I met Janet just after she received a cochlear implant three years ago. There was a genetic component to her hearing loss. Her brother received a cochlear implant before she did.

She is an intrepid personality who refused to give up even as she was struggling to get the best results.

Activated with a Cochlear Nucleus 6 and wearing a ReSound hearing aid in the other ear, her bimodal hearing was never optimal. I believed at the time, she would eventually opt to get a second cochlear implant.

As her hearing in the HA side declined she was ready.

I asked her to sit down with me to talk about her experiences and her decision to go bilateral.
She also shares her experience with tinnitus and how receiving the first cochlear implant had an effect on it.

Transcript

Voiceover: Cochlear Implant Basics is a site for candidates, recipients and their families and friends. If you or a loved one is profoundly hard of hearing, newly deaf or have experienced sudden hearing loss, we are here to share our stories and tell how receiving a cochlear implant can be a life changing event.

Voiceover: This site is not medical advice nor is it brand specific. Within these podcasts and videos, you will meet recipients who faced hearing loss situations and hearing aids could no longer provide comprehension of speech or music. They share the stories of how they lost their hearing, their struggles with growing isolation from their family and friends, their inability to compete in the world of business, their difficulties of navigating air travel without hearing, how the joy of music disappeared, and the panic of not being able to use a telephone to contact 911 to get aid for a loved one.

Voiceover: They will talk about their fears and the reason they procrastinated to get a cochlear implant. And the reasons they moved forward. How receiving a cochlear implant changed their lives and the lives of those who surround them. You will meet audiologists and surgeons and those who support the deaf and hard of hearing communities.

Voiceover: Welcome to Cochlear Implant Basics.

Voiceover: Reminder: Cochlear Implant Basics is not offering medical advice. Please consult your own healthcare provider.

Richard: Janet received a single cochlear implant three years ago. As with many bimodal recipients, with time her hearing aid side has progressively lost hearing, and she is now a candidate for a second cochlear implant.

Richard: There is a genetic component to her loss. Her brother received a cochlear implant first, which encouraged Janet to get out of isolation. I asked Janet not only to describe her experiences, but to talk about the reason she’s moving to go bimodal. Janet also talks about her experience with tinnitus and how a cochlear implant has helped.

Richard: This interview was intended to be in two parts. I will sit down with her again a few months after she has activated, to talk about her new experience of hearing in stereo. This is her story.

Richard: Let me ask you a little bit about your hearing loss. What caused it? Do you have any idea?

Janet: Well, I know I have noise damage, and it’s part hereditary. I worked with power tools, so I had a lot of loud noises. And at the time, they didn’t have any noise stoppers. And loud music. But I think most of it’s hereditary.

Richard: So when did you start to wear hearing aids? At what age were you then?

Janet: I was in my forties. I guess about 20 years ago. And I was at work and people were starting to tell me, “Janet, you can’t hear.”

Richard: Wow.

Janet: Yeah, I’m like, “I’m fine. I’m good, really.” But then I started to notice that I kept saying, “What?” a lot.

Richard: So what did you then? What happened after that?

Janet: Well, I was a counselor, so I was dealing with people. My boss told me, “Janet, you have to get hearing aids.” Well, I wanted to keep my job, so I got one hearing aid and it helped. I could understand people, my clients could talk to me, I could hear them. I guess about five years later I couldn’t hear as well.

Richard: So it was progressive. It got worse progressively.

Janet: Yeah. It was slowly getting worse.

Richard: You have a brother who also had a hearing problem, so it was hereditary.

Janet: Hereditary. My father had a hearing problem, my cousin has a hearing problem.

Richard: So it was all there before.

Janet: Yeah.

Richard: Okay. So your boss was supportive?

Janet: Oh yeah.

Richard: Your clients were there. But eventually one day you realized …

Janet: I didn’t hear them. And that’s not really conducive to counseling.

Richard: No, not at all. So how did you deal with the telephone? What was going on there?

Janet: I just said, “What?” A lot. And, “Could you speak up, please?”

Janet: But basically, I said, “What?” A lot.

Richard: So tell me about the day you realized you had to stop. How did you feel that day? You realized at some point you couldn’t do the job anymore. How did you feel that day?

Janet: How did I feel? Well, it was kind of like okay, this is what you got to do. I just did what I had to do. I got angry because I really didn’t want to not hear. And I didn’t want hearing aids. And it was a vanity thing, too. I really didn’t want them.

Janet: But I had a coworker and he had two hearing aids, and he seemed to hear where everything fine, you know? So I said, “Okay, this is what I have to do.”

Richard: That was the motivation to move forward, was the co-worker?

Janet: Yeah.

Richard: All right. So that was a great influence to get your hearing aids, and your hearing continued to deteriorate. At what point did you consider a cochlear implant?

Janet: After I retired and we moved to Florida, that’s when I got my second hearing aid. And after about five years of being here I guess, maybe four years, they weren’t working anymore. My brother just got a cochlear implant you know, and I’m looking at him like, “You’re crazy,” you know? Yeah. “You’re out of your mind. Why are you doing this?”

Janet: And I watched him go through the process, and after his surgery, he got activated. He could hear. I mean, my brother was … I can’t say he was worse, whatever you want to say. His hearing was more …

Richard: Profound loss?

Janet: Yeah.

Richard: Okay.

Janet: And then my husband kept saying, Janet, your hearing’s getting worse. So I decided maybe this is what I need to do.

Richard: What did you do then? What steps did you take at that point?

Janet: Well, we have a friend in New York who wears two hearing aids, and he recommended somebody to me to go see in New York. It turns out that that doctor wasn’t in New York anymore, but he was down here in Florida.

Richard: Who was that?

Janet: Dr. Wazen . He came from New York, from Columbia Presbyterian, which is one of the best hospitals in New York. So I went to see Dr. Wazen and I said, “I want a cochlear.”

Richard: Okay.

Janet: He said, “It’s not that simple.” I said, “What? I’m deaf. I can’t hear anything.” He said, “We got to do testing.” It didn’t take them too long to determine. It’s like really, really needed one. And what is it besides cochlear? There’s something else.

Richard: BAHA.

Janet: Yeah, it wasn’t good for me.

Richard: No. BAHA was not going to work for you. You needed a cochlear implant.

Janet: Right.

Janet: Well he determined that. And I said, “Okay, let’s go through with it.” And we did.

Janet: And when they activated me, I was in shock.

Richard: Tell me about the activation day. What was it like?

Janet: I was in shock. I was like, wait a minute, this can’t be right. You know, cause everybody sounded like R2-D2, very mechanical. So I was like on the verge of tears. I can’t live with this. I really can’t. But it got better.

Richard: How long did it take for it to sound a little better for you?

Janet: Not long. A couple months.

Richard: Wow.

Janet: But then I got a sinus infection. And I don’t know what it did, but it was never the same again. I can hear, I can hear pretty well, except I still have problems in restaurants. People who can hear tell me they have the same problem.

Richard: Normal people hearing have-

Janet: Right, right.

Richard: Problems at restaurants.

Janet: But I think it’s more exaggerated for me, because I hear everything all at once. I’m learning to filter. And hear things differently. It’s a process, the whole thing is a process. But I was wearing a hearing aid in my right ear, a ReSound, which works with the Cochlear. And it kind of balanced things out in the beginning, but at this point it’s not working anymore.

Richard: So you’re having a progressive loss in your hearing aid ear?

Janet: Right. It just makes things very shrill.

Richard: So there’s less comprehension in your hearing aid ear now and that’s what’s causing the problem. So you’ve considered getting a second implant for that ear, right?

Janet: Right.

Richard: Three years later is a long time for a lot of people. So I’d like to know what’s going through your mind right now? About the second one?

Janet: Well, I notice myself leaning in with my left ear to hear everybody because I can’t hear anything in this ear. And it’s just like before. I’m getting half of everything.

Richard: Does your brother have two cochlear?

Janet: No.

Richard: He has one.

Janet: He has one.

Richard: And he’s getting along?

Janet: He says he is. I can see the difference though. He is better. He is much better. But he still has that blank look a lot. You know which look I’m talking about.

Richard: Yes I do.

Janet: [inaudible 00:09:56].

Janet: He’s supportive of me. He wouldn’t do it though. Well he has issues too because his wife has Alzheimer’s. He has like 10% hearing, and you don’t want to lose that.

Richard: That’s not uncommon, because some people I’ve known had 4% in one ear and afraid to lose it. But your not in that position anymore. You want to move forward.

Janet: Well, you know I have like 10 or 20% in this ear yet, so I can hear noise. I can hear stuff like that. But in the big picture, I can’t hear. So I’m really not losing anything.

Richard: You said to me before, you were nervous about the second operation. And I’m sure people who are listening to this podcast would like to know how you’re feeling about going back in for surgery for a second cochlear implant.

Janet: Well the thoughts that keep going through my head, is it could be twice as good or twice as bad. I’m going to hear things in stereo. What I’m looking forward to is being able to adjust my own volume and everything on my phone. This is a biggie for me. I’m tired of carrying around all those gadgets. I’m excited. I am.

Richard: And nervous at the same time?

Janet: Yeah. It’s like going on a trip. You know, some place you’ve never been before.

Richard: Fear makes us move forward.

Janet: Right. Yeah. Well you either move forward or you go back. And I’m not going back.

Richard: No.

Janet: No. I can’t go back.

Richard: So right now you’re using the Cochlear Nucleus 6.

Janet: Yeah.

Richard: And when you get implanted on the other side, you’ll be able to upgrade to 7 for both sides.

Janet: I’ll have two 7’s.

Richard: Two 7’s. Excellent. Okay.

Janet: I’ll have two 7’s and a 6 on the side.

Richard: As a back up.

Janet: The backup, yeah.

Richard: Sure. You’ve never used the Kanso? You’ve never used one, have you?

Janet: No.

Richard: No. Okay.

Janet: Have you?

Richard: I have both. So-

Janet: You like it?

Richard: I use it for different purposes. I don’t use it that much. I agree. The 7 is much better. Okay.

Janet: Yeah, okay.

Richard: And so somewhere down the road you’re hoping for the stereo sound, better comprehension. Fine. Okay. And I hope in a couple of months from now after you’ve been activated, you’re going to sit down with me and talk about what it’s like after surgery. Because I know a lot of listeners would like to know your experience. There are lots of people sitting on the fence. Do you have anything you would tell people sitting on the fence that can be helpful to them?

Janet: Jump.

Richard: All right.

Janet: Really. I mean, at the point when I realized how bad my hearing was, it was like I said, the more forward you go back, and I’m not going back. You know?

Janet: I’m never going to regain my hearing. I will never hear like I used to hear. So I have to learn how to hear differently. It’s an adventure. It can be frustrating. But I would take this over being deaf any day. I can hear. Sometimes I walk around in the morning without the cochlear on just to have the quiet. But I find myself missing it because I like hearing. I like hearing noise, I like hearing my dog. I like hearing … Well music I need to work a lot on. That’s one thing I do miss.

Richard: Did you enjoy music before?

Janet: I love music. Well, yeah, I think that helped with the hearing loss. I went to a lot of concerts, a lot. You know, we’re coming from the 50s, 60s, and 70s, a lot of rock and roll.

Richard: You know you can get that back? Yes you can.

Janet: Well, I’m going to work on it.

Richard: Good. All right.

Janet: I am.

Janet: But that’s the only thing that I’m missing right now. I can have conversations with people. I’m having a conversation with you. I couldn’t have a conversation before. And now I’m looking forward to having one in stereo.

Richard: And having one in groups.

Janet: Oh, groups.

Richard: You’ll be able to do.

Janet: Yeah, this is one of the things-

Richard: What’s going on with when you have a conversation with a group? What happens?

Janet: This is one of the deciding factors of getting a second one. We went out to dinner with some friends and I was sitting in the middle of two women and I could only hear the conversation on my left. I couldn’t hear the conversation, I couldn’t hear the woman’s sitting next to me.

Richard: And you constantly have to turn your head?

Janet: Right.

Richard: Your head will fall off with time.

Janet: I’m going to unscrew myself here.

Janet: So I was like, “This is crazy.” So when I got tested for the second one, they said, “You’re definitely a candidate. No problem.”

Richard: All right, so what we’ll do is in two months from now, we’ll sit down again and we’ll see what your progress is. Good, bad or indifferent. Because what I’m trying to do with my podcasts is present an unvarnished truth. I want people to know without the influence of a manufacturer involved, that this is what people are actually experiencing. So it’s very helpful.

Janet: Oh yeah. We just came back from a steamboat cruise down the Mississippi. It was lovely. And I was standing there one day, I don’t know where we were on the ship, but this woman comes over to me, taps me on the back and points to her head. You know?

Janet: And she had a cochlear too. So along the trip we would bump into each other and there was a lot of people. So we talked about, “Can you hear them? Do you understand what they’re saying?” You know, some of it, a lot of it in large crowds we had the same thing. But she was also thinking about getting a second one. So we had a lot of common.

Richard: Excellent. That’s very, very good. Very interesting.

Janet: Yeah.

Richard: Well you may motivate people to move ahead.

Janet: I hope so. I do. I really do. Jump. Really,

Richard: That’s what I tell people. If it doesn’t work out, you can always take the processor off your head. You’re no worse off than you are.

Janet: And I’ll be exactly where I was before I couldn’t hear. It’s funny because I’ve been wearing this for three years and I know some people think I can hear like normal people because we have conversations like normal people. And I forget until I take it off. Then everything is like … But I also have tinnitus so I never have a silent moment.

Richard: Well, let’s talk about that. That’s very, very interesting. How bad is it on a one to 10 scale?

Janet: Nine.

Richard: Wow.

Janet: Yeah. I’ve had a long time, a long, long time. Some say it’s an indication that you have a hearing problem. So I’ve had this at least 25 years.

Richard: And sometimes, often actually, a cochlear implant will reduce the amount of tinnitus. So let’s hope in two months from now you can tell me how it’s working out.

Janet: The tinnitus gets worse under stress. Okay?

Richard: True.

Janet: Without the cochlear on, if I’m stressed, it’s really loud. If I’m not too stressed, it’s not too bad. With the cochlear on, it’s not bad at all.

Richard: So it is reducing?

Janet: Yeah, it helps. It really helps.

Richard: So hopefully with the second one it will help even more.

Janet: I’m sure it will. It’s like now I’m not wearing my hearing aid and I have the tinnitus. I can hear it on this side.

Richard: So it doesn’t go throughout your whole head it’s one side or the other?

Janet: Well it does, but when I don’t have something to distract, I can hear it more.

Richard: Okay.

Janet: It’s very annoying.

Richard: I’m sure it must be. I’m sure it must be. All right. So what we’ll do is we’ll plan to talk again in a couple of months. And of course, I wish you all the best. I’m sure Dr. Wazen one of the finest surgeons in the area, and he’ll do his best for you.

Janet: I’ll tell you, he did beautiful work. Beautiful.

Richard: Excellent. Okay, Janet. Thank you so much for your time.

Janet: You’re welcome.