Meniere’s disease is insidious. It not only causes severe vestibular balance issues, it often leaves its victims deaf in one ear or both.

Chery Edwards was such a victim when she was hit with Meniere’s 20 years ago. Her vestibular issues caused bouts of vertigo which caused her to give up driving. She could never predict when it would strike and cause her to lose control of her car.

It also left her deaf in one ear.

Although Chery is among one of the most positive personalities I have met, she was also resigned to her fate. That was until she recently saw a YouTube video with Dr. Herb Silverstein, who described a possible solution to the symptoms of Meniere’s.   Traveling from Denver to Sarasota, she had a consultation at the Silverstein Institute.  She will receive a Labyrinthectomy to remove her middle ear and resolve the vertigo issues and simultaneously receive a cochlear implant to bring back her hearing with a Cochlear Nucleus 7.

Chery describes her struggles with Meniere’s and her upcoming operation which will be performed by Dr. Jack Wazen at Silverstein.

This interview will be in two parts, the pre-op and the post activation.

The two microphones recorded at different levels. The transcripts will assist if you cannot hear the questions. Nonetheless, Chery’s experiences speak loud and clear.

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. This site is not medical advice nor is it brand specific.

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

Richard: Chery Edwards has not driven a car in 20 years. Meniere’s disease not only caused her to suffer severe vertigo issues from time to time, but it has left her deaf in one ear. She’s an intrepid soul who has dealt the hand she was given but was resigned to her fate as well. That was until she recently found a YouTube video of Dr. Herb Silverstein who talked about the possible solutions for the symptoms of Meniere’s. Her near future plans are not only to have surgery to alleviate the vertigo, but to simultaneously have a cochlear implant inserted hopefully to solve two problems at one time; the Meniere’s vertigo issue and to regain her hearing. Again this is planned as a two-part interview pre-operation and post activation. This is her story.

Richard: Do you want to tell me a little bit about your hearing loss? When did you get Meniere’s disease or when did you start to lose your hearing?

Chery: I actually had my first Meniere’s attack when I was about 36, 37 years old. I was actually diagnosed at 37 and that was about 20 years ago. So it was about 1999.

Richard: You told me before, you haven’t been able to drive a car since then.

Chery: That was progressive. Meniere’s disease is typically progressive. The attacks come and go and when they hit you, the fullness in the ear, the vertigo, dizziness, nausea and vomiting, all that stuff hit you. And then it usually takes several hours of sleeping afterwards to kind of recuperate from the attack. And as you have more and more attacks, your hearing is slowly decreased until eventually you’re deaf. It took me about, oh, just under five years to go deaf.

Richard: So your deafness is on one side?

Chery: It’s on the one side. It’s on left. Yes.

Richard: Five years of progressive loss, too.

Chery: Yeah. Yeah. That’s exactly how it goes. And then I’ll never forget the time I went in and they did a hearing test, and I asked the doctor, I said, “Do you think it’s going to come back this time?” And he said, “No.” He said, “Your hearing is gone and it will never come back.” He was right. It never did.

Richard: What did you feel that day when he told you that?

Chery: Well, of course, I wasn’t happy about it. I’m a pretty tough person when it comes to strengths, so I just accepted that I was going to have to live with just the hearing in one ear. Probably the largest fear that I’ve ever had was that I would develop bilateral Meniere’s disease and then go completely deaf in both ears.

Richard: Did you ever meet anybody who with bilateral Meniere’s?

Chery: I have met people on Facebook, but never in person that are bilateral. Yep.

Richard: At this point, they don’t think it’s going to spread to the other side.

Chery: They don’t think so. It’s not typical for someone that has had Meniere’s disease for as long as I have, but it does happen. The most recent attack that I had really did scare me because it was the worst one I’ve ever had. It lasted for about 16, 17 hours.

Richard: Talk to me a little bit about what that felt like at that time.

Chery: I woke up in the morning and the room was spinning so much so that I couldn’t get out of bed. That’s the only way you can describe it. You can’t walk, you can’t get up. You can’t even really roll over in bed because you don’t know which way is up.

Richard: Is there a nausea involved in it or not?

Chery: Yes, very much so. Yeah. There’s violent throwing up that goes with it. This particular attack, the symptoms were not any longer just in my left side. I had the fullness in the ear and the strong tinnitus was in my good ear this time, and so that really scared me and that’s actually how I’ve ended up finding the Silverstein Institute here in Florida because I was doing research to try and figure out what I could do.

Richard: So you’re visiting here from Denver because you’ve heard that Silverstein is the best Institute dealing with Meniere’s.

Chery: That’s true, yes.

Richard: Where did you find out about him?

Chery: I actually just found a YouTube video. I was researching and researching and I found a video that he was interviewed, and it’s the first time I had ever heard a doctor say, Meniere’s patients are just told that they have to live with it and there’s nothing that can be done for them. That is not true. There are things that we can do. And when I heard him say that, I was like, “Where is this man? I have to go find him.” So, that’s how I found the Silverstein Institute.

Richard: It’s all about the education. It’s all about finding out what the truth is of your disease [inaudible 00:06:06].

Chery: Absolutely.

New Speaker: Absolutely. There’s very, very few physicians that are high level specialists in Meniere’s disease. They’re hard to find.

Richard: So you were very lucky to find them.

Chery: I was absolutely.

Richard: Since this happened about 20 years ago when you had your first attack, am I right?

Chery: Mm-hmm (affirmative). Yep.

Richard: What happened to your career, your family? What was going on at that time?

Chery: Well, like I said, Meniere’s is progressive and different patients have different triggers. My triggers for attacks and that caused it to get worse in general are fatigue, so lack of sleep and dehydration if I don’t drink enough water and also stress. I was married to an abusive husband for 27 years. I had six children and ran a mortgage company, so my stress level was extreme. So I’m assuming that’s why I got it to begin with.

Chery: I continued to manage that life until it was about the time that, or maybe a couple of years before I left my ex, so it would have been about 2009 that this happened. I’d be sitting at my desk working with someone or taking a loan application, and all of a sudden have an attack, like a drop attack that was just instant and I couldn’t finish, I couldn’t function.

Chery: When that happened. I actually quit working and then went into applying for social security disability and all of that. I’ve been on SSDI for about eight years now.

Richard: I want to ask you about the relationship with your husband. Did he leave because of the disease, because of what you’re going through or was that something separate?

Chery: No. I actually left him. His abuse was primarily emotional and psychological.

Richard: Okay. That’s fine.

Chery: So because he wasn’t hitting me, I didn’t recognize that I was being abused or that my children were. I knew there was a problem, but it was like I couldn’t put my finger on why. I always thought it was my fault, which is very typical. I’ve learned a lot about abuse and how it all functions since then, but when I realized that’s what I was experiencing, I just said, “I’m leaving. I’m not going to stay in this.” And so I did.

Richard: I appreciate your telling me that because a lot of what we talk about in the Hearing Loss Association is the relationship issues with hearing loss with their spouse or significant other, and that’s why I was asking you if your hearing was had something to do with that relationship.

Chery: Yeah. Well, it did in that I truly believe that the stress that he caused by abusing me and of course the children, I was his primary target, but I believe that that stress was probably the reason. In fact, I have an aunt that says, “It’s so interesting that he abused you with words and it was your hearing that went. It’s almost like your body knew that’s what needed to go.”

Richard: Okay, that makes sense. Your career changed. You couldn’t use the phone anymore. You can use the phone-

Chery: I can use the phone because I do have perfect hearing in my right ear to this day. So I can use a phone. It wasn’t the phone that was a problem for me. It was the attacks at the time. The one thing with the phone that’s true, if you have any other people that have single-sided deafness like me, you can’t talk on the phone and understand anything else that’s going on around you. So you know how a lot of times you’ll be talking on the phone and somebody will talk to you thinking you can hear both people? It’s like, sorry, that’s not happening.

Richard: You know, that’s very interesting because a lot of people with normal hearing can’t multi-task either if they’re on the phone. They can’t understand what anybody is saying, so it’s not necessarily the hearing issue in this case.

Chery: That’s true.

Richard: So you had support from your family?

Chery: My kids have been incredibly supportive. Yes. I’ve been very, very fortunate. That makes me emotional when I think about it.

Richard: That’s okay.

Chery: They have been there for me in ways. Right now, I have an elderly mother that has Alzheimer’s. I’m her caregiver. My daughter is taking time off work to take care of her grandmother so that I can be down here and do this. So I’m very, very blessed to have amazing kids. Yeah.

Richard: You know you have perfect hearing on one side so that when you’re taking care of your mother you have full access to what anybody’s telling you, which-

Chery: Well, that is one of the reasons why I really feel strongly about needing a CI. There’s a couple of things. One, I have zero directional hearing, so if there is a sound that happens that I need to know what’s going on, it is completely impossible for me to tell you where the sound is coming from. That’s one thing.

Chery: I very often sleep on my good ear, it’s actually easier to go to sleep that way. So I go to sleep on my good ear. If something happened with mom while I was sleeping, there’s no way I would know.

Richard: Do you still have tinnitus from the…?

Chery: I have severe tinnitus in my left ear. I’m profoundly deaf in my left ear and just since this last attack in June, I have tinnitus in my good ear now. Tinnitus and fullness in the ear that comes and goes. The tinnitus is worse, but yes, so these are the reasons I’m concerned about possibly going bilateral with them in years.

Richard: Even if you have a operation and you get a cochlear implant on your deaf side, you’re going to take it off at night and you’re still going to be deaf on that side.

Chery: I’ve thought of that, yes, and that sort of is what it is. One of the questions that I’ve had is can I leave it on? And if that side is up when I’m sleeping on my good ear, can I leave it on? That’s one of the questions that I had for you actually.

Richard: That’s going to be a great question to ask because generally they tell you not to wear a cochlear implant at night so that your brain gets some rest.

Chery: Okay.

Richard: But I’m not a doctor, I’m not a surgeon. It’s another side of the coin without going-

Chery: Well, we’ll definitely ask Dr. Wazen.

Richard: We’ll get there when you get there.

Chery: Yeah, yeah.

Richard: So your expectations are?

Chery: Well, I am having a labyrinthectomy done on the 19th of November, so that’s in about three weeks. And that I’m really excited about because when they take that out, the labyrinth is the balance center of the inner ear in the affected ear. So when they take that out, it stops the vertigo in its tracks. So for the first time in 20 years I’ll be able to drive. I won’t have attacks anymore.

Richard: Why couldn’t they have removed that long ago?

Chery: They could have if I had known about it, but I didn’t. I never ran into a doctor that even told me about it. When I heard Dr. Silverstein say he could do something for me, I was just like, “Wherever I have to go, whatever I have to do, we’re going to get this figured out.”

Richard: It is very common in the sense that most doctors, general practitioners and people who are not in the ENT side of the medicine, they’re totally ignorant about cochlear implants.

Chery: Yes. Even ENTs. So I saw an ENT, and of course, I won’t mention her name, but I saw an ENT before I came down here and all she did was give me a diuretic that also lowers your blood pressure. I do not have high blood pressure. It caused me to pass out dead cold on the floor from that particular medication. It was like, clearly this is a specialist, it was an ENT, but she does not have a clue about Meniere’s disease.

Richard: It’s always true. We struggle till we find the right doctor, no matter what our symptoms are.

Chery: Yes, yes. That’s very, very true for Meniere’s patients. It really is. Just like you’re on a Facebook for a cochlear implant, I’m on another one that’s for Meniere’s patients, and it’s just daily that there’s posts on there where people can’t find a doctor that can really help them. Yeah.

Richard: Oh, my gosh.

Chery: So I’m very blessed and grateful. Very grateful.

Richard: We call our guardian angels watching after us to find the right doctor.

Chery: Yes, exactly. Really, really grateful. Yeah.

Richard: Let me ask you a little bit more about the operation. As you understand it, they’re going to be removing the balance center.

Chery: The labyrinth. Yeah.

Richard: Now simultaneously. They’re going to be inserting a cochlear… Right?

Chery: That’s I’m here for right now is to do the cochlear implant evaluation and we are shooting for approval with the insurance company, which Dr. Wazen thinks that we can get done so that when he goes into the labyrinthectomy he can also put the cochlear implant in at the same time. That’s the goal.

Richard: This is a brand new aspect of cochlear implants the single-sided deafness.

Chery: Yes.

Richard: Until recently, doctors who were doing it were doing it outside the prescribed regulations because single-sided deafness in cochlear implants, insurance companies don’t want to pay for it. Medicare wouldn’t pay for it. It’s just a growing issue right now.

Chery: Well, there’s good reason for it. So for example, like I said, I have six children. They all have significant others. Now, they’re older and grown and out of the house. Just a month or so ago, I went to a restaurant with all of my kids and my new husband for dinner with a family. Right? I may as well have been completely deaf. I could not hear anything that anyone had to say.

Chery: So that is a reality for people that are single-sided deaf, is that there’s all kinds of little things that you don’t expect, and I’m sure insurance companies that make these decisions wouldn’t know. I have actually written a letter to them to be submitted with my CI evaluation just about quality of life. So that entire time I sat there for an hour. I enjoyed watching my family laugh and have a good time, but I was not part of it.

Richard: But you were in isolation.

Chery: I was completely isolated. I would drive down the road with my husband and he tries to talk to me. My deafness is in the ear that’s towards the driver’s seat. I can’t hear him when he talks to me. He has to speak up loudly and I have to turn and look right at him to be able to hear him.

Richard: I had to lip read for 35 years while I was driving.

Chery: I cannot imagine that. Your story is so incredible to me. It really, really is.

Richard: So you’re hoping to get that aspect?

Chery: Oh, absolutely. And the directional hearing, able to hear where things are coming from, able to drive again. The labyrinthectomy is going to give me that ability. I’m really excited about that. But the hearing piece for me is there’s so much that I’ve missed and I know that. My family surprised me with… I have a son that was gone to Germany with the military for three years and I hadn’t seen him in three years. And they surprised me by having him be in my house when I got home. I made a trip to Texas and came back and walked in the house and there he was.

Chery: One of my other sons said something early, would have ruined the surprise, right beside me. But he was on my deaf side so I completely missed it. So in that case, it was a good thing because the surprise was amazing. But how many-

Richard: Your son might have surprised you didn’t react when he-

Chery: No, no. He knew.

Richard: But you didn’t react when he said.

Chery: It was one of those things where I heard somebody on this side say, “She didn’t hear you,” and I turned to look and he just kind of walked off and I was like, “oh, well I guess it wasn’t…” You know, whatever. And later I found out that was-

Richard: Does your family ever use the expression when you couldn’t hear something, oh, that’s not important or I’ll tell you later?

Chery: Oh, all the time. All the time.

Richard: How does that make you feel?

Chery: Oh, it just frustrates me. I’m pretty outspoken now.

Richard: Let’s talk about it.

Chery: I didn’t use to be.

Richard: Let’s talk about that for a bit.Never mind.

Chery: I didn’t used to mind. Yeah. It’s okay.se to be, but now I’m just like, “Don’t do that to me. If you spoke something, it was because you intended for me to hear it. If I didn’t hear you, I’ll turn around so that I can hear you, but don’t just go, ‘Oh, never mind. It doesn’t matter.’ If it didn’t matter, you wouldn’t have said it in the first place.”

Richard: Exactly right.

Chery: So I’m pretty open about it. But yes, it happens all the time.

Richard: We talk about that all the time at the hearing loss association meetings. It’s the most painful when somebody says, “Oh, it doesn’t matter.”

Chery: It’s almost like discounting that you are in the room when they say that. That’s how it feels. The other thing, and this is my bad, I’m not good at saying what enough. So I will assume that I understood what they said, and I’ll respond and they’re like, “No.” I did that to [Chavez 00:00:19:02] just… Was it yesterday? Yeah.

Richard: You do know you’ll continue lip reading after you get this anyway.

Chery: I actually hadn’t thought of that.

Richard: You will. It still becomes a very natural part of your life to be lip reading them. I can understand somebody if I’m not watching them, but if I’m talking to somebody-

Chery: You’re still doing it.

Richard: You still lip read.

Chery: Well, I naturally, without thinking of it now, always turn my good ear side to whatever. So if I’m sitting down anywhere-

Richard: That [inaudible 00:19:30].

Chery: I want to turn that way so that I can be a part of what’s going on.

Richard: You’re going to hopefully have the operation. You’re still in the stage of evaluation, and if they go ahead, you’ll come back to the operation and you’ll stay for how long?

Chery: The operation will be on the 19th of November, which is in about three weeks, and then I’ll stay here in Florida for two weeks and then fly back. Dr. Wazen did give me permission to fly two weeks after, so go back to Denver.

Richard: Will you be activated here or back in Denver?

Chery: I don’t know the answer to that question.

Richard: We will find out.

Chery: Yeah, yeah.

Richard: That’s fine. That’s okay. That’s fine.

Chery: From what I understand, the major part of Cochlear is in Denver so we may be able to get me activated up there.

Richard: You understand what I’m trying to do here is part one of a two-part interview.

Chery: Yes, I do.

Richard: We’ll do another interview by Skype. When you get back and you’re activated, and we can talk about the changes then.

Chery: Sure.

Richard: Because I want to know how you’re feeling now, what you’re looking for. Do you have any hobbies that depend on your hearing or…?

Chery: My dad was a music teacher and I grew up with music all around me. Always loved it, had a very powerful singing voice as a younger person and did a lot of singing through school, a lot of solo work and that kind of thing. I can’t do that anymore because my hearing is… You would think that having hearing in one ear would be good enough to still be able to hear tones and stuff, and it is sometimes, but it’s not consistent enough for me to rely on it.

Richard: That’s going to be very interesting to follow up on because the cochlear implant, music, it’s a very personal topic and I’m looking forward to seeing if you get your voice back.

Chery: It would mean the world to me to be able to sing again. Yes. That’s in the letter that I put together for… Hopefully the insurance…

Richard: I wish I have the letter.

Chery: I’ll get it to you. I can email it to you.

Richard: If you send me letter, I’ll read it out.

Chery: Sure.

Richard: And add it to this before we post it.

Chery: Absolutely.

Richard: I would love to see that.

Chery: I’m happy to do that.

Richard: If this works, Lord willing, this works, what are your goals for the future when you have the implant?

Chery: I want to get off of social security disability. I want to work again. I want to drive again. I’m going to have my life back by the grace of God.

Richard: They’re all doable. Everything you said is doable.

Chery: Absolutely. I think it is. It’s kind of surreal. It’s like, I’m going to have my life back.

Richard: I know you’re tearing up with the thought, but that’s fine.

Chery: Yeah.

Richard: We all walked in your moccasins, but you have slightly different ones.

Chery: I do. I do. And I have a real passion for helping people that are in my situation. So because there’s so many circumstances where people look at you and they think you’re fine and-

Richard: It’s an invisible disability.

Chery: It is invisible and it’s really difficult unless a person has been there with you when you have an attack or has been deaf, so they live with that kind of issue. They don’t really understand. So it gives me a real passion to reach out to people that are struggling with what I’m struggling with, especially on the other side, after being able to, like I said, Lord willing, being able to drive again and all of those things, and just reach out to people and say, “Hey, there’s hope.” You don’t have to live for 20 years like I did with this.

Richard: Now that’s fantastic attitude. That’s what I love to hear. As far as choosing which company you’re going with, you haven’t a made decision yet. You’re doing that at some point with Dr. Wazen and Dr. Silverstein, I’m sure.

Chery: Yeah, I’ll probably go with Cochlear. I’ve already been in contact with their rep and I just adore her. She’s amazing. So I can’t imagine looking elsewhere, but that’s just my personal experience.

Richard: Anything you would like to add for people who are potential candidates who might be sitting on the fence?

Chery: I understand the fear. I think for the same reasons that a lot of people are afraid, but to me it’s like life is short just get it done so that you can enjoy it to the fullest. We’re only here for so long and we never know exactly how long that’s going to be, so don’t hold yourself back. That’s how I feel about it. I’m jumping in with both feet, man, double surgery in the same day.

Richard: All right. I hope you’re up dancing in the aisles by [inaudible 00:23:52].

Chery: Yes. Yeah.

Richard: All right. Well, Chery, I thank you so much for your time.

Chery: Oh, thank you.

Richard: I really appreciate your insights and I’m sure other people who are candidates for cochlear implants are going to get quite a bit from this. Thank you so much.

Chery: Well, thank you, Richard. I really, really appreciate what you’re doing. You empower people and that’s admirable. I really appreciate that.

Richard: Thank you so much.