed, and that wasn't the case for me when I only had one cochlear implant and had to contend with a "better side."

With bilateral cochlear implants, I have a good idea where the sounds are coming from. I can "localize" and that helps me know where to focus my attention, and so I do much better in changing environments. But it did take some time for my brain to adapt to the new sounds from both sides!

Academy: I whole-heartedly recommend both books! Your perspective and ability to express your thoughts and feelings and experiences via the written word is a joy. I think these books are very valuable for everyone involved with going through the experience of considering and obtaining cochlear implants to get the personal perspective you offer.

Romoff: Thanks, Doug. I appreciate your endorsement!

Arlene Romoff is the author of two books about her experiences with cochlear implants. She is also a dynamic speaker and the past president of the Hearing Loss Association of American (HLAA) of New Jersey. Learn more about Ms. Romoff at her Web site.

Douglas L. Beck, AuD, board certified in audiology, is the Web content editor for the American Academy of Audiology.

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