We first met David more than two years ago. His high frequency hearing loss was interfering with his job as a reporter and was a strain on him and his family.

He was a through researcher. He wanted to retain whatever natural hearing he had. In his case a hybrid cochlear implant was the best possible solution. A hybrid cochlear implant is a combination of a cochlear implant with a hearing aid component. They are not common and David’s search led him far afield from home until he found a surgeon in which he had full confidence.

His high frequency hearing loss probably started when he was very young. Like many others, he did not realize he had a problem until he was an adult and his story speaks to many of us who lived in denial of our hearing loss.

Happily he received an Advanced Bionics hybrid and he talks about his progress and the changes it brought to his life.

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. Welcome to Cochlear Implant Basics.

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

Richard: My guest today is David. David is a sportswriter for a southwest Florida newspaper. His hearing loss, which is in the high frequencies, probably began in infancy. It was not diagnosed until he was in his 20s. By his own admission, his hearing loss resulted in shyness while in high school and in college. Later when he worked as a reporter, it caused him to butcher names and scores when receiving them over the phone.

Richard: In denial about his hearing, he muddled his way through. Using strategies and tactics that might be familiar to many of us with a long-term hearing loss. After delay of more than 15 years, he opted to receive a hybrid cochlear implant. A process are reserved for those who retain their own low-frequency hearing. Today he has a bimodal system cochlear implant on one side and a hearing aid on the other. It was a life-changing event for David.

Richard: He talks about the reasons he delayed his decision. How he chose his surgeon and his concerns to retain his residual hearing. This is his story.

Richard: Talk a little bit about your hearing loss. How did you lose your hearing loss?

David: Well, I think I was just born and that’s how I lost it. It depends on which doctor I’m talking to. Some of the doctor’s think I was born without high-frequency hearing, and some of the doctor’s think that maybe I was four or five and maybe I took an antibiotic that was over-toxic and bad for my hair cells in the inner ear. But it doesn’t really matter. I mean, I couldn’t hear high-frequency for the bulk, if not all of my life. So, talking about the top keys on a piano. I’m talking about when you hit a microwave button, the beeping or in my car, I’ve got a Subaru and they have a lot of warning sounds in the car. Like if there’s a car in your blind spot, bing, I couldn’t hear that before I got the implant.

Richard: Did you have any siblings with hearing problems? Brothers or sisters with a hearing problem?

David: No. They’re fine. I have three brothers, and they all can hear much better than I can.

Richard: So, how long did you wear hearing aids? When did you lose your hearing?

David: I think I knew in high school. I was always shy because I didn’t like being around big groups of people talking. So, I tended to do better in one-on-one friendships, and not big groups hanging out talking together. That put me at a disadvantage in high school. You know, when you’re in high school everyone’s kind of hanging out together, and I would prefer talk with a friend by himself because when you got a lot of voices, I just couldn’t function real well.

Richard: We you wearing hearing aids back in high school?

David: I didn’t know that I was deaf. It wasn’t really until college, when I was 20, 21, when I really started to go see an audiologist and where they’d be like, “Hey, you’re deaf.” Or not, “You’re deaf,” but, “You can’t hear high-frequency.” I did not get a hearing aid until much, much later. I’m 47 now and I was maybe 32 when I got the hearing aid.

Richard: So, it was a long time. When you were in college, did you have any coping mechanisms to get through school?

David: No. I did fine. For the most part, I was in a small classroom. I went to the University of Kansas, which was a big, giant school but for the most part, I took classes in small classroom environments. So, I would only have 10 or 15 kids in most of my classes. The classes where I had the big, arena style classes, I just got through it. I’m no genius but I think I got a 3.0 GPA, which is good enough and I had healthy B average.

Richard: How did you deal with the big classroom? What did you do in college when you were in a big classroom and it was difficult to hear? That’s what I’m trying to find out. Did you have a coping mechanism in particular classroom?

David: I would always sit as close as I could in all my classes. I have always been one to sit at the front of the class. Like I said, I think I was in denial. I know I was in denial for a long time about having hearing loss. I didn’t want to have anything wrong with me. Nobody likes to have anything wrong with them. So, it really wasn’t until I decided to get the implant, where I was kind of like, all in on needing one, you know, “I can get through. I can do this.” That’s kind of always the attitude that I’ve had. That’s actually good and healthy except for when you’re in denial about being able to get something done and you think you can do it and you really can’t. That’s a problem.

David: For many years, I was a sportswriter here at The News Press and one of my responsibilities in my mid-to-late 20s was taking high school sports results phone call and I didn’t have the hearing aids for a lot of those years. I butchered a lot of names. I wish I could apologize to every teenager that I misspelled their name.

Richard: Can you talk about one specific incident?

David: I don’t remember anything real specific but I can tell you that the consonants in human speech, most consonants fall in the frequency I can’t hear. So, the S’s and the F’s and the PH’s and the Z’s, they all kind of jumble together for me. Even now that I have the implant, it’s not perfect and I’m on the phone just yesterday and we’re talking about a real estate development deal, what’s going to be built on this corner and he said, “Keke’s Breakfast Café,” but it took me like three or four or five times to get the word right. Because it’s, you know, Keke’s is K-E-K-E, but my brain wasn’t figuring out what he said.

David: After the implant it takes some time to adapt to this.

Richard: How long have you had the implants now?

David: I had the surgery on December 7th and I had the activation on January 11th. Most people wait a month. I waited five weeks because got it done at the University of Iowa. I wanted to wait an extra week and wait to heal.

Richard: We’ll come back to that in a little while because I have more questions about your vocation and your job.

David: Okay.

Richard: Were there particular support that you had at your job here? Once you knew you had a severe hearing loss, did your fellow employees here, were they supportive or did you have problems?

David: Yes. Yes. The News Press has been tremendously supportive. When I did get the hearing aids, they were a game changer for me. They helped a lot. Not as much the implant but they helped a lot. Especially Phonak, they make a device called the Com Pilot and that was a game changer for me because when you get a Com Pilot, it funnels the voice into your hearing aid or your implant. I still use the same Com Pilot that I’ve had for a long time. When I answer the phone, I just hit a button and the voice goes right into my devices.

Richard: Do you have to hold the phone in front of you at that point?

David: At one point I did have a device that was compatible with the Com Pilot that I could hook-up to my work phone. I used that for a while. Then I found that just dealing with my cellphone was better for me and more convenient. While most of my colleagues have a cellphone and a work phone, I talked to my bosses and I said, “You know what, I don’t want the work phone anymore. I just want to do everything off my cell.”

Richard: It’s not an uncommon situation you’re talking about where people work in an office and there’s an office phone and they have their cell. So, that’s why I’m trying to find out from you how you dealt with it because other people want to know.

David: Yeah. I did have a colleague in a different department that she just had a caption phone where when someone speaks, it will transcribe what they say. I think it’s called a CapTel phone, right? I’ve never had one of those. I have heard that there’s a delay and in my vocation, it’s just better for me to hear. You mentioned a coping mechanism, with being a reporter with a hearing deficit, it’s a dangerous combination. Not the best thing.

David: So, couple things I’ll do is, if I am in a crowded environment, I’ll pull the guy aside, or woman, aside and go, “Hey, listen. I don’t hear well. Can we step into a quiet area?” I’ve done that a lot.

Richard: How do people react?

David: They’re like, “Hey, yeah. Sure, no problem,” but I can’t even think of a time where someone looked at me funny. You have to have a little bit of confidence though and know your limitation. The other thing that I’ll do, this happened a lot in what I call, “The dark time,” which is the time between my implant surgery and the time of activation. I had a really tough time hearing those five weeks. There were a lot of phone calls that I had to make to take care of stuff through the insurance company.

Richard: Did people make the phone calls for you when you couldn’t hear [crosstalk 00:11:05].

David: I did a lot of them. I did a lot of the calls. I’m only doing them through my hearing aid ear and not through this ear. This ear, my good ear, is actually qualifies for an implant as well.

Richard: How do you feel about that? Doing a second implant?

David: I am so glad I did this one. At the time, I would’ve done both, had insurance allowed it. My insurance company will only allow one cochlear implant at a time. So, I chose to implant my left ear, which is worse than my right ear. Similar, but worse. The doctor recommended I do the worse ear first. They told me that-

Richard: Did you have any input into which ear to do?

David: Yeah, it was my choice. I wanted to get the worse ear done first. It just made sense to me because I do have a significant amount of hearing left in both ears now but I had more hearing left in my right ear and I didn’t want to risk losing it through the surgery.

Richard: Talk a little bit about residual hearing and fear of losing it. That’s a very, very common issue for people who are candidates for cochlear implants. Their fear of losing residual hearing. Talk about your feelings of that.

David: So, it’s a healthy fear to have, to not want to lose the hearing that you have, in order to get back with the implant. I’ll be honest with you, it probably took me an extra two to three years to get the implant done because of that fear. In 2003, Dr.Luetje in Kansas City, he was very renowned, and he retired now, but he one of the pioneers in cochlear implants. He wrote me a letter, looking at my audiogram’s and he said… This is in 2003. He said, “I want you to wait for two things to happen before you get your implant. I want you to wait for your hearing to get worse,” because at the time the hybrids weren’t a thing yet. They usually just knock out all your natural hearing and not think about your residual hearing. Then he said, “The second thing I want you to do, is I want you to wait for us to get better. I want you to wait for the technology to get better.”

David: So, in 2018, I decided that well, my hearing got worse and the technology got better. So, I followed his advice 15 years later.

Richard: No regrets?

David: No regrets. Even though I’m so glad that I got this left ear done. I’m also glad that they didn’t let me do the right ear because of the whole music situation. I like listening to music and with the implant, I’ve been told that it takes a good year to adapt to music. Now I’m four months into the, I really got another eight months to get to maybe where I’m going to be, music is kind of blurry. Okay. Like, human speech is getting so much better. Cochlear implants were designed with that in mind. They were designed with understanding human speech better. They weren’t designed so much as to help you listen to a symphony orchestra better.

David: I’m finding that if I listen to one instrument at a time, it comes in better than if I’m hearing the whole band. I’ve also found that my good ear, if you will, sometimes helps my implanted ear in understanding things, especially with music. However, my implanted ear helps my good ear a lot, especially with consonant sounds in speech but in music with all these sounds that I can’t hear with this ear at all, percussion, drums, cymbal, the tambourine, the keyboard and a piano. So, the terms are bilateral, which is what you are when you have two implants or two hearing aid, or bimodal, which is what I am now, where I’ve got an implant and a hearing aid.

David: So, the surgeon was like, “Well, in six months you might start thinking about wanting the second one,” but I’m not there yet.

Richard: But you also have something that’s fairly unusual, which is a hybrid cochlear implant, and it’s not that common, right? It’s not-

David: No, it’s not that common.

Richard: Why did you decide on the hybrid?

David: Actually the doctor and some of the companies are trying to get away from the hybrid term now because they’re really trying to mainstream hearing preservation in the patients now. My surgeon, it was a big thing with him and he’s done a lot of these surgeries. He’s done more than 300 hybrid, if you will and that was why I went to Iowa because I had a comfort level with his experience. His name is Dr. Bruce Gantz. Since 1995, he’s received more than 60 million dollars in grant money to research hearing preservation techniques.

David: One of my hard-of-hearing colleagues said she wants to wait until they have stem cell hair regeneration. I told my doctor that, and he said, “Well, she’s going to waiting in a box because that’s not happening any time soon because it’s science fiction right now that we can regenerate hair cells through stem cell techniques.”

David: Now, the next thing is going to be robots, okay? Because my surgeon’s telling me that he’s confidant that a robot can insert the electrode into cochlear more efficiently than the human hand can and that there will be less chance of disrupting the healthy hair cells that are in there right now. I did not want to wait until the robots were ready. I was ready to become a robot myself at this particular time.

Richard: So, do you have no regrets about having [crosstalk 00:17:34].

David: No regrets whatsoever, at all. I don’t know how the future will unfold, nobody does. I can’t tell you right now if I’m going to get this ear implanted also. Right now I don’t want it done but I’m not going to say I’m never going to get it done because this was so successful and helpful. However, there’s certain things that I can do with this ear, that I can’t with this.

Richard: Name one.

David: The music is the biggest thing. Also, there are times when I can take off the hearing aid and the processor of the implant, I’d just take a walk around the block, right? I can still hear enough to get by because I have the residual hearing. Sitting here today, there’s always a risk of losing the residual hearing through the surgery, and I’ve done it with this ear, and I’m fine with it. I did lose some residual hearing with this ear. I still have enough left to get by in an emergency type of situation.

David: Not being able to hear, it’s not the end of the world for me. Sometimes I enjoy my quiet moments.

Richard: Talk about the moments of quiet. When do you like quiet?

David: Well, this morning I went swimming, okay? I’m not wearing my implant. Some people will get the waterproof case for their implant but I haven’t invested in that. But if I am swimming laps or if I’m out bike riding. When I’m out bike riding I can’t hear all the birds that I can hear with this thing.

Richard: So, talk about that. Yes. You can hear birds now but you weren’t able to before.

David: Yeah, I mean who knew that so many birds made so much noise. I had no idea.

Richard: What about sounds around the house? What do you hear?

David: Sounds around the house. The microwave, the oven. Like setting the oven timer, I could never hear the beeping on that before. One thing that hasn’t changed is my dog. When he barks, and he barks incessantly sometimes, and I’m wondering if there’s a way to program the implant to not pick up my dog barking, would be a wonderful programming thing, if they could find it all-

Richard: You know, I need to ask you or I want to ask you about your family. How do they deal with your hearing loss and when you decided to get a cochlear implant, were they supportive? Were they afraid? How did your family feel?

David: My family was tremendously supportive. My wife was overjoyed because now I can hear her better. Now I don’t have any excuses for… You know, we know the difference between hearing and listening, right? So, now that I can hear, I should be able to listen better, right? You know what, I can hear her better and it’s tremendous.

Richard: What about your children?

David: So, my son is 11. With him, because he’s my son, we get it. He understands where I’m at with my hearing. It’s more like when he’s around with all of his friend, so now I can understand better than I used to.

Richard: Now you spoke about the fact you waited, you kept delaying getting this done. Can you talk about who was the most important influence, what influenced you the most to decide to make the plunge?

David: Well, you were a tremendous influence, believe it or not.

Richard: Why?

David: Because-

Richard: That’s flattering but there must have been other people out there.

David: Well, yeah but it’s you and there’ve been a couple other implantees besides yourself. There were three of you. One of them I met on Twitter. I’ve never met him in person but he had both of his ears implanted. The company put me in touch with another guy that had both of his ears implanted. So, you have all this fear, it’s helpful to talk to people who have been down that road before.

Richard: You know what I would love to know a little bit more about how you made your decision to, you know for the company you chose. What was there about the company that you decided to use that?

David: I chose Advanced Bionics, partially because the surgeon had a good comfort level with the company. He inserts Med-el and Cochlear as well, but he has a software program during the surgery that he told me only works with the Advanced Bionics brand. During the surgery he’s able to monitor my existing hair cells and he was able to stimulate them and see them firing off. So, if he gets too close to them, he was able to back off in sort of the electrode around the sensitive areas. I’m not into this whole brand snobbery. I can’t tell anyone that my brand of implant is better than your brand or this other guys brand. But guess what, I can’t try all three and then decide.

David: It really shouldn’t matter. All three companies are great, and they all three are going to help you hear better.

Richard: But the surgeon was the one who…

David: I think all the surgeons develop relationships with the different companies. So, if you talk-

Richard: Have you been traveling since you got your implant?

David: You know what? I’ve only flown once since I’ve gotten it, but there’s not trouble like at the airport or anything like that.

Richard: Can you hear the announcements now?

David: I don’t know because I’ve only done one flight. So, I’m going to take a trip later this summer, and I’ll pay better attention because you got to remember the first five weeks after activation were a big challenge because my brain was just trying to figure out what all these noises meant. So, I think I would understand the announcements better now than I did.

Richard: Now that you have an implant, can you accomplish something you haven’t done before? Or having goals in the future now that you have your implant?

David: Gosh, it’s been four months. So, career-wise I seem to be trending upward. I have a new newspaper column that runs every Tuesdays on news-press.com. I don’t know. I can’t sit here and tell you that if I hadn’t had the surgery, they wouldn’t have given me the column, but maybe when I got back and they realized I was hearing better, they were-

Richard: Do you have any advice for other people who are considering?

David: For people on the fence you mean, right?

Richard: Yes.

David: Yeah. So, if you’re on the fence, I’m not here to give anybody medical advice but I would encourage anyone on the fence to do as much research as you can. Look at all three companies. Research the doctors and find out from them. Ask them, “Hey, how many of these surgeries have you done?” I ended up traveling to Iowa to get mine done. I’m not saying someone on the fence has to go to Iowa and see Dr. Gantz. But these surgeries are starting to increase. We got a large portion of the population getting older and losing their hearing and more doctors are learning the techniques. So, I think there’s more option now than ever before, but you got to be relentless in your research and don’t just take what I say as the be all, end all. You want to find out for yourself who’s the nearest doctor and who’s the nearest, most experienced doctor.

Richard: I want to thank you for your time.

David: I really appreciate you coming down here and spreading the message of the cochlear implant.

Richard: Thank you so much for your time.

David: All right. Thanks.