Hi everyone! I hope you all are doing well. The bilateral CI life is treating me well. My word recognition is at 98% bilaterally and if we weren’t masked (double and triple ply) I’d be able to understand most anything. Do I still practice? Absolutely!
What is my best story since I’ve become bilateral? Well, it’s actually a sad story. I’m all about the positive, but there are some sad things my implants have allowed me to do.

This year has been difficult for all involved. It’s been especially difficult on patients hospitalized with COVID and their caregivers.
Most recently I cared for a person at the end of life. The family was snowed in several hours away. I clocked out, set up the video monitor and called the family. My Eko stethoscope was gingerly placed where I could hear my friend’s heartbeat while I sat nearly under the bed and held the hand of a dying father while his daughter cried and said “Dad, I’m holding your hand.” I’d squeeze his hand to let him know he was not alone. “I’m with you Dad. I’m singing your favorite song Daddy. You are my sunshine, my only sunshine.” All the while I held his hand. I stayed tucked under the view of the video in hopes the family didn’t feel I was intrusive.
The heart beat slowed, breathing slowed to a few breaths a minute and their father passed away peacefully holding my hand as proxy to his daughter.
My implants made this possible. My implants allowed me to return to my job as a nurse. My implants allowed me to be uprooted and deployed (I don’t like this term) to another hospital and begin the life of a COVID nurse. My implants allowed me the honor of hearing the last heartbeats of the loneliest people in the world. They provided me with hope for a better future for myself and now I work to provide a better future for our families and those recovering from COVID.
Never sell yourself short. Being deaf doesn’t define me or limit me. It made me a better nurse, mother, and wife. The implants gave me the ability to communicate properly and effectively. If you are ever having doubts, think of me. If I can do this every day. Anyone can.
Much love to you all in your journey.

Transcript

Speaker 1:

Cochlear Implant Basics is a site for candidates, and their families and friends. If you have been told, you qualify for a cochlear implant, these podcast interviews tell, how receiving a cochlear implant can be a life-changing experience. You will meet recipients who face a hearing loss, and the hearing aids could no longer provide comprehension of speech or music. They faced growing isolation, inability to socialize, or compete in the world of business. The joy of music disappeared. They explain how receiving a cochlear implant changed their lives.

Speaker 1:
Welcome to Cochlear Implant Basics. A reminder: Cochlear Implant Basics is not sponsored by anyone, nor is it offering medical advice. Please consult your own healthcare provider.

Richard Pocker:
Good morning.

Suzanne Tillotson:
Good morning.

Richard Pocker:
I’m talking to Susan. And could you tell me your name, where you are, and today’s date.

Suzanne Tillotson:
My name is Suzanne Tillotson, I go by Susan. I’m in Greenville, South Carolina, and it is May 10th, 2021.

Richard Pocker:
Now tell me a little bit about your hearing loss, how did it occur, how old were you, and so on and so forth? I’m going to let you have the floor.

Suzanne Tillotson:
I have Meniere’s disease. I’ve had Meniere’s disease probably from a very, very young age. Because, my mother tells me that I would have dizzy spills, and spin and fall, and my brother would hold me, and help me, and try to calm me down, because I was always scared. I didn’t start having hearing loss though, until my late twenties. It was very, very mild. Everyone said don’t worry about it. I worked for an ophthalmologist, who didn’t really believe that it was real, and that the Meniere’s disease was actually a thing. So, it actually prolonged me getting help, because I really believed in everything she said. But a little bit later, when I started having more vertigo, I got to the point where I could not walk. I could not function. I was dizzy all the time, throwing up all the time. And, I met a doctor named Habib Rizk, and he determined that it was in fact, Meniere’s.

Suzanne Tillotson:
I had been diagnosed by a local EMT, who didn’t know anything about Meniere’s, but didn’t know anybody to refer me to either, at the time. Dr. Rizk, however, he studied Meniere’s disease in Lebanon. And, it was a passion of his, that he was going to come to the United States, and he was going to take control of this. And, my husband took me to my medical doctor, carried me in, and said, fix her. And the medical doctor, standing there with his mouth open, going, oh, well I can’t, but we’ll find you someone who can. And they sent me to Charleston. I actually, that was six years ago. So, through treatment to get my balance back, we also started working on my hearing. So he tried hearing aids for a little while. They did not work. My vertigo got worse. I had an endolymphatic sac decompression, and shortly after my recovery from that, I got hit by a patient, and it destroyed the ear. So then, I had to have a labyrinthectomy. And, that was my first experience with a cochlear implant.

Richard Pocker:
Did they do it simultaneously?

Suzanne Tillotson:
No, they did it a year apart, because I had other physical damage. That one’s hard to talk about, but I had broken nose, lost teeth. There was a lot.

Richard Pocker:
Because, we have one other interview with Meniere’s patient, and she had the labyrinthectomy and the cochlear implant done, simultaneously. So, you’re in a different situation.

Suzanne Tillotson:
That’s normal. That is normally how that would be done. But, since I had other damage, and I couldn’t walk, and there was so much to it, I couldn’t even talk. There was a lot to that.

Richard Pocker:
And, had the one done. How was the rehab, when you had the first one done

Suzanne Tillotson:
Well, I was very, very dedicated to vestibular therapy. So, when I knew that this was going to happen, I knew the surgery was going to happen. I’ve just hunkered down, and did the vestibular therapy with the PT offices, and then I learned a way to do it at home, by myself. So, I’m modified their therapy, to fit a one person therapy, and did it all, every day. I mean, an hour every morning, every day, to where I got to work, I’d walk straight, everything. If I left my labyrinthectomy the day I had it done, most people stay in the hospital a couple of days, and I left. We ate dinner after, and it was a four hour drive. We stopped halfway, and I ate dinner, and he tells me, that it’s because I did all the vestibular therapy before. It is terrifying, because the explanation of the surgery was that it was going to be difficult, I’m going to be very ill after, if I’m up at all, I’m going to rely on a walker. I did use a cane, for a little while.

Richard Pocker:
Okay. And your hearing, when you got the cochlear implant, describe that, the activation.

Suzanne Tillotson:
See, I wasn’t expecting anything, because I was still hurt. I was still internally hurt, by the whole thing. So I wasn’t expecting really great things. The day I got activated from my cochlear implant, on the drive home, he called me and asked me how I was feeling. I had already hooked it up to my phone.

Richard Pocker:
Oh my god.

Suzanne Tillotson:
Playing with it. So, I had already hooked it up to my phone, and was trying to hear little dots, and beeps, and everything. Well, he called on my phone and I answered it. But I answered it with my cochlear implant, I didn’t realize it. And we had a full conversation through my cochlear implant the day I was activated, and I said, I’m hearing you through it now, I can’t believe this. And I was able to have a full conversation. Words, like we would be having right now, because I’m not connected to the computer, or harder for me, that took rehab. So I’ve used this ear only, I’ve read out loud, I’ve listened to old music that I grew up listening to, which in my case, it’s Elvis, because that’s when my mother loved. And, it was just great. That’s how I did my rehab. I did my rehab, he told me I overdid everything. I’m his all-in girl.

Richard Pocker:
I think the lesson learned here, is the fact that when rehabilitation takes place, you can’t make it wrong. You just have to be dedicated to doing it. You can’t expect it to happen overnight. You had a rock star activation.

Suzanne Tillotson:
I did. I had a rock star activation, and he tells me that, because when I got my other ear done, he told me not to expect it to be like the first one.

Richard Pocker:
Well, that’s a very good point. Tell me about the second one. How did that go?

Suzanne Tillotson:
The second one was, the past October a year ago. So 2020, I had sudden hearing loss in the right ear. For about a week, I heard a high pitch roar, and then it was gone. It was nothing. It actually, was scary, horrifying. And it was from an activation of the Meniere’s, on that side. And then the trauma that I had previously, he says associated with that. I knew right away, I want a cochlear implant. There’s no second guessing that.

Richard Pocker:
Did the same surgeon do the second one?

Suzanne Tillotson:
Oh yes.

Richard Pocker:
Which hospital?

Suzanne Tillotson:
MUSC at Charleston. Medical University of South Carolina.

Richard Pocker:
Was the second activation as good, was the first, or?

Suzanne Tillotson:
It didn’t come off without a hitch, like the first one. I chose a different mode. I have an N7 on this side, but it wasn’t, right here. Since the N7 is more flexible, I put it on the ear that I had a little flexibility with. With this ear, I have no flexibility, cause I had a labyrinthectomy. So, I can’t do different things with it, because of that.

Suzanne Tillotson:
So, I ended up with a Kanso over here, which is what I originally chose for this year. So with the Kanso, they put it on, I was immediately disappointed when they activated it, because it was Alvin and the Chipmunks, that’s all I could hear. And before, I didn’t have the Alvin and the Chipmunks sound. This time, it was nothing but Alvin and the Chipmunks. Everyone sounded like it. And I was just waiting on Dave to talk, Simon, and Theodore, and Dave.

Suzanne Tillotson:
And, I was depressed for a few days, because it was so different. But I took off my processor over here, and I started reading out loud, I started listening to the music. I started doing everything that I’m supposed to do, that I didn’t on the other ear. It took twice as long. I did not have any vertigo with the surgery, because of the rehab that I do every day. But it took a lot longer. But now, I mean, it’s not even been a year that I’ve had this implant. So, I can take this one off, and function perfectly over here. Because that’s still considered a part of the rehab for it.

Richard Pocker:
Would you ever get another N7 for the other ear, at some point?

Suzanne Tillotson:
For this side? No, I like the Kanso. I get better sound quality out of this ear. I don’t know why there’s a difference, but I still get better sound quality over here.

Richard Pocker:
It’s interesting, because I like to use the phrase, no two hearing losses are exactly the same. Those individuals are fingerprints, and the rehabilitation’s the same way. And you’ve shown that with two different modes of cochlear implants, that you can still function very well. I’d like to ask you a little bit more about your career, and how the cochlear implant had an effect, on what you do. Talk more about what you do for work, and your life.

Suzanne Tillotson:
I’m a nurse. I’ve been a nurse for almost 19 years. And, I thought that my hearing loss was going to end my career. And most people did. Most people go into this, thinking that they’re [inaudible 00:10:20]. I talk to people online all the time who think, okay, I’m not going to be working anymore. And I’m always like, no, you keep going. You keep trying, you keep working and you can do it. So being a nurse, we use stethoscopes that go inside the ear. They don’t work, because you can’t hear. So, I use an Eko, an Eko CORE, and it actually transmits through my processors, now. That’s actually a new thing they have. It normally would go through your phone, and then go to your ears. But now, I compare my stethoscope with my processors. But the last year, since COVID hit, they call it deployed.

Suzanne Tillotson:
I’d never considered us fighting in the army, being in the war. But we were taken from a hospital that was for med surge, appendectomies, gallbladder surgery. I see you have your surgery. I make sure you’re good. You eat, you drink, you go to the bathroom. You go home. I liked that. I liked seeing that progress, that you do. When we were brought over to this other hospital, I see people who are sick and dying, and they can’t breathe. They’re struggling. And the only way I can do my job, is because I have my implants. Because, I would not be able to hear them breathe. I would not be able to hear their hearts beat. I would not be able to listen to their fears, or at the beginning, be their mother, sister, daughter, niece. You have to be everything for that patient. And if I should not hear them properly, I would not be able to do it at all.

Richard Pocker:
But you were able to do with the cochlear implant?

Suzanne Tillotson:
Yes, absolutely.

Richard Pocker:
That brings me to a very interesting point, because I read recently about, I believe the pronunciation is, auscultation , The ability to hear the heartbeat, or hear through the cochlear implant. The internal sounds are so critical, that if you don’t hear them exactly right, you may not be functioning properly. You may not get the right diagnosis. Could you talk a little bit about how you hear through the stethoscope?

Suzanne Tillotson:
At first it was through my phone, and then it was sent from my phone, to my ears. So I trained myself, while I was out. I had downloaded videos of normal heart sounds, and I listened to those through my stethoscope, for several weeks. Then, I started listening to abnormal heart tones, and now I’m proficient. I’m more proficient now, than I was, before I had my surgery. Before I lost my hearing, because I didn’t put this much time into learning normal and abnormal heart tones, before I lost my hearing. But I was determined, that you’re going to know what you’re doing, because you’re not going to screw this up. So now, I have this Eko stethoscope that I can unhook, and put on a person’s chest with enough pressure. I can be doing something else, while I’m listening to their heartbeat. So, especially if they’re asleep, and I can listen to their rhythms, and I can listen to that heartbeat.

Suzanne Tillotson:
And especially if a patient is not doing well, and is going to pass away, and you can listen to their heartbeat, and hear that, okay, they’re not progressing, this is going to be the day. I need to prepare their family. But I had to train myself first. So I downloaded audio recordings of normals, abnormals, all of it, while I was out on leave. That’s what I learned to do.

Richard Pocker:
You’re unbelievable. You are a total inspiration. People are going to listen to this, and understand. I hope that having a cochlear implant makes you unstoppable.

Suzanne Tillotson:
Well, I’ve been unstoppable, so far. The only time that it catches me off guard, is when I lean against, say metal, wall, or door jam, and this one flies off my head. And then I’m like, I’ve dropped it. And you crawl around on your hands and knees, thinking you dropped it, and there it is, all [inaudible 00:14:32] because the magnet is so strong.

Richard Pocker:
How many people have left it on their car doors, drive away, find it at the other end of the ride?

Suzanne Tillotson:
This happened at a nail salon. And I stopped this lady from getting in her car, because I didn’t know where it went. And I’m on my hands and knees, and she needs to leave. And I’m really sorry lady, but if I lose my implants, I’m toast. So you’re going to have to wait. It was on her car door. I had a lot of fun with my implants, because there’s a lot of stimulation that people have to get used to, especially when you’re bi-modal. Once you have bilateral hearing, all this extra sound comes in, that you haven’t been used to for a long time.

Suzanne Tillotson:
And in my world, it’s very loud in my family, and my work, and everything. It’s all very loud. You have to unplug, sometimes. And after a major event at work, at first it’s loud, and it’s hard to concentrate on one person, when it’s loud, especially when we’re wearing two masks, head gear, all this gowns, and everything. And you can only hear the movement of your gown. And you’re trying to focus on a doctor. At the end of that, I would go in a little room, and take off both of my processors, just sit there, and unplug for just a few minutes, because there was so much stimulation. That was a challenge for me.

Richard Pocker:
I hear that all the time, that I’m overstimulated. I need to take a break. Everybody’s different. And including the scan programs on your individual processors, people like different ways of hearing.

Suzanne Tillotson:
If I’m having an emergency, I click my phone, I change it to a different program, and it’s, Direct Focus is what I use, so I could hear the doctor, only. And it helps knock out everybody behind me. And I can run that code with my doctor, and I can hear him better, or her better. Whoever’s giving the orders. I know how to run a code, but you have to wait and see, what this doctor wants to do next

Richard Pocker:
Yeah. One thing I’d love to talk to about, was because your hearing loss was relatively late, relatively sudden. Talk to me a little bit about your coworkers. The doctors you work with, the other nurses who work with, were they cooperative? Was a problem? They knew you had an issue?

Suzanne Tillotson:
Yes, I was very clear, cause I had to get a new job after I was injured. So, I came into this job that I have now. I was so open about it, that I wanted her, the person that I was going to work for, who I didn’t know I was going to get this job with, I am deaf. I’m going to have other surgeries, because I hadn’t had my right ear done yet. And I needed her to understand, that at this point, I’m not normal yet. I’m going to be, but I’m not there yet. And I was still having some episodes of the dizziness. And at first, it took her by surprise that I was so honest about it. She hired me on the spot. Because when I left the other hospital, I was devastated. Like two weeks, I was devastated. Didn’t do anything. And then, I put it on resume, and I got 23 phone calls in 48 hours. That changed my whole world. I went with one interview for a place that I wanted to go. And she hired me on the spot, and it changed my life.

Richard Pocker:
Talk a little bit about your future. I understand you’re going through more studies for advancement. Tell us what you’re doing, and where are you going to be?

Suzanne Tillotson:
Well, I think I’m going to end up finishing it in Clemson, which Clemson University, is where I got my Bachelor’s Degree in Nursing, because I started out slow. I got my Associates Degree, worked as a nurse, went back, got my Bachelor’s Degree. Worked as a nurse, was getting my Master’s, my Nurse Practitioner’s License, when I got injured and had to stop, because I could not do all of it. I could not get well. I focused on getting well, and do that too. It was a lot. So I’m going back, but I’m going to do Nursing Administration and Leadership, because I want to be a leader on the field. I want to be the person that says, yes, you can do this, but you’re going to have to work at it. Because, that comes in nursing too. You don’t walk in out of school, and know how to do everything.

Suzanne Tillotson:
You know the basic function of life, but you don’t know the basic function of how a hospital operates, or the machinery. And I want to be the person that helps those people. You can do this. I met a nurse who was losing her hearing, and she was just starting out. And she came in, and realized that she just couldn’t hear well enough, to hear the heart sounds. And so now, she is getting a cochlear implant. So it’s like, this happened to me in a really bad way. And then the injury and everything, had happened in a really, really bad way. Also, [inaudible 00:19:46] for like a week. And then, all right, I’m done. Let’s make this work for some other reason, this had to happen, so I could do something with it. And I’ve met several people now, who’ve had implants, because you can do this, and call me. I’ve got you. It’s been really nice. That’s what I want to keep doing.

Richard Pocker:
You never know who you’re going to help. You never know what their future is going to be. You have a mission. I have a mission.

Suzanne Tillotson:
You have a mission, yes, and love your mission.

Richard Pocker:
And we have to talk to people, who are scared to death, that they’ve lost the hearing, scared to death about a cochlear implant, because they have misconceptions, brain surgery that it’s going to sound mechanical. So we both have a very parallel mission. And I really, really appreciate the time you spent with me, I’m sure your story is going to inspire others to move forward. Do you have anything you’d like to add, before we close?

Suzanne Tillotson:
Just that I’m really glad to have met you, and talk to you. I’ve read things that you’ve written, and what you’ve written to other people. And I think that your mission is so important to get this out there to everyone, because we are definitely a minority. You don’t realize it, until you experience it.

Richard Pocker:
Thank you for being part of the same journey. I appreciate your time. I hope you have a chance to speak again soon, and we’ll take care.

Suzanne Tillotson:
Take care.