16 Jan Chery Edward Part 2
This is Part 2 of the interview with Chery Edwards. It is almost two months post-operation. She flew from Denver, Colorado to Sarasota, Florida to receive a Labyrinthectomy and be simultaneously implanted with a cochlear implant by Dr. Jack Wazen at the Silverstein Institute.
Chery returned home after two weeks recovery for the Labyrinthectomy. She was activated in Colorado and has had three MAP sessions with her audiologist after receiving a Cochlear Nucleus 7.
This was the ideal opportunity to catch up with her while her reactions to the experience are still fresh and to talk about her recovery, rehab and how she is experiencing the issues of her Meniere’s as well as hearing. Her insights about music are also invaluable.
Chery has a remarkable and inspiring story.
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Richard: Chery Edward suffered with Meniere’s disease for 20 years. It left her deaf in one ear and with vertigo issues that forced her to stop driving. In November 2019, she underwent surgery for her balance issues and simultaneously was given a cochlear implant. As promised, this is the post operation interview. Following up you get to hear her remarkable story. I prefer to let Chery tell it in her own words. This is her story.
Richard: Good morning.
Chery: Good morning.
Richard: We’re talking with Chery Edward this morning and part two of our original interview. And Chery, you had surgery on November 19th. I don’t have the date when you were activated. Could you describe the recovery from your surgery?
Chery: Well, of course, as you know, I had a labyrinthectomy as well as the cochlear implant done and recovery from the labyrinthectomy was tough, especially the first two, three days. Just the vertigo and balance issues. That’s normal and it gets better as you work really hard at your vestibular exercises, it gets better over the weeks. Well, I was activated on December 11th to answer your question about that, but I would say now, I’m coming up on two months. On the 19th, it’ll be two months since surgery and my balance is probably about 85, 90% consistently. The exercises that they have me doing that are intense are the hard ones, but I’ll get there.
Richard: So the question is, what kind of exercises…? How many hours a day do you have to do them? Is it every day or…?
Chery: It is every day. I usually do them between an hour and a half and two hours a day. I break them up in half hour slots and they consist of different ways of moving your eyes, different ways, whether you’re standing or sitting, they have a balance. It’s like a cushion that they have you stand on when you’re doing some of these harder ones. And what it does is, it challenges your balance so that your brain can learn how to balance with just one labyrinth.
Richard: But every day it’s a little bit better or is it like a plateau [inaudible 00:03:51]?
Chery: It would make more sense to measure it like from week to week as opposed to day to day, because day to day, a lot of times you can’t tell the difference, but when you look back a week or more, you can tell.
Richard: That’s on your balance side. What about activation day? When you had the implant activated? What was that like?
Chery: That was really exciting. Sort of weird. Everything was incredibly loud, so that took some getting used to. It was good that I had some practice with having tinnitus for a long time. I wore it anyway, even though everything was really loud. My audiologist said I had a great activation. I was able to actually understand some words. She sounded mechanical, but I was able to understand some words through activation, which I understand I’m very, very blessed. I think it’s a [crosstalk 00:04:46].
Richard: Absolutely. And ever since activation day your hearing’s gotten better?
Chery: Yeah. I’ve just been working really hard on practicing and listening and I’m convinced that that makes a huge difference.
Richard: Can you describe what you’re doing for listening practice? People want to know that.
Chery: Mostly what I do is I’ll get an audio book on my phone and then I’ll actually order the hard copy and I read at the same time that I’m listening, so that’s been really helpful. When I’m running around the house doing chores or whatever, I do a lot of just streaming directly to the CI. I walk on the treadmill at the same time streaming to my CI with the TV streamer and the close captions off. I usually do that for about an hour, hour and a half every day. So those are all things that really help. And yesterday I just got some new Bose headphones and I’m absolutely in love.
Richard: Tell us about the Bose headphones. What happens?
Chery: Well, because I am fortunate enough to only be deaf on one side, my good ear hears the full sound, like a natural ear would and I think it’s going to help to train my CI because for the first time in 15 years I now have stereo sound. I can’t even put it into words how amazing that is. It’s so awesome.
Richard: [inaudible 00:06:02] I recall. What did you play first when you put the stereo sound on? What were you listening to?
Chery: Well, Karen Carpenter is one of my favorite old… from teenage years. Mostly jazz. I love jazz and old seventies stuff. The mellow seventies stuff.
Richard: I found jazz easiest to recover, to use for rehabilitation too because anything with swing with a lot of brass just seems to be easier.
Chery: Yeah, I’ve noticed that with jazz too. It’s good to hear you say that because I’ll stream it more. I mean, these poor headphones are going to get used a lot.
Richard: Same thing, same thing. I went to Best Buy, I tried on every single pair of headset before I decided on one. How did you decide on the Bose?
Chery: Well, I know Bose because we have a Bose stereo system and stuff. I’ve always loved them. I know they’re expensive, but they’re worth it, and I looked at the size of the inside of the ear piece that covers your ear and I picked the one that’s not the highest level. It’s the next to the highest level because it had the largest opening and I wanted to make sure I covered the microphones well.
Richard: I did the same thing.
Chery: Did you?
Richard: That’s good. Absolutely, the same time. Tell me a little bit about speech. How’s that coming along? You had [crosstalk 00:07:27].
Chery: Speech recognition, oh my God. I’ve been fortunate to have the activation and then three mappings since activation. This last one, she tested me with sentences and I got 96% speech recognition. I was absolutely blown away and it is still echo-y. It still sounds loud and it echoes. That’s the best way, a bit muffled maybe. But if I focus and pay attention, that’s the level at which… I mean, to be that way a month after activation… I’m very aware that a lot of people don’t get to have these kinds of results right away. And I’m just humbled and grateful beyond measure.
Richard: Can I ask you again, I want to go back to the headset because you do have natural hearing in one ear and the CI and the other.
Chery: That’s correct.
Richard: So, tell me a little bit how that sounds.
Chery: Well, of course in my good ear, it sounds incredibly gorgeous through Bose headphones. I always turn the app on to the music setting and I would say tinny is one of the words I would use to describe it. Also, I don’t hear pitch nearly as well, so when I’m using the Bose headphones, I find myself just closing my eyes and trying to tell my brain, this is the pitch, this is where we’re at, because I can hear it clearly with my good ear. I’m very blessed.
Richard: So, music’s coming back?
Chery: It is. I was telling my husband last night, I really feel like I’m getting music back, especially growing up with my dad as a music teacher and stuff. There’s no words you can put to that, that say how meaningful that is. It’s just incredible. And this is just the beginning.
Richard: Music is so important.
Chery: Yeah, it really is. Yeah.
Richard: [inaudible 00:09:26] you sent me a clip of you playing the flute. I was blown away. How long ago was it you played the flute?
Chery: Oh, probably 35 years. Yeah, so I’m incredibly rusty.
Richard: It was absolutely beautiful. Beautiful piece, I was very…
Chery: Well, thank you. Kind of like riding a bike. I noticed with practicing yesterday. The first time it took me a little bit to go, Oh yeah. And then it just started to come back. I’ve got lots of practicing in my future though as well. And I want to do the same with the piano because from what I understand, to train your brain, it’s kind of like speech and reading. So if you speak it, you write it and you read it, you do all those things and you listen to it, it’s part of how we learn to speak. Music is the same way. If you play it, you read it on the music and you’re listening to it at the same time, it’s supposed to help your brain catch on.
Richard: You’re obviously doing a good job with it.
Chery: Yeah. Well, starting. I feel so new at this still, but just beyond thrilled with my results.
Richard: Now, your balance is coming back a bit and you told us in your first interview you haven’t driven in 20 years. Do you have plans to go back?
Chery: Well, on that interview I got off on another subject talking about CIs and I didn’t answer that. I haven’t driven in eight years. I’ve had Meniere’s for 20 years. So I am seriously looking forward to getting to the place where the vestibular therapist releases me and said, “Yep, you can go get your license.” And I expect that to probably be in the next month or six weeks.
Richard: Wow. we’ll want to be there for your driving test.
Chery: Yeah. Oh, no. I’m not looking forward to that but we’ll get it done.
Richard: That’s great. This is fabulous. I’m so happy for you, the results was spectacular.
Chery: Oh, thank you.
Richard: Would you like to say anything to everybody out there who’s on the fence at this point?
Chery: I think I said this in the first interview. Life is short. Just do it. Just jump in with both feet. Give it your all. When you don’t feel like it, push yourself to do the practicing. Just do it because it enriches your life in a way that you can’t even put into words. For me, the ability to be able to have directional hearing now, is just huge. So when a sound comes, even though it might not sound like it does in my right ear yet, at least I know where it’s coming from. And that’s a huge deal with single-sided deaf people because the sound, you have no idea where it’s coming from. So yeah, I would just encourage people to reach out to people like you and myself and others that would support them and just walk the journey.
Chery: To be honest, recovering from the labyrinthectomy was much more difficult by far than the CI. Much more difficult. So, if all you’re doing is just the CI recovery, yes, it surgery, but man, my experience was that it was not difficult.
Richard: I’m glad you had it done. I’m glad you’re making such tremendous progress. We’re all very proud of you.
Chery: Oh, thanks Richard.
Richard: [crosstalk 00:12:43] your future.
Chery: Yes, yes.
Richard: Just amazing. So, thank you so much.
Chery: I want to take a moment too, to say thank you for all that you do. You work so hard to empower people, encourage them so that they can join the world of hearing again, and it just means so much to so many. So, I want to take a moment to just say thank you for that.
Richard: You’re more than welcome. I get great pleasure when I hear success stories.
Chery: Yes. Oh, absolutely.
Richard: All right. We’ll stay in touch.
Chery: Okay, very good. Thanks, Richard.