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All About Enlarged Vestibular Aqueducts (EVA) – Episode 67 with Dr. Laura Pratesi

“I don’t think that you have to have hearing loss to be a good audiologist, but I know that these experiences have made me a better one because I get it. I’ve been, like you said, on that other side of the sound booth, just as much as I’ve been in the shoes of the professional. And I just connect with my patients in a way that school can’t teach you. I mean, it’s my truth. It’s what I live with every single day.” – Dr. Laura Pratesi

Read the full transcript here

In this episode, Dr. Laura Pratesi of Citrus Hearing Clinic shares her story about her experience living with EVA. Citrus Hearing Clinic is an audiology practice based in Clermont, Florida. Dr. Pratesi was born with a unilateral hearing loss in her left ear, but she did not figure out the root cause of her hearing till her university years. While there were years in which Dr. Pretasi’s mother was concerned about her condition, doctors did not take her condition seriously and even thought that the use of a hearing aid would distract Dr. Pretasi’ with unwanted or loud noises during the day. Though after years of overcompensating and a trampoline incident, Dr. Pretasi was finally diagnosed. Her life’s situation along with developing a love for audiology after taking Audiology 101, eventually led her to her current career. Tune in to learn Dr. Pretasi’ story and find out why seeking the root of one’s hearing loss will tremendously add meaning and comfort to one’s life.

1:50: Dr. Pretasi’s in-person practice was affected by COVID precautions and everything was super slow. Since so much about audiology practice needs to be completed in person, with all of the required equipment, COVID put a damper on her practice. Though, it gave her more comfortability as well as patience utilizing remote and telehealth practices.

4:15: Dr. Pretasi’ mom noticed her slower speech development, but pediatricians and ENT’s did not share her concerns. Dr. Pretasi’ failed her preschool hearing screening and it took time to convince doctors that her hearing loss was something to be concerned about. It was not until her mid 20’s that she finally got her first hearing aid. Even a mild hearing loss is a big deal and any difference in hearing levels affects a person and makes hearing more challenging.

8:30: Dr. Pretasi read books at lunch during the school day. The school thought this implicated that Dr. Pretasi had antisocial tendencies; rather Dr. Pretasi read in order to cope with mental overload that occurred during the school day, and the noisy cafeteira. A child’s behavior always means something and serves as messages to take into account.

12:00: Dr. Pretasi received limited accommodations during her school years. Accommodations are fair and acceptable. Accommodations also need to be updated regularly to reflect the current status of a student as well as for proper validity purposes.  

18:00: It was not until Dr. Pretasi had bothersome tinnitus after jumping excessively on a trampoline during her university career, and she lost hearing in her right ear. This experience led her to find out what caused her hearing loss. Dr. Pretasi finds it crucial that individuals find out what one’s hearing loss consists of to know the scope of their condition.

26:00: As a parent, you can consider seeking information about your child’s hearing loss; education and information is so important. Discuss with your medical team if genetic testing and imaging studies are warranted. Your child should feel in control of their situation and accept their devices. This will allow them to have the successes you want them to have and will allow for the manifestation of the types of behaviors that you want them to possess.

 For more resources and research visit:

https://www.citrushearing.com/

https://www.facebook.com/CitrusHearingClinic/

https://www.instagram.com/citrushearingclinic/

Mentioned In this episode: Juliana who talks about APD

All About YOU! Episode 26 with Dr. Samantha McKinney

All About Unilateral Hearing Loss-Episode 48 with Jacquelyn Briggs- All About You

Listen Next/Related Episodes

Juliana Pedri who talks about APD

Transcript:

Welcome back to the All About Audiology podcast. I am your host, Dr. Lilach Saperstein. And this is the show where we talk about audiology and how it impacts your life, more than just X’s and O’s on audiograms and hearing AIDS. But what does it actually mean when you have an encounter with an audiologist, when your child has a hearing loss, when you’re going through this process. So, that is what we do here on the show.

And I am joined today by Dr. Laura Pratesi from the Citrus Hearing Clinic in Clermont, Florida. She is an audiologist and she’s going to share what it’s like to be an audiologist also with experience on the other side of the audiology booth as a patient.

Dr. Lilach Saperstein: “So, welcome Dr. Laura, how are you?”

Dr. Laura Pratesi: “Thank you. I’m so excited to be here.”

LS: “Again. Should we tell them? We had a little recording snafu about a year ago and it was like whoops. So, that audio is no longer available so, amen for second chances. So, thank you for coming again to the show.”

LP: “I’m very happy to be back.”

LS: “Awesome. So, the last time we spoke was last February and it was like, Oh, a pandemic is maybe coming or not. Or it was like maybe the second week of lockdown and everyone was still into Zoom. Haha.”

LP: “Life looks very different now than it did then, for sure.”

LS: “Yeah. So, I’m sure that is coming into play, obviously with the infection control precautions and like closures, lockdowns, et cetera. So, how has that affected your practice this year?”

LP: “Oh gosh, it was hard. Our governor of our state mandated that non-essential healthcare practices be closed down. So, we were closed by executive order from March until May of 2020. And when we did open back up, we were very slow. We were very like spacing appointments apart and really taking the time to make sure we were cleaning everything in between.

We just didn’t know a lot about COVID at the time. And thankfully, now we kind of got a handle on it. We’re faster with knowing what we’ve got to do and when, and we’re still kind of doing curbside cleaning checks or remote programming where we can. There’s just so many things in audiology that require in-person care, like getting ear wax out of ears. You can’t do that over Zoom. So, it’s been interesting for sure. But thankfully I have managed to get my two vaccines. So, we’re hopefully coming to the light at the end of the tunnel.”

LS: “That’s wonderful. I just keep thinking about the tens of thousands of dollars worth of equipment, soundproof room, computers, like all the things. And then it’s just like, well, I guess we don’t need any of this. Like, Hmm. Hahaha.”I

LP: “It was a good push to get me more comfortable with some of the remote programming features with some of the manufacturers, which it’s been out there for a little bit of time. It’s not without bugs though. And sometimes it’s dependent on the patient having stable internet connection or understanding on their end how to get logged in through the app to pull up the programming screen or how to accept the changes that come through. So, there’s definitely been some manufacturers that I think that their remote programming works a little bit better than others, but yeah, we’ve been figuring it out.”

LS: “Yeah. Again, just even in-person, in-clinic programming is always a bunch of tangled wires or like the remote, even when it’s Bluetooth. Is that connecting? Yes connecting, not connecting. Jiggle wires… Anyway, that’s what many people have experienced this year. And thank you for, you know, sticking it out and care for all the patients that rely on you.

So, let’s back up a little and you know, I feel like I already know you, but the audience needs to get to know Dr. Laura. So, tell us a little about yourself, your background, why you got into audiology, basically anything you want to share.”

LP: “So, I was born with a hearing loss and it was identified when I was five years old. This was kind of before the universal newborn hearing screening programs existed. So, I slipped through the cracks there a little bit, but my preschool was having hearing screenings prior to us all going into kindergarten. And my mom was concerned, my mom had her master’s in early childhood education and she just knew. Her gut instinct was like, something was just not quite right. And she couldn’t really get the pediatrician to take her seriously. You know, they did the “snap snap”. ‘Oh, look, she looked, she’s fine.’ And so, when they let her know, hey, we’re doing vision screenings and hearing screenings at the preschool where she got me registered and that’s what I failed. So, that was finally her hard proof that she was like, ‘No, look, we need to get this taken care of.’

And she picked up on things like, (she would say to) hold the phone, I would hold it to my left ear and I wouldn’t respond. And then I’d stick it in my right hand and then I would act like I was hearing. So, she just always kind of felt like something wasn’t quite right. My speech wasn’t quite there, but yeah.”

LS: “So, your mom was noticing that your speech was a little different than it should have been perhaps at that age?”

LP: “Yes. And she worked with me and I had one good ear, so I ended up not having to go through speech therapy. I was very lucky in that respect, I guess. But she just knew something wasn’t right. And I failed this test and I finally got the referral to an ENT and we went to one. I didn’t even realize this until after the last time that you and I talked. And then I talked with my mom and said, hey I was on this podcast, and she was like, well, you actually saw two ENTs. I was like, I did? So, yes. That’s when we saw one ENT and she was like, ‘Oh, we’re just going to put tubes in.’ And my mom was like, ‘Is there fluid?’ And she’s like, ‘No.’ And mom’s like, ‘All right, then why?’ So, she was like, okay, not going there. Then I’ll go somewhere else.”

LS: “Go mom, go! Yeah. Okay. Don’t do things you said that are not medically indicated even if the doctor says them. Okay.”

LP: “So, she took me to the second ENT, he at least orders like a CT scan. So, you know, they do a CT scan and then it just comes back with like, ‘Well, God just made her that way.’ Like that’s not a diagnosis but okay.

He was like, ‘It was just a traumatic birth and that’s what caused it.’ And that was kind of the only explanation that we got. But from the time I was five, until I was eight, they brought me back for annual monitoring, being tested every year, but I have a mild to severe loss in my left ear. And my mom’s like, does she need a hearing aid? And he’s like, nah, as long as she’s making A’s and B’s, she’s all good.”

LS: “What?”

LP: “And it’s just going to make the paper crinkling in the classroom, loud. It’s just going to distract her.”

LS: “So, let me just ask you, do you think, you know, speaking of age and millennials, et cetera, do you really think that things were that different in the level of technology at the time? Or was it the level of awareness, understanding? There’s a lot of factors there.”

LP: “I think that in the early nineties, they had the research that showed that most of the unilateral hearing loss kids did okay with speech development. So, they weren’t concerned. And I think that now we have more research that shows, okay, yeah. But they’re very likely to fail one grade, if not two. And that even a mild hearing loss is a big deal if it means that you’re not getting a hundred percent of access to sound on the audiogram. So, I mean, yeah, it was analog technology, but like digital was still a decade or so away.

There’s no reason why I could not have benefited from tech back then. They did me a disservice, but they did the best that they could with the information that they had at the time, or at least that’s what I tell myself anyway. And I definitely see that a lot of ENTs are much more proactive nowadays, thankfully.”

LS: “Yeah. And also the element of fatigue. I think that’s much more addressed now. It’s harder to listen.”

LP: “Mental load, for sure. When I got into grad school and I was reading the textbook on “these are all the things that kids with hearing loss have”. I was like, okay, are you reading my diary? Because I had all of those things.”

LS: “Yeah. I talk a lot to parents about the social implications and how we do so much for our kids to be friendly and make friends and be respectful and all the things we want for them, polite, at a level of just like interacting with other humans.”

LP: “Well, okay. For example, in middle school at one point, we had assigned seats. And my assigned seat was at the far right into the table, which meant that my bad left ear was facing everyone. And rather than struggle all lunch period to try to talk or listen or whatever, I just started bringing a book. I mean, I love to read. I needed a mental break from like all the focusing I was doing in class and stuff. So, they called a parent teacher conference with my mom and told my mom that I was too antisocial because I was reading during lunch and my mom was like, ‘Are you seriously calling me in here to tell me that my kid reads too much? Like, is that really a thing?’ She was so mad.

But now I realize that was my coping mechanism. That was how I got a little bit of a break from all of the paying attention in class that I had to do and stuff.”

LS: “When you talk about that, it makes me think that children are so incredibly resilient and they’re always doing something for a reason. I also talk about in my parenting classes and coaching and things about that children have a behavior for a purpose. They’re trying to get something or achieve something from doing that, whether it’s screaming and kicking and yelling, or whether it’s, you know, goody two-shoes-ing.”

LP: “I found that with a lot of my pediatric and even teenage patients, a lot of times rejection of the devices comes from a place of seeking control. They feel out of control for some reason, out of control with their health. Or their life or what’s going on. And rejection of hearing AIDS is a way that they can kind of feel like they get control back by making their parents feel out of control. And if they’re feeling out of control, how can we make them feel like they are in charge of something.

And so counseling, I’m constantly recommending seeing a therapist, going to counseling, because look, I’ve dealt with a lot of grief with my own hearing loss. Mine is progressive. And we found that out just about three, four years ago now. So, it was 2017.

So, back up a bit. So, I was diagnosed with the loss. It was stable from the time when I was five, until I was about eight. And so when I was eight, the ENT kind of released me from their care. They were like, it’s staying stable, we haven’t seen a change. So, just call us if your grades get bad, I guess. So, I didn’t see an audiologist again until I was ready to go to college.

And I had always made A’s and B’s in school. My mom was a teacher, but I was nervous about going to university and being in a class with 300 people and who knew what my assigned seat there would be. And I knew that in order to get accommodations, I needed to be registered with the school. And so, at the time it was called the students with disabilities department and now they call it the office of accessibility.

I went to my students with disabilities department and I was like, hey, I got a hearing loss and I want that registered. And I want accommodations for my classes. And they were like, yeah, we’re going to need a hearing test that’s been performed in the last decade.”

LS: “Yeah. Not when you were eight. That’s hilarious.

Okay. But let me just ask you this. All throughout middle school and high school, were you aware? Did you kind of have an understanding of I have a hearing loss in this ear? You know, it wouldn’t be your responsibility as a child, but you didn’t ask, is there something that we do about this? Did you ever see a hearing aid or know that existed or any of that?”

LP: “I didn’t know anyone with a hearing aid. I had never had the opportunity to listen to one when it never been recommended for me. I mean, like I said, the doctors told my parents, like, it’s just going to distract her. So, I just kind of thought. Well, I’m deaf in my left ear and there’s nothing they can do about that. So, this is just how my life is. And my mom taught me to advocate for myself and to stand up for myself and to tell the teacher, no, I’ve got to sit in the front of the class and no, I don’t want to sit next to the talker who’s going to distract me. And I didn’t have an IEP plan. I didn’t have like any kind of accommodations and it never even entered my brain that that was something I could ask for or do.

All I can think of, oh my gosh, when it was mandated that I take a foreign language and I get into high school and I’m trying to take Spanish and we had just a boom box with cassette tapes and our tests were, we would listen to the cassette tapes and then have to like write out either what they said or respond to it in a foreign language. It was so hard and I never thought to be like, um, can we do this some other way because the cassette tape gives me no visual cues. It’s incredibly hard. I watched everything with closed captioning at home, but I never thought to ask the teacher like, Hey, could you put the captions on the screen? Or in a qualm. And I would only be like, Oh, I don’t know what they said. I mean, I can’t tell you how many times I read the wrong pages for homework, you know, 65 through whatever. And it’s like, no, it was 55.”

LS: “How hard, how hard you had to work, how much effort you put in. How much overcompensating. I hear your exhaustion just from talking about it.”

LP: “That’s how I explain it to my kiddos now is I’m like, okay, you’re playing basketball and all your friends are like, just running around and dunking and dribbling and passing and whatever. And when you have hearing loss untreated, it’s kind of like you’re wearing weights on your arms and on your legs and you’re on earth. And they’re on the moon. They’re on a different field than you. And you’re having to work that much harder to compete with them on the same level. And we wouldn’t do that to you in sports. Why do you want to do that in English class?”

LS: “Yeah. And, oh my goodness, to take that metaphor even further. I hear sometimes people will say, it’s not fair. Why should they get an advantage? If you give this child like super jumper boots, then they’re going to jump higher than the other kids. Like I’ve literally heard people say that they shouldn’t get extra help. They shouldn’t get a crutch, which is my worst word ever. Like if someone breaks their leg, they need a crutch.”

LP: “I would much rather not have a disability and not have accommodations. Like, uh you’re so right. I’m right there with you all the time.”

LS: “So, then, you came to the university office, you got your hearing test and look at that, you were ready to kind of advocate for yourself at that point. Oh yeah. Gold stars. Haha.”

LP: “So, I get tested and they’re like, wow. Oh my gosh, you have a ton of hearing loss. And, you know, have you ever thought about wearing a hearing aid? And I was like, well, I mean I hadn’t. But I’ve never listened to one. And they were like, do you want one? And so, I said, well, do I need one? And they’re like, probably not, you know, you’ve been doing well all this time, you’re fine. Don’t worry about it. And I’m like, okay.”

LS: “NO!!!! When you made that, it was like panels on a comic strip and I’m like at the edge of my seat. Haha.”

LP: “So, once again, I just walked out the door with my little form saying that I need preferential seating and I maybe need a note taker. And so, they let me leave again.”

LS: “Oh man!”

LP: “So, I started off with theater and opera. I mean, I had a theater scholarship to Auburn. I was a theater major. I was taking opera classes. I had this idea that I was going to be a Broadway star and that I was going to get my degree in music therapy so that I wouldn’t have to be a waitress on the weekends. I could do like music therapy and then being in the arts, but Auburn didn’t have a music therapy program, but they had speech therapy and they had audiology. And so, I was like, well, if I do my undergrad degree in like communication disorders, maybe I won’t have to take as many remedial classes to get my master’s as a music therapist. And so, that was kind of the plan.

And so, I had to take audiology 101 and I got like a 100 in the class and I just loved it and I just connected with it. And that was my like, oh my gosh. There’s stuff we can do about hearing loss. And my professor was like, come to the dark side.”

LS: “It’s audiology 101. That’s the one. Yes.”

LP: “And my classmates ended up fitting me with my first hearing aid and it just changed my life. I burst into tears. It was such a huge difference. It was amazing, but we still didn’t know why I had the loss. I just knew I was born that way. And so, fast forward a few years down the road, I was working at this primary care doctor’s office and we were doing kind of like a team building exercise. And so, we went to this place called Sky zone, which has like trampolines, rock walls and all this indoor stuff. And I also have a heart condition, but I’ve got a pacemaker now and like it’s managed. But I never really did sports or anything as a kid because I had the heart thing and the hearing thing. I wear glasses. So, I was like, well, I’m an adult. I’ll just be careful.

So, I go and jump on the trampoline. And when I get off 30 minutes later, I had vertigo. I had screaming tinnitus in my right ear and I could tell my hearing had dropped. So, I thought I’d caught a virus. I had seen a couple of sudden hearing loss cases in clinic, like the couple of weeks proceeding. So, I was like, I’ve picked up something from a patient. I know what’s going on. So, I immediately call my primary. I got him to call in some oral steroids. I made an appointment.

I got in to see the ENT, like the next day. And these guys, I saw some otologist and they were just amazing and ordered a high resolution CT scan and doing transtympanic steroid shots in my ear. And they sit down and go over the films with me. And they were like, well you have a bilateral mondini malformation. And I was like, I don’t have Pendred Syndrome, you know? And they’re like, no, mondinis can occur on its own without being associated with Pendred Syndrome. But have you ever been tested for that? And I was like, no. I was like, I vaguely remember this back from diagnostics in grad school and either they had missed it or they had not really explained it very well to us because I had no idea.

And so, one of my best friends, Dr. Sarah Curtis, from the Sounds Of Life Hearing Center in Ohio, she’s a rock star and my best friend. I called her right after I got off the trampoline and said, something’s wrong. And she’s like, girl, you’re going to have EVA. You’re going to have an enlarged vestibular aqueduct. I just know it. Darn it if she wasn’t right. You know, so, she’s the one who figured it out and then these guys just confirmed it. But yeah, Tampa Bay Hearing Balance, I can’t say enough good things about them. They’re just fantastic otologists. And so, they finally, after 25 years and three different states and I don’t know, three, four or five different ENTs finally got my differential diagnoses. And so, I am just so passionate about not only identifying children with hearing loss, but identifying why they have the hearing loss.

Because if I hadn’t known that I had a form of EVA, I would never have gotten on the trampoline. I had normal otoacoustic emissions out of 15,000 hertz. I had beautiful, rich, high-frequency hearing. And after I got off that trampoline, I lost everything above 3000. If you look at my audiogram, my right ear, most people are going to dismiss it. They’re going to be like, you got a precipitously sloping, high-frequency loss at like six and eight. It’s mild at three and four. It does fluctuate. And they’re gonna be like, we don’t even aid that.”

LS: “And you had a CT as a kid. So, this wasn’t picked up until then?”

LP: “No. If I don’t wear my aid in that ear, I can’t hear the “S” sound. It was so distorted, so different. I mean, the fact that it was there and it was gone, I grieved. That was really hard for me. I was still very involved in community theater and church choir and all that stuff and music, everything sounded different. I suddenly couldn’t hear in restaurants or anywhere where there was any kind of competing noises and stuff.

I will never take a high-frequency loss for granted again. If someone comes in with a high-frequency loss and they’re like, I can’t hear, I’m not just going to blow it off and be like, it’s mild. We can’t do anything. No, I’m going to do speech and noise testing and I’m gonna figure out what I can do to help them because it was hard. I went through depression afterwards. I was in the middle of a play and I got through it, but it was so hard.”

LS: “Gosh, talk about a challenging acoustic environment, haha.”

LP: “I was having to relearn how to sing my songs without being able to hear the same musical cues. It was so tough. So, I went to counseling and that really helped me to talk it out, to get over my grief over the fact that my body is not working the way I want it to work. It’s permanent. You know, it really helped me to reframe it, to kind of get a positive outlook. And I don’t think that you have to have hearing loss to be a good audiologist, but I know that these experiences have made me a better one because I get it. I’ve been, like you said, on that other side of the sound booth, Just as much as I’ve been in the shoes of the professional. And I just connect with my patients in a way that school can’t teach you. I mean, it’s my truth. It’s what I live every single day.

And so, the plus side of this is that it’s given me kind of a way to test things as they come out. I’m like, oh, there’s something new. Well, let me give that a shot. So, I take things for a test drive before I start doling it out to patients.”

LS: “Okay. I just have one question there about the timeline. The first time you had the hearing aid from your friends at school, so you just got for the left ear. And then what happened was you lost the hearing in the right ear after the trampoline thing?”

LP: “Yes. Yeah. So, they fit me with my first aid in 2008, because at the time I had totally normal hearing in my right ear. And I had like mild to borderline severe. Maybe it was moderately severe in the high frequencies in my left ear only. And so I was wearing a CIC (completely-in-the-canal hearing aid) in my left ear. And then the trampoline incident was in like 2017. And after that, my left ear went to moderate to profound. And my right ear went from normal to moderately severe. It fluctuates. So, like some days my left ear is not profound and some days it is, and my word recognition scores fluctuate. So, sometimes my speech understanding is 92%. Sometimes, it’s 82%.

That’s the challenge with EVA. I’ve got the enlarged vestibular aqueduct, and then I’ve got the incomplete cochlear partitioning. So, the cochlea is supposed to be two and a half rotations. Mine’s only one. And then my vestibular aqueduct is too big. And so, it creates this like phantom conductive component. And it’s just very, very weird.

So, after the trampoline, my CIC wasn’t powerful enough for my left ear anymore. And I tried wearing a custom in the right and it just plugged me up way too much. So I ended up switching to RIC devices (Receiver-in-the-canal) with just a very open fit on the right side. And a custom mold on seashell embedded receiver or whatever on the left. And that was when I got streaming and Bluetooth for the first time. And I probably didn’t use it for the first like three months. Cause I was like, I’ve never had this, whatever. And then I started playing with it and I was like, oh my gosh, I love having an app, but I love having podcasts and the books on tape. So, now I use it every day and I love that.”

LS: “Books on tape. Audiobooks. Haha. I’m so grateful that you graced us with your story. Really, I feel that people should hear this and people should know a few lessons that I’m taking away. One, there’s no such thing as a mild hearing loss or high frequency hearing loss that’s like, eh, whatever. Any difference in hearing levels probably has some impact on the person, whether it’s fatigue or noisy environments, or it just makes hearing more challenging and for children even more so. That’s one thing.

The other thing is this feeling that things can change. This reality, that things can change. That the hearing that is now might stay the same, or it might not. And that can happen even to anyone who has never had any hearing problems at all with age, with accidents, with all sorts of things.

We actually had an episode with Jacquelyn Briggs who shared her story. She had a car accident, typical and normal hearing, and then she had a car accident. Now she uses a cochlear implant and she shared her story.

You’re also reminding me of Dr. Samantha McKinney, an audiologist who’s also a cochlear implant recipient, and an audiologist. All the different people in our community who’ve been interviewed here, I think the stories are so, so important, especially for parents who want to know how do I help? What do I do?

So, what is some advice you have for the parents listening?”

LP: “You get that differential diagnoses. Find out why you have the loss. It might not ultimately change what we do day to day. It might not ultimately change like the recommended treatment, but get the genetic tests done. Do it, get that imaging study done, do it because it just gives you more information to figure out that roadmap. I would not have jumped on the trampoline if I had known that that was going to cause my hearing to drop more. And I’m not suggesting that we make kids live in a bubble. They gotta be kids. They got to live, but it’s about, I didn’t make an informed decision. Right? It’s about knowing that this is the risk I take. And so if I do this, this could happen.

So, I think that really seeking out those answers and not just accepting, well, this is the way it is. I mean, I think that that’s super important.

And then, you know, if kids are having a hard time accepting their diagnosis, get them counseling. Let them talk to someone. There are counselors that specialize in paeds. There’s counselors that specialize in working with people who are having a hard time accepting a medical diagnosis. It was very hard for me to accept. And of course they told me like, hey, you’re one concussion away from being a cochlear implant recipient. Most kids that have EVA are going to end up with cochlear implants. It’s amazing you made it to 30 without needing a CI (cochlear implant) and I’m like, I don’t feel lucky. But sometimes when you feel out of control, then you try to control what you can, whether that’s wearing your hearing aid, whether that’s controlling what you eat, those kinds of behaviors.

So, I just think that if kids are rejecting their devices, it sometimes is just an indication that there’s something internal that they are feeling out of control with. And if you can help them give them their power back, if you can help them feel in control of their life and their situation again, then acceptance with their devices will be better. And I mean, I’m not a counselor, that’s not my area of expertise. I’m an audiologist, but that was my personal experience. And after that, it was really just this light bulb going off that was like, oh, okay. It’s about control. And so, let’s help them to feel more in control of their situation so that we can see the behaviors that we want to see and the successes that we want them to have.”

LS: “That’s incredible. I’m thinking about what you said for parents that they should consider trying to get answers about the why and the diagnosis and that for many parents, it’s really overwhelming. There’s a lot happening in those first weeks and months, that that question sometimes gets moved forward. And I think that’s appropriate. You know, I don’t think it’s the same weight as what the interventions are, but that it shouldn’t just be left totally to sit in a back drawer. Like it should come back out a couple months later and then maybe consider.”

LP: “I know with my own mother, like after I got my first hearing aid, she felt so guilty. She was like, Oh my gosh, why didn’t I get this for you years ago? I mean, she was following the advice of the experts. They didn’t give great advice, but they gave her whatever the best advice at the time was. So, I try to remind people to just love your kids. Just be there for your kids. Like they’re still the same kid today that they were yesterday. This is something that is a challenge. We’re going to work on it, but they still are who they were before. Right? Nothing’s changed, just we got a few more challenges that we got to face.

But yeah, it’s so much, it was so much going through it as an adult. And I’m like, Oh, I got a sudden sensorineural hearing loss. I’m an audiologist. I know exactly what to do with that. That was the blessing and the curse. I knew exactly what my chances of my hearing coming back were. And I knew what we could do about it. So, I’m like, if you give me that treatment, you know… But I also knew the likelihood that it’s a 33% chance. Knowledge is a good thing. Knowledge is power.”

LS: “Definitely. I think also, specifically when there’s a syndromic hearing loss and other parts of the body are affected, specifically ushers, which is also vision. So, that’s one that when there’s awareness of that, intervention is very different because we know that there’s going to be progression of both the hearing loss and the vision as the child grows.”

LP: “Right. There wasn’t any obvious syndromes. So, it was just non syndromic hearing loss. Like why is this happening? As it turns out, interestingly, my grandmother, my dad’s mom was diagnosed with otosclerosis in the 1960s and she underwent a failed stapedectomy. And of course, EVA is very, very, very commonly misdiagnosed as otosclerosis. Didn’t have high resolution CT scans in the sixties. So, EVA, it can be just a fluke birth effect or it could be genetic inheritance. So, now I’m suspecting that this is actually an inherited thing from my dad’s side of the family.”

LS: “Now I feel like we’re on a true crime podcast, investigating old cold cases from the sixties. Haha.”

LP: “I know. Forensic Audiology, right?!”

LS: “Yes. For sure. Oh my gosh. That’s fascinating. Yeah. I’m so, so, so glad to talk to you again, and I know our conversation in some parts is like very audiology, techie and all these different words, but I think still very valuable, first of all, for our students and for our colleagues who listen, but parents are in my heart. The whole mission of the podcast is to help parents know that they’re not alone with what’s going on for their family. And there’s a lot of support out there. So, reach out.

If people want to reach you, where can they find you?”

LP: “They can find me on my website, citrushearing.com. I’m also on Facebook, citrus hearing clinic, LLC. We have a citrus hearing clinic Instagram. I think my Twitter handle is citrus clinic aud on LinkedIn. So, I’m around, you can find me. My last name is pretty unique.”

LS: “Yes. And I have lemons on your mask, your custom mask here.”

LP: “We’re all citrusy here. We’re from the citrus belt here in Florida. We’re very close to the citrus tower. And so, it’s all oranges and lemons and limes, and I’m in the grapefruit room right now. So, you’ve got the pink walls. I’ve got my Auburn orange room. That’s my orange room where my booth is.”

LS: “That’s so awesome that you need to name this room, the pumpla moose room though. Let’s make it fancy. Haha. Thank you so much for coming onto the show. I’m so grateful to you for sharing your story.”

And for all the listeners, please come and say hi, your biggest takeaways or any questions on Instagram @allaboutaudiologypodcast. I will see you in the next episode. I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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