Janet Fox recently received a second cochlear implant and became a bilateral recipient. This is Part 2, the follow up interview done after her second cochlear implant activation.

Part 1 of her interview was done just prior to her operation.  At the time we sat down for that interview it was my stated intention to do another after she was activated with the new one.

Many cochlear implant recipients who are qualified for a second one hesitate for a variety of reasons; fear of losing any residual hearing in their other ear; loss of fidelity of music if they still have any residual hearing and sometimes being in denial, believing and stating that one ear is good enough to get by with.

Janet moved beyond that point, realizing that after more than two years after receiving her first cochlear implant that her remaining hearing was in decline and of no practical use. It was time to take the plunge.

Drs. Wazen and Nayak at Silverstein Institute in Sarasota, who performed her original surgery also did the second.  They complied with an unusual request from Janet which she talks about.

Although her activation was very recent, she already sees the results and the improvement. I felt it was time for her to share experience while it is still new. I was also interested in her reaction to her upgrades from having a single side Cochlear Nucleus 6 to becoming a bilateral Nucleus 7 recipient.

She wrote to me in a follow up communication after the interview:

“BTW you can quote me saying, I’ll never take this off, and it’s so great to hear in stereo!”

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

Richard: I interviewed Janet Fox just prior to her recent surgery where she had a second cochlear implant operation. My stated objective was to capture her experiences on both sides of being bimodal with a hearing aid on one side, and post operation of now being bilateral with cochlear implants on both. Originally I intended to wait a few months post op and post activation to let her hearing normalize. Upon reflection, I decided to move that interview forward in order to capture her experience without the passage of time and forgetfulness. In other words to express her feelings and record her experiences while undergoing the fine tuning or the mapping of her new processors. We discuss the differences between her first operation and the second, the results, and her expectations for the future. In our post interview communication she wrote, “By the way, you can quote me saying I’ll never take this off. It’s so great to hear in stereo.” And this is her story.

Richard: We recently did an interview and you were preparing to have the second side operated on to receive bilateral cochlear implant.

Janet: Correct.

Richard: What made you decide to go ahead and get the second one?

Janet: What made me decide?

Richard: Yeah.

Janet: I couldn’t hear out of my right ear. It was just deteriorating more and more, so I found myself leaning in with my left ear to hear people, and if somebody sat to my right I couldn’t hear them. I can only hear the people on my left. So I think that was a good indication I needed something more.

Richard: Okay. And how many weeks ago did you have the second one done?

Janet: Four. I have done October 1st.

Richard: Oh, exactly four weeks.

Janet: Yeah.

Richard: Okay. And Dr. Watzen was the surgeon this time?

Janet: Correct. He was the surgeon last time too.

Richard: Okay.

Janet: And Dr. Nayak. They did a beautiful job in the surgery. They really did.

Richard: What were the differences in your mind about getting the first one done and the second one done regarding surgery? Were you more afraid, less afraid?

Janet: I wasn’t afraid, but I’m very vain. I am. So I said to him before the surgery, “Listen, I have very short hair so you have to make sure they’re even in the back.” And they did. They measured everything. They did a beautiful job. I wasn’t anxious about the surgery itself. I know Dr. Wazen is good because he did the other one. He did a good job. So no, I wasn’t concerned about it. And just going through the surgery, it was a process. Waking up from the surgery this time was different.

Richard: What was different about it?

Janet: It was horrible. Last time I didn’t have any repercussions from the anesthesia and this time I did. And the pain in my head, I felt got hit by a Mack Truck. It was bad.

Richard: Did they have any idea why it was different the second time? They’d never discussed it with you?

Janet: No. They don’t know why, but I need to find out the name of the anesthesia so I don’t get it again because I had a bad reaction to it.

Richard: So then somebody going in for surgery, they should know what the anesthesia is, discuss it and if they’ve had surgery before to discuss that with the anesthesiologist.

Janet: Yeah. As far as I know it was the same. Now I don’t know how much my diet has to do with it because I’m eating very clean so everything affects me.

Richard: That makes sense. All right. And then so the postop was different? You just felt sicker?

Janet: Yeah, I was sick for like two days. It was not good. And then I came home and I just slept.

Richard: Which is probably a good thing to do.

Janet: Feeling like that, yeah. The first one, I didn’t have any of that. And the first one I just remember just going home and sleeping, and then being okay, but not with this one.

Richard: Was this one vertigo or was it pain?

Janet: No, I had vertigo. I opened my eyes and the whole turned sideways once. Yeah, it happened once. I thought I was falling out of bed. Thank God it only happened once.

Richard: And what about the pain? Was there a lot of pain this time?

Janet: Yeah, there was a lot of pain.

Richard: What did you take?

Janet: Well, they gave me a very, very strong painkiller narcotic, which didn’t agree with me either. So I had to stop taking that and I just started taking Tylenol.

Richard: Okay. And then you had to wait how many weeks until you are activated on this one?

Janet: Three.

Richard: Three weeks you waited?

Janet: Yeah. It was three weeks and the activation was very different. This whole thing is very different than the first one.

Richard: Let’s talk about that for a bit. What was different?

Janet: When I got the first one activated I could understand voices. I could distinguish what they were saying. With this one, everything is just garbled. There’s no understanding. It’s just a lot of noise when I’m wearing just the one. The new one.

Richard: The new one.

Janet: Yeah.

Richard: But it’s only been how many weeks now?

Janet: Three weeks.

Richard: It’ll be three weeks.

Janet: But I want miracles.

Richard: Two weeks. So right now you’re still relatively new with the new side and it’s not clear enough yet. It should get better with time.

Janet: It’s not clear on itself. Paired with the first cochlear I can hear very well. I went out to lunch with three other women in a noisy restaurant and I heard say 90% of the conversation.

Richard: Wow.

Janet: Yeah. That’s what I said. I could actually hear people.

Richard: It’s been years since you did that.

Janet: Yeah, it’s been a long time. On itself, I can’t … Well, I just had an adjustment today, so I don’t know what’s going to happen when I take the other one off. I have no idea yet. As far as feeling goes, I’m feeling very vulnerable since the surgery.

Richard: You want to describe that a bit? Vulnerable how?

Janet: Just kind of shaky. It’s like I’m not sure what’s going to happen.

Richard: With your hearing?

Janet: Well yeah, and my emotional wellbeing. It’s a scary experience. You hope for the best and then you hear tin. Then I remember what happened with the first one. I heard better but it was still tinny, but it improved over time and practice. I got to practice too.

Richard: So the new one, it’s tinny now, but hopefully as you practice more it will clear up and then you should be able to use either one independently if you had to, but right now, no.

Janet: Well yeah, I can use the left one independently. Already, in such a short period of time, found that I’ve been dependent on the right one because I hear so much better with two.

Richard: Two ears are better than one.

Janet: Oh they are. That’s why God gave us two.

Richard: That’s true. So the fine tuning this morning was your second. Today was your second mapping with the fine tuning and they basically did what today?

Janet: They basically raised the volume.

Richard: So they haven’t added any SCAN programs to it yet?

Janet: No, nothing yet. Nothing.

Richard: Which is not unusual. Usually the first three or four they just keep getting your brain used to the volume and then they worry about the SCANs later.

Janet: Yeah, that’s what he told me. He said, “Don’t worry about anything, but just get the volume. And then after we’re on the fifth one, we’ll start working with playing around with everything.”

Richard: Excellent. That’s good. So you don’t regret having the second one.

Janet: Oh no. No, I don’t. I mean I could have told myself, and my brother does this, I had that 10% hearing, that’s good enough. It’s not. I still have a little residual hearing.

Richard: I was about to ask you about that. Tell me about what you feel with the residual hearing.

Janet: I can hear things drop, loud noise. I can’t hear my dog bark but I can hear loud noises. I feel things more than hear them, I think. I was surprised I could hear anything at all.

Richard: That’s one thing that a lot of people are afraid of is losing any residual hearing, but the understanding I have is that the surgical techniques have improved so much that retaining residual hearing is becoming more common. Did the surgeon discuss that with you?

Janet: No.

Richard: Not really. Okay.

Janet: No. I think he maybe discussed it the first time I had it. But the residual hearing that’s there is minimal.

Richard: Does it give you any confidence you have any left at all?

Janet: No.

Richard: No. Okay. That’s fine. That’s a good point. And your advice to somebody who is thinking about getting the second one, sitting on the fence saying that my bad ear is good enough. Do you have any advice for them?

Janet: Well pay real close attention to the ear that you don’t have the cochlear on, and really be honest with yourself in self evaluation of how you’re hearing. Like I was saying, my brother does the same thing and he says, “Well, it’s good enough.” When push comes to shove, it wasn’t good enough for me.

Richard: You know that’s a very interesting point you said to me before because your brother has the single side cochlear implant. He was using you as a guinea pig to see what the second side is like.

Janet: Probably. Well now he’s going to get all my tools. I had the N6, now I had the N7, which is really a nice upgrade. I can talk on the phone without having the phone clip, which I love. I don’t need all that stuff, I’m giving it all to my brother. He still has the N6.

Richard: That’s Great. Well, what do you have for backup? If this fails you keep one? You keep the processor though.

Janet: I have an N6, yeah. I’m keeping that, but I have multiple tools that I won’t use.

Richard: Excellent, so maybe your brother will listen. Now, let me ask you another question. The differences between the N6 and the N7, because people often say, “Should I bother upgrade?” Is it worth it?

Janet: Yeah, I mean just to have access to the phone, like the phone rings, I can pick it up. I think the sound is better.

Richard: I found the sound to be more robust. Do you find it clearer?

Janet: It’s mellower, I would say.

Richard: Wow.

Janet: Yeah. That the N6, but again, I’m still getting used to it, but I like it better. I do.

Richard: This is why I wanted to sit down and talk to you so soon after you were activated with the second side because I wanted to be sure your memory was fresh.

Janet: Oh, it’s fresh.

Richard: Okay, that’s good. Do you have anything you’d like to add to people who are sitting on the fence?

Janet: I would say go for it. I just say go for it.

Richard: Okay, that’s great.

Janet: Like the first one, go for it.

Richard: That’s great. Okay Janet, I thank you so much for your time and I’m sure that people are going to be interested in listening to part two of our interview. And if you’re thinking about going bilateral you can take some of Janet’s experience and use that to make your decision. So thank you so much.

Janet: Thank you.