Single-Sided Deafness & Cochlear Implant Journey: A Teen and Parent Perspective

What does it really mean to live with single-sided deafness?

In this episode of the EmpowEAR Audiology Podcast, I sit down with a mom and her teen daughter to share their family’s journey with single-sided deafness (SSD) — from diagnosis and daily listening challenges to the decision to pursue a cochlear implant and life beyond activation.

Although SSD can appear “invisible,” this conversation highlights the real impact it can have on listening effort, fatigue, confidence, and identity — especially in school and social settings. Together, we explore what it’s like to grow up with hearing in one ear, how cochlear implantation entered the conversation, and what families and professionals need to understand to better support students with SSD.

This episode blends lived experience with educational insight, offering encouragement, perspective, and reassurance for families navigating similar decisions.

If this episode resonated with you, please subscribe, rate, and share — it helps more families and professionals find the stories they need to hear.

For more information about Dr. Carrie Spangler- check out her Linktree at https://linktr.ee/carrie.spangler.

For transcripts of this episode- visit the podcast website at: https://empowearaudiology.buzzsprout.com

Transcript

Dr. Carrie Spangler 0:09

Okay, welcome to the Empower Ear Audiology Podcast. This is a space where we elevate lived experiences, expand understanding, and empower individuals, families, and professionals navigating hearing differences across the lifespan. Here on the podcast, we bring together education, advocacy, and real stories because hearing journeys are never one size fits all. Today's conversation is especially meaningful because we're talking about single-sided deafness, a journey that is often misunderstood. When someone has hearing in one ear, it's easy to assume that everything is fine. But families and individuals that living in this reality know there's much more beneath the surface. I am really honored to be joined today by a parent and her daughter, whom I've known for many years, and they are generously going to share their story. From learning about the diagnosis of single-sided deafness to navigating the decision around cochlear implantation and what that looks like now. So my hope is that this conversation helps families feel less alone, help professionals listen more deeply, and remind us that access information and support truly matter. So I want to welcome to the podcast, Michelle and Ryan.

Michelle (mom) 1:31

Hello, thanks for having us.

Dr. Carrie Spangler 1:34

I am excited for both of you to be here as guests. And I thought I would just take a second. I know you're gonna share a lot about your journey, but just to introduce yourself to the audience.

Michelle (mom) 1:46

Okay, I'm Michelle. I am Ryan's mom. And yeah, we've been on this journey for almost 12 years now. So we've learned a lot in the last 12 years. My name is Ryan. She's Ryan. She's in fifth grade and she wears a cochlear implant for single-sided justice.

Dr. Carrie Spangler 2:04

Yeah, well, thanks for being here, both of you. I'm really excited about this. So I thought maybe we should start from the beginning. So our audience has a little perspective of where we're going with this. So, mom, do you want to go back about 12 years and give us a little rewind?

Michelle (mom) 2:22

Let's do it. Yeah, so Ryan was born with sensor and hearing loss. Yes. I know I pronounced that wrong. Is it okay? Got it. I know. So she was born with it, and she was actually it was found in the newborn hearing screen at the hospital. So, you know, they come in and they test and they said, huh. She failed on one side, but not to worry, not to worry. It's probably fluid. We'll come back tomorrow. So they came back in the next day and they said, huh, she's failed again. And they thought, you know, it's real common. Don't be stressed out or anything. Don't worry about it. It's real common to have fluid in the ears. Just in, you know, it was a month or so later. We had to go down to Akron Children's and be tested, like fully tested. So we scheduled the appointment. We went down and they confirmed. They're like, Yeah, she definitely is hearing loss. But at a month old, they didn't know how severe it was. They just knew she had hearing loss. So that's kind of how we found out. I mean, she was just a teeny tiny baby.

Dr. Carrie Spangler 3:22

All right. And what kind of information or guidance were you given for your next steps then?

Michelle (mom) 3:29

At that point, we were referred out to ENT and they gave us like a one-pager, right? Here's a whole bunch of ENTs in the area, and you know, go call one that you want to call. So we just went down the list, you know, who's in our insurance and blah, blah, blah. And we found an ENT to start with. And then we also received a phone call, which I didn't even know was a service, right? But we received a phone call from Help Me Grow, which was so helpful because Ryan's our first child. We didn't know what we were doing. We knew nothing about single-sided deafness. We didn't know what kind of care she would need. We didn't know what we had to do to help. So Help Me Grow was wonderful. Didn't know they existed, like I said, but we got the phone call from them and they really helped with navigating through from diagnosis up until preschools when they kind of step aside and then she moves into the school district. But they were phenomenal.

Dr. Carrie Spangler 4:23

Good. And just for people that don't know, Help Me Grow in Ohio is like our early intervention services for birth to three. And they help families along that journey, whatever journey they happen to have. And just another little pause for those who are listening today. So when we kind of say single-sided deafness, in this situation, we're talking about someone who has little or no usable hearing in one ear, and then in the other ear, they have typical hearing. So that just kind of what Ryan was dealing with at a point in time. So then can you just keep going on your journey a little bit more? And what was your next step? So you got connected with early intervention and Help me grow, and then what happened?

Michelle (mom) 5:10

And they were wonderful. So we started seeing an ENT, and we went through so many ENTs until we found one that was a good fit for us and our needs and our family. So if anyone were to ask any type of advice in this situation, I would say just advocate and find an ENT you're comfortable with because they will just do wonders. So the first ENT just wasn't a good fit, but did recommend a hearing aid. And at this point, I mean, she's only a few months old. We don't know how bad the hearing loss is. So we get the hearing aid through that first ENT. And then we're like, you know, this it's just not a good fit. So we found a different ENT who basically said, Why would you even waste your money on a hearing aid? She doesn't need that. And we're like, Well, she already has it, so we're gonna like keep using it. So it seems silly not to use something we have. Ultimately decided that person wasn't a good fit. Went to another ENT who reviewed her chart and said, Oh, you've been through, you know, X number. What's wrong with you guys? And I was like, nothing, but we're we're done here. We'll go find another. Thank you for your time. Yeah. I mean, all that happened between, you know, her first fitting at a month or two up until three years old. I mean, so this was over the course of several years. And I think, Dr. Carrie, that's when we met you. And you referred us to like the gold standard of ENTs, who was just perfect for our family and for what we needed. But along that whole journey, helped me grow, really helped navigate. Okay, that ENT wasn't a good fit. Let's find you another one. And they kind of helped with like making those connections and navigating, you know, questions to ask. And they also helped with working with insurance, right? Because a lot of insurance doesn't cover hearing aids, cover cochlears, they don't cover hearing aids. So that was something wasn't even on your radar, right? Where as a newborn, not on your radar to have to pay for hearing aids. So they helped with a lot of that stuff too of okay, how do we, you know, navigate the financials of this? How do we navigate the insurance for this? Aligning us with different specialists and services that we didn't even know we had access to, that we had access to because of how she was born with her hearing loss.

Dr. Carrie Spangler 7:25

So help me grow and that early intervention is critical, especially for families. Like you said, you this is the first probably deaf and hard of hearing individual you've met, and it's your daughter, and all of a sudden you have all these specialists that point you in the right direction. And it sounds like eventually you got to a place where you felt heard and valued and could move forward with care.

Michelle (mom) 7:54

Absolutely. Yeah, and that early intervention really was key, right? Because we heard from several people like, oh, she's her other ear works, you're fine. But you lose so much by not having that like 360 hearing, right? You lose so much by your depth perception and just that surround, you know, where's the sound coming from? You don't have that when you aren't hearing out of ears. So, but we would have known that if we weren't aligned with the early intervention and just the right people kind of helping us navigate.

Dr. Carrie Spangler 8:27

Right. There is a lot of misconception around having one good ear and being able to kind of survive in in, but it's a lot of work to have only one good ear. That's right. Which kind of brings me, I think that is what you said. I I think I met both uh your family and Ryan when she was three, and she was entering into preschool, so kind of transitioning out of early intervention into more schooling and public school journeys. Do you have any thoughts about that part of your journey? Preschool?

Michelle (mom) 9:06

Preschool was it was really good. So she was able to get in in our school district into a program that it was limited. There were 12 students in a class, you know, six were there for a need, and then six were there as peers. And so it was really good for her to, you know, be around other kids her age and other kids that had hearing loss. And it wasn't specific hearing loss in the preschool, but and other kids that, you know, were just peer students. And then, you know, we learned a lot, right? That's where we met you and learned so much from you. Learned a lot in our school district. We're very fortunate as well to have to be in the district that we are because they provide a lot of services that I don't this is the only district we've been in, so I don't know what others have, but I feel like we are very fortunate to have you know what we have here.

Dr. Carrie Spangler 10:00

Yes, I agree too. And I remember meeting you guys for the first time. And at that point, Ryan, I think you had your hearing aid at that point in time, but because of the severity of the hearing loss, really, she didn't even know. It's hard for her to even hear anything out of that side. And I remember one of your goals was like to tell us if it was on or off, but you couldn't even tell us that because the hearing aid wasn't able to amplify, which I think kind of started the wheels turning to like your next step in that hearing journey.

Michelle (mom) 10:38

That's right. Yeah, and it really was, it was those preschool years where we learned where she was finally old enough, really, to tell us, like, okay, I really can't hear. And she was old enough to provide feedback in the audiology booth, in the sound booth, that the audiologist, I think you did do some testing on her, and then the audiologists at Akron Children's for everyone to finally say, like, okay, no, she really it's a lot more severe than we realized because she was just so young before that. So at that point, we were around that same time is when we were introduced to the ENT that did her surgery. And even that was unsure, I think, at the time of because it wasn't approved for single-sided, the cochlear wasn't approved at that point for single-sided. So, yeah, that in itself, we're like, we don't even know if we qualify. And we had been told no, you would never qualify for this because of her type of hearing loss. And then sure enough, through the ENT, we were able to get all the testing that we needed and decide, yes, this is a good fit and it will be beneficial to her.

Dr. Carrie Spangler 11:45

So, what were some of your feelings when you found out that a cochlear implant might be a good hearing solution for Ryan?

Michelle (mom) 11:55

You know, on one hand, you're like excited, like, oh my gosh, we've got this medical technology that she's gonna be able to hear. That's fantastic. And then on the other hand, she's at this point, well, she got it in 2020. So she was, you know, six years old at the time. So there's both sides of it. What are the advantages? Why should we do it versus what could go wrong? Why shouldn't we do it? But ultimately, you know, it it turns out essentially was you know, gifting her the miracle of hearing that she didn't have. So that's how we ended up moving forward.

Dr. Carrie Spangler 12:28

Yeah. So, Ryan, do you remember anything about getting your cochlear implant and just anything about that initial process?

Ryan (CI teen user) 12:40

I remember in like the room on the activation there. I remember being in the room and then putting it on for the first time. It was just really loud and just like confusing, and I didn't understand what was going on at all. Like it was just weird to put it on. And then I remember before the surgery, like, just feeling like I'd be able to hear again for the first time, basically. That's what I felt.

Dr. Carrie Spangler 13:10

And I think what you described, a lot of people describe when they first get activated, like it sounds weird and unnatural, and your brain is trying to figure everything out. How did you get your brain to figure things out? Did you do any therapy or did you just wear it a lot, or does it sound like that now?

Ryan (CI teen user) 13:32

I just wore it a lot more than my hearing aid. I feel like with my hearing aid, I would just like put it on for the school day and then just take it off the rest of like in that time. It wasn't that long that I was wearing it. I was only wearing it for like five or six hours a day, which I feel like is pretty bad. But when I got the cochlear, I feel like I wore it like all day, every day. Because I could hear actually. It wasn't just some random thing that was on my head.

Dr. Carrie Spangler 14:04

So it actually has some kind of purpose and meaning now that you're used to it.

Michelle (mom) 14:09

Yeah. She did do speech therapy for a while. It was a little unique, so 2020. So it was COVID time. Uh-huh. She did speech therapy virtually through Akron Children's, and they were they were amazing, but it was virtually. So it was a just another hurdle we had to get through.

Dr. Carrie Spangler 14:29

Yeah. And when you did the therapy, were you streaming just to your cochlear implant? Do you remember?

Ryan (CI teen user) 14:36

I don't think I was. I think it was just we had it, and then we had like speakers and stuff like that around it.

Michelle (mom) 14:45

We used the sound, the thing that you can plug into the TV through cochlear, I forget what it's called. But you plug it in and then that Bluetooth to her device. To her. And then because it doesn't bypass the speakers, so then I had to plug something else in so that she couldn't hear with her hearing ear.

Ryan (CI teen user) 15:07

Yeah.

Michelle (mom) 15:07

Yeah. So then I'd have to sit there with an earbud in, but far enough away so that because her other ear is very good. It is top-notch hearing. So I'd have to sit kind of far away, like far enough that she couldn't hear, but close enough so that I could still participate with the earbud in. Kind of help out a little bit. So it was a challenge doing it virtually.

Dr. Carrie Spangler 15:30

Yeah, and that's probably what needed you had to isolate that ear in order to kind of get your brain thinking because your good ear was doing most of the work for you. Today, you're such a great advocate for yourself and you at school. And I love being your educational audiologist because I feel like you really have grown in who you are. You advocate for yourself, you a great example to other students as well. But what do you wish people better understood about your single-sided deafness or your cochlear implant?

Ryan (CI teen user) 16:09

That just because like I'm not deaf in both ears, I can't hear nothing. Like people think that since I have a hearing aid, I can't hear at all, and they think that I just don't know how to talk or don't know how to hear like I should. But that's just wrong, and I wish they understood that more than they do.

Dr. Carrie Spangler 16:34

Yeah. And I know you've been a good advocate with your peers and your classmates too, like doing your own peer in service and sharing with your classmates about your cochlear implant and your hearing journey. Do you think that helps people to hear your story? Yeah, I think it does. Mom, do you have anything to add about her advocacy journey?

Michelle (mom) 17:00

It is something we worked really hard on that with your help. I mean, all the way from preschool of advocating and buying books on hearing aids. And I think we had like one superhero book with hearing aids in it. And it worked really hard on, you know, speak up and how to talk to your teacher and how to get their attention if you can't hear. And so we've kind of done that from day one of being in school. And I think that's been really helpful for her and then for her classmates to know that okay, just because you have this thing that you have to wear to help you hear doesn't make you any different than anybody else. So she's given presentations on it to her class, and I'm really proud of that. She does that. But we did work really hard as a little teeny tiny person in preschool, how to do that.

Dr. Carrie Spangler 17:48

And I think, yeah, the key to have that family support and you know, empowering Ryan all along the way at different age levels, how to be her best advocate, no matter what age you are. Ryan, I wanted to ask you too. I know at school you use microphone technology. Can you share a little bit about how that impacts your day?

Ryan (CI teen user) 18:15

So, like at school, when I'm there, the teacher puts the microphone on and I can like hear them better than if they didn't have it on. I can still hear them, but it just like improves the sound. And when like people are doing like presentations or we're in like a small group and it's like a very loud environment, they put it on and I can hear them better. When people like read in class, sometimes they're really quiet and I can't hear them. And when they put on the microphone, I can hear them. So it just basically helps in a lot of different ways that if I didn't have that, then I wouldn't be able to really hear and understand like what the teacher is explaining.

Dr. Carrie Spangler 19:01

Yeah, and Ryan, I have to say you have such a great way of explaining how you're hearing in different situations because I know we trialed like different ways for it to use the microphone from the speaker to just using a receiver on your cochlear implant, and then we ended up putting trialing the Roger focus on your good ear, and that's what you landed. You felt like having the microphone signal going into both ears was best for you. So I think that's just something for listeners to know. Like, I think it's important to involve, you know, the evidence based research, but let the student also be able to share what works best for them at school in different situations too. Do you feel like your confidence in listening has changed over the years? How do you feel about yourself?

Ryan (CI teen user) 19:58

I feel like it's changed. And I have more confidence than I used to and hearing and like just in general too.

Dr. Carrie Spangler 20:07

Good. Mom, do you feel that she's got more confidence or I do.

Michelle (mom) 20:13

I do. I mean, just she does advocate for herself, and I'm so so proud of her for that. And she'll say if she's in a situation where she really, even with her cochlear, she can't hear because it's picking up maybe too much, right? In a gymnasium or something, she'll kind of say, like, oh, I can't, I can't wear this right now. It's too much. And then in other situations, she'll kind of speak up of, Oh, I need you to turn my volume up because it's not giving me what I need. So she does. Yeah, she's I'm proud of her. Oh, she speaks up and educates. Yeah.

Dr. Carrie Spangler 20:45

Well, I wanted to ask a few more questions before we kind of wrap up today. And more for just our listeners who are professionals or you know, other families who are navigating single-sided deafness. What do you wish you would have known earlier in your journey?

Ryan (CI teen user) 21:06

That I can hear properly, and I'm not missing out on anything because I don't hear. And I feel like when I was in elementary school, people would make me feel like I can't hear like I can't do something. Or I can't do the assignment properly because I can't hear, right? Something like that.

Dr. Carrie Spangler 21:30

So you built a lot of confidence since over the years.

Ryan (CI teen user) 21:34

Yeah.

Dr. Carrie Spangler 21:34

Anything, mom, you wish you would have known earlier?

Michelle (mom) 21:38

You know, I d you don't know what you don't know, right? So I think going into it, we didn't know anything. So maybe the the benefits, I think just knowing the benefits of the cochlear implant versus the long-term effects of having deafness of any sort, right? And I think that was really beneficial. I I think we received it at proper timing, but I think that's something that because we received it so early, we were able to make that decision to move forward with the cochlear. So that's something I'm really glad that we learned early.

Dr. Carrie Spangler 22:12

What about other parents? I mean, that I know we had a lot of conversation before you made that decision. So, what would you want other families to maybe consider if they're thinking this path, but maybe they're hesitant or they want more information?

Michelle (mom) 22:31

I would say first and foremost, make sure you're comfortable with the surgeon. I don't think that we would have made the same decision with previous ENTs we'd been to if they'd recommended it. I don't know that we would have been as comfortable um making the decision. So that's number one is make sure that you know your surgeon, that your ENT is really a good fit for you. And then for me, it was just really helpful with the long-term effects, right? If we don't do it and she can't hear statistically, what does she look like in 40 years from now? Right. And again, nobody knows how she's going to respond in life and how her hearing will impact her in life if we don't get it. But statistically, the job outcomes aren't as good and career focus isn't as good. And there just there were just some pretty negative statistics where we have an opportunity to bypass all that and give her the best opportunity we can. And that's ultimately why we made that decision. So I think for other parents, just make sure you're comfortable with your care team. And yeah, the school was really helpful too with making that decision and and having the right audiologists in place was helpful for us.

Dr. Carrie Spangler 23:48

Do you have any advice, Ryan, that you would want to give to professionals who are out there who are working with students like you or patients like you?

Ryan (CI teen user) 24:00

Don't think because people are different, don't judge them at first. Like if someone's deaf, don't say like they can't hear me, I shouldn't trust them, or I can't tell them something because they won't hear me, or like something like that.

Dr. Carrie Spangler 24:17

Yeah, that's very good advice too.

Michelle (mom) 24:19

Now we just appreciate you having us on and letting us tell Ryan's story.

Dr. Carrie Spangler 24:24

Well, I want to thank both of you too for trusting me and our listeners with your story, because I think these conversations are really the heart of the EmpowEAR Audiology podcast because it that was lived experience and being able to expand understanding and helping families and professionals see a full picture is really important. And I know single-sided deafness may look different for every person, but your story just reminds us of the support and the information and the choices and that matter deeply for families. So for our listeners, I just want to say thank you for being a part of this community. And if this episode resonates with you, please consider sharing with another family or an educator or professional who might benefit from hearing this perspective. So thank you, Michelle and Ryan, for being guests today. Thank you. Thanks for having us. All right, until next time, keep learning, keep listening, and keep finding your frequency.