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empowEAR Audiology Podcast

  • Hosted by

  • Frequency

    Two times a month
  • First Episode Date

    August 12, 2020
  • Rating

    "5" Stars
empowEAR Audiology

Listen to empowEAR Audiology Podcasts

empowEAR Audiology

Communication is connecting. Join Dr. Carrie Spangler, a passionate audiologist with a personal hearing journey, as she interviews guests who are navigating their own professional or personal journey in the hearing loss world. If you want to be empowEARed or just want to hear some great hearing and listening advice, this podcast is for you!

Meet our Podcaster

Carrie Spangler

Audiologist, Mother, Wife, Advocate, Podcaster

About Me

Carrie Spangler, Au.D, CCC-A, is a dedicated professional in the field of educational audiology with over 20 years of experience. She also has a passionate personal journey of living successfully with hearing loss in this vibrant hearing world. Dr. Spangler has turned what many view as a “disability” into an “ability”.

In November 2019, she began her cochlear implant journey, which you can follow at Empowering and helping others with hearing loss, families, and professionals is at the core of her daily work.

Dr. Spangler has numerous publications and has presented on topics related to educational audiology, advocacy, and peer supports at the state, national, and international levels. Dr. Spangler is also an active member of professional and service organizations.

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empowEAR Audiology Podcast Reviews

Ben Thompson, AuD
Host of the Pure

I recommend this podcast! Great podcast about hearing conditions and audiology!

Father of a child with hearing loss

I'm a parent of a child with hearing loss. This is an extremely helpful podcast to learn from and be a good parent to my daughter.

Listening Fun
Facebook empowEAR Audiology Group

I had so much fun with Carrie on her EmpowEAR Audiology podcast! We talked about itinerant teachers of the deaf and how we work to support our students with hearing loss! This was my first time being a  podcast guest!! I feel like I could talk about being a TOD indefinitely so it was a really fun experience. Go check it out on Apple podcasts! 

empowEAR Audiology Podcast Transcripts

Episode 59: empowEAR Audiology - Dr. Erika Gagnon and Erin Thompson

Announcer: [00:00:00] Welcome to episode 59 of emmpowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have two guests from North Carolina with me, and I am going to take a second and read a little bit about their bios. They are an SLP and audiology duo. I have Erin Thompson, who has been working with the Children's Cochlear Implant Center at University of North Carolina since July of 2004. She earned her bachelor's from Appalachian State University and her master's in speech and hearing science from UNC Chapel Hill. She became a listening and spoken language specialist in 2009. Erin conducts listening and spoken language parent participation sessions, speech and language diagnostics for children who are deaf and hard of hearing. A passion has been mentoring students and professionals across North Carolina, the US and abroad. Erin has been a member of the Global Foundation for Children with hearing Loss and has traveled to Vietnam on three occasions and also Mongolia on one occasion to help provide mentoring and training abroad. She has spent time coaching a team of speech language pathologists in Auckland, New Zealand. Erin expanded her interest in 2019 to include the role of Family Care coordinator for the Children's Cochlear Implant Center at UNC. She helps manage, facilitate and coordinate cochlear implant consultation referrals supporting all families through the CI consult process at UNC. I also have Dr. Erika Gannon. She is earned her bachelor's and doctorates in theology from the University of North Carolina at Chapel Hill. She is a pediatric cochlear implant audiologist at the Children's Cochlear Implant Center at UNC. In addition, she is the Audiology Clinic manager and program director of the CDP Grant. Erika's research interests include pediatric cochlear implant, device use and pediatric electric acoustic stimulation. Erika enjoys teaching and mentoring students. She co-teaches the cochlear implant course to UNC's audiology graduate students. So Erin and Erika, welcome to the EmpowEAR Audiology podcast. I'm so excited to have both of you.

Erin: [00:03:03] Thank you so much for having us. This is really great.

Carrie: [00:03:07] Yeah. So I know before the podcast started, we spoke a little bit and I had heard Erin talk at, I believe, the AmErikan Cochlear Implant Alliance Conference as well as the EDHI conference. And then as I reached out to Erin, she also looped in Dr. Gannon and Erika. And we to talk about two important topics today. And I am really excited for our listeners to hear all about their work with full time use of hearing technology and its impact on language development, as well as the importance of co-treatment and strength based coaching to impact device where time and probably many other things with strength based coaching. So I am glad both of you are here and because this is kind of a audiology, professional and related services podcast, I always like to find out from my guests, how did you actually venture into the field of audiology and speech language pathology? So I don't know. Erin Do you want to start with your venturing into speech language pathology?

Erin: [00:04:23] Sure. This is kind of funny because I think it's kind of a throw out to like all the moms out there who encourage their kids or think, Hey, you'd probably be really great at X, Y or Z. And my mom in high school was like, Really I think you'd be great as a speech pathologist? And I took one of those, or she had said that and I had taken one of those personality typing, What should you be when you grow up kind of thing? And speech pathology and audiology were in the top three and I was like, Oh, absolutely not. My mom wants me to do this. No way am I doing this. So I went in. I went to Appalachian, undeclared and undecided. And my roommate at App my freshman year was in the speech pathology program. And so I got to see what she was doing and I was like, you know what? Maybe I do want to take some intro classes. And so I did and loved it and then had the challenge when I graduated from APP. On whether I wanted to go into speech or audiology. I was really torn and then found my my perfect match at UNC as a speech pathologist working with kids with hearing loss. So kind of a perfect fit. So that's a.

Carrie: [00:05:43] Great story about my mom's, right? Yeah. I was just going to say, your mom's always right. Right? Yeah. Um, Erika, how did you venture into audiology?

Erika: [00:05:55] I knew I always wanted to be in health care. I originally thought I wanted to be a nurse and figured out quickly that I don't do needles or blood. And so as I was trying to explore other options that still left me in health care, I had a friend who was in the audiology program and recommended I observe a little bit and I was volunteering at the hospital and got to observe someone like two weeks out from their cochlear implant activation. And I was I was hooked ever since.

Carrie: [00:06:26] Another great story, too. So both of you are at UNC. Do you want to do you want to share a little bit about the Children's Cochlear Implant Center? There you have a lot of great people that are part of your network. So one of you wants to take that lead.

Erika: [00:06:46] Sure. So the Children's Cochlear Implant Center at UNC. We've been seeing children with hearing loss in North Carolina for over 30 years and have performed over 2000 pediatric cochlear implants. We are a part of a multidisciplinary team and we have both pediatric cochlear implant audiologists, speech language pathologists that specialize in listening and spoken language. We also have a pediatric research group in the office as well, and we are a teaching clinic for both audiology and speech language pathology grad students, and we work with a greater interdisciplinary team at UNC, with our pediatric pediatric diagnostic team and our ear, nose and throat physicians.

Carrie: [00:07:30] Yeah, lots of opportunities to see lots of kids and be involved in a lot of research, which kind of is a great segway into the things that both of you are interested in, and that is that language development and how that impacts kids who are deaf and hard of hearing. And I think when you think about the world of pediatric deafness, a lot of the studies talk about the importance of early identification. We have newborn hearing screening, all of those important things. We talk a lot about technology and early interventions as part of language development, but one of the things that is typically not talked about that your group has spent a lot of time on, is that focus on on wear time can you one of you start sharing a little bit about your research and clinical experience in this in this area and why this is really important to consider?

Erika: [00:08:26] Sure. So wear time or getting the objective data from the speech processor regarding device usage for cochlear implants is a lot more recent than it is for hearing aids. We've only had access to this since maybe around 2014 or 2015. And so as this as a clinician, as this information became available, we felt like this was really a game changer because we're like, is this explaining why somebody isn't doing as well as we would want or not making the progress that we'd expected? And so we just we had all of this new information about patients we were seeing, you know, different where time and trends for babies versus teenagers. And it felt like we really had this key piece to something important. And so we really wanted to dive harder into that. And so we've looked at some some wear time information for this youngest group of babies, like birth to three. We have several articles on that. And also have looked a little bit about where time and the single sided deafness population.

Carrie: [00:09:32] So when, as you said, you know, for cochlear implants, this is been about 2014, 2015 that we've been able to have this data logging and hearing aids was a little before that. But again, a lot of great information. Do you as practitioners, whether from speech pathology, audiology? Do you ever ask parents like, Hey, how often is your child wearing the cochlear implant? And then do you ever see kind of a mismatch between what you're pulling up on the computer and what a parent might be reporting?

Erika: [00:10:09] Yes. We always try and ask the question, How's it going? How? How is wear time device use, especially, you know, use of like retention Aids. And unfortunately there is a trend that. Over or over reporting device usage. Parents often say they're wearing it more than the objective data shows. This is a trend in more than just cochlear implants. It's also present in hearing aid literature as well. And I think it's likely just little ones are so dynamic with eating and napping and multiple care providers. I think it's I think it's easy to overestimate the usage.

Carrie: [00:10:47] And that's kind of another way that you started thinking about looking at this was looking at this concept of hearing hours percentage. Can you share or explain what this is and why this might be a better way of looking at things rather than like kind of full time usage?

Erika: [00:11:10] Sure. So full time usage in the literature, it wasn't consistent. We were seeing, you know, 8 hours or 10 hours or clinicians were using phrases like eyes open ears on, which is a wonderful phrase and a and a great goal for parents. But sometimes, you know, that vague term isn't concrete. And then 8 or 10 hours, we were just seeing that, you know.

Erika: [00:11:34] It.

Erika: [00:11:35] Sleep wake time is so different for babies versus teenagers that.

Erika: [00:11:41] You know what is.

Erika: [00:11:41] Actually the best way to talk about wear time. So we noticed trends are like teenagers are wearing their equipment, more toddlers are wearing their equipment a little less. And we started to incorporate the sleep wake into how we define full time use or this hearing hours percentage. This was first published and Lisa Parks age at full time use predicts language outcomes better than age of surgery. In children who use cochlear implants and essentially the takes where time as a percentage of wake time based on the age of the child. So an example is a 15 year old is awake 15.5 hours a day on average. A 12 month old is awake 11 hours a day. If you take eight hours, if we were using, you know, full time use at eight hours for the 12 month old, that's 73% of their waking hours. But for a 15 year old, it's only 52% of their waking hours. So HHP better reflected the age of the patient.

Carrie: [00:12:43] Wow. Just out simple example right there with the difference of the age and the average sleep time really is telling of the you know, what we want to achieve. Is there a. I guess, percentage that as audiologists and speech language pathologist you would like to see for the hearing hours percentage.

Erika: [00:13:09] We would always love it to be 100%, but we are practical. Our research has found 80 to 100% is really the goal.

Carrie: [00:13:19] Okay, that makes sense. So it kind of factors in maybe bath time, shower times, those waking up and just kind of getting started with your day and then kind of going to bed having a couple of hours right there.

Erin: [00:13:33] Yeah. And that's where we really saw the research to show that kids had typical language scores when they hit that 80%. And that's where we were really seeing kind of the magic number kind of all align. 80% equaled some of those those stellar language scores.

Carrie: [00:13:52] Okay. And yeah, I would love to dig a little bit deeper into that as well. One of the other questions I know, Erika, you had mentioned that you there was some different research, too, with single sided deafness. And, you know, we're seeing younger kids get cochlear implants who have maybe typical hearing in one ear and a profound hearing loss in the other ear. Does the hearing hours percentage matter for those kids, too?

Erika: [00:14:25] Yes.

Erika: [00:14:26] So. The information we have for the single sided deafness. Population isn't for language scores on the whole, but we have that linked with single word scores for CNc, and so the higher the hearing hours percentage, the better the CNC outcome. There's also a positive correlation with HP and spatial release of masking scores. So a true measure of binaural hearing. So we are seeing that HP is a factor for those things in that single sided deafness population.

Carrie: [00:15:00] Okay. Do you see that? This is just a sidebar question to more acceptance of the cochlear implant if they increase their wear time to. What have you not looked into that.

Erika: [00:15:14] For.

Erika: [00:15:15] Patients or in.

Erika: [00:15:16] General, just.

Carrie: [00:15:18] Patient? Because I know sometimes they may not always kind of acclimate to the cochlear implant, but do you find that with the increased hearing hours percentage, they may acclimate or be better users of the cochlear implant?

Erika: [00:15:34] What we saw was.

Erika: [00:15:35] That as kids got into their teenage years wear time dropped. And we think that's just a matter of calling attention to something and kind of those really vulnerable teenage years, but started to see an uptick as patients got a little bit older. So I'm hoping once they get past some of those teenage years, we can expand our data and and look a little bit more into that. But honestly, a lot of it was related to age.

Carrie: [00:16:01] Okay. That makes sense too. So I know that article that both of you authored with some of your colleagues titled Age at Full Time Use predicts language outcomes better than age of surgery and children who use cochlear implants. And you kind of touched on this a little bit, but you found that for both receptive and expressive language, age of full time use was found to be a better predictor of outcomes than than the age at the surgery. So in your literature, you also found that it took an average of 17 months for children to establish that use, and only 52% reached that milestone by the age of three. So as you guys are thinking about where you're at in a big cochlear implant center and co treating and certain occasions and thinking about that whole child and the family and everybody else that's involved. Educators, early interventionist. What are some of those factors that might contribute to that statistic? Because I feel like. That is kind of a lower statistic overall.

Erin: [00:17:13] Yeah. So a couple of things there. I'm going to take over for a second and kind of jump in. Um, one of the things is that I want to touch on because I always stress this in our presentations as well whenever we're talking about this. We were finding that full time use is a better predictor of language outcomes at age three than age of surgery. We are just clear, always clarify. We are not questioning or saying that they shouldn't have surgery later, that we still absolutely you know, are proponents and promoting earlier is better. We aren't questioning that. We aren't looking we're not changing that at all. But they do have to wear it after surgery. You can have surgery at any time at six months. Not that we're doing them at six months right now, but eight months, 12 months. But if they aren't wearing it, then it does impact outcomes. Um, but back to the, you know, it takes an average of 17 months to reach full time use and only 52% did that by age three. It's almost, you know, the question of what are the factors that contribute to this.

Erin: [00:18:20] It's almost in reverse of what doesn't impact this. Everything impacts it. Um, some of the first things that we that I think folks notice or think about are any additional diagnoses. Are there other things that are even more of the higher priority for a child's health and well-being is and taking care of of those other health factors. Um sensory needs we find impact where time we of course see differences with different socioeconomic factors, parents schedules, um, kids at home versus in daycare potentially pending what education or what the what the what the the families or the child care providers have been taught about the importance of where time not that they aren't educated, but what have they been taught about where time and how important that is. Um, distance from school, distance from clinics, those kinds of things. Then the access to that education about the importance of, of wear time and then sometimes just the differences in counseling techniques and coaching techniques and, and how have their school providers, clinic providers, private providers, audiologists, um, pediatricians, ENTs explained the importance so many things have have impacted and can impact this these statistics.

Carrie: [00:19:58] Yeah, which is, I think, a great way to kind of get into what your team at UNC has really looked at to try to maybe close some of those gaps and increase the number that reached that milestone by three years of age. And I think our conversation about hearing hours percentages is really an important factor in that too. But one thing that you have shared is that you have talked about the need for strength based coaching, and that's really helping with working with families. Can you share a little bit more about this model too, of co treating with audiology and speech and how this really impacts families as a as a whole?

Erin: [00:20:46] Absolutely. So the the quick, easy definition of co treating is audiologists and speech pathologists working together in an appointment and treating a child and family at the same time. Um, it's something that has kind of been brewing at UNC since 2011 when we actually got to hear Dimitry Dornan and the Hear and Say crew from Australia talk at the AG Bell Conference in Scottsdale, Arizona back in 2011. But then we weren't able to kind of put it into practice at UNC until a few years later. We had our director at the time had to work to find some grant money to help us be able to account for our time because you couldn't bill for coach reading. Um, and so we were able to, to put that in into play in 2015. But in depth it's speech pathologists and audiologists collaborating. We talk ahead of time before an appointment to see what are the needs of that child and family. What are some things that we want to work on together? Um, make a goal. Make a plan. We collect information during the appointments about auditory skills, we use our functional listening index to track audiological audiology skills, audition skills. Um, we are providing caregiver support and that's where our strengths based coaching comes in. And then we are also communicating afterwards. We're talking to local providers, sharing, updating school professionals, educational audiologists, early interventionists, private therapists. So we're all kind of working on the same page. Um. And then that kind of leads into that strength based coaching. Yes.

Carrie: [00:22:44] So share a little bit more about that and how your team's kind of been trained and how that impacts family connections.

Erin: [00:22:53] Um, yeah. So we have all and Erika has done this as well. Think all the audiologists have had some level of training exposure to the formal, um, program, which is through the Center for School Transformation. Um, and it is an Evocative Coaching, strengths based coaching program that we have all been through. Um, and it is looking at things and very asset based, strengths based taking what is important and a strength for a professional, a parent and building off of that. Um, in all very positive ways. Um, it is learner driven. It's what is important to the family and it's based on evocative coaching and positive psychology, adult learning theory, appreciative inquiry and nonviolent communication so that you should do versus how could you what would you want to do? What would that look like moving forward with your family?

Carrie: [00:24:02] So if I would put both of you on the spot here as kind of thinking about all of the topics we've talked about in particular, like maybe you have a family who comes in and says, hey, you know, I'm wearing my child's wearing this device all the time. And as your co treating together, you realize this really isn't what's happening. Would you be able to roleplay maybe a short conversation that you may be having to discover, um, maybe the hearing hours percentage or, um, you know, what are some factors that might be happening that is reducing that  time? Could you use some of those strength based skills to kind of role play for listeners?

Erika: [00:24:53] Sure.

Erin: [00:24:56] All right. I'm going to be the clinician and Erika is going to be our parent or guardian in the clinic. And so I'll take that start of the scenario, Carrie, of, you know, looking at. Okay. All right, Erika, it's good to see you guys today. Pierce is now six months out from getting his implant. You know, you talked about coming in that you're feeling like things are going well and that you're looking at full time. You know, he's wearing it a lot and wearing it all the time. And, you know, we we looked at the data logging and and it looks like it is up from your last appointment. Last time it was around three hours a day of an average and now we're up to four hours. Um, and based on his awake time, um, of about 11 hours a day, that gives us a 36% HHP. And again, that's up from last time. Tell me something that has gone really well over since you were here last time.

Erika: [00:26:05] Yes.

Erika: [00:26:05] So since the last time we were in, we've started using a headband and I have found that that has been helpful. I find that the the easiest time is in the morning. It's a little hard to get it on when we're trying to get breakfast and everybody awake and out the door. But once once it's just he and I in the morning and we have some time to really have one on one interaction. I'm finding that we're we're more successful at that time, especially with the headband.

Erin: [00:26:34] I'm really glad to hear that the headband's been helping. I know that we talked about that last time and you were going to try it out. So I'm really I'm really glad to hear that that has been has been a benefit. Um, and that it sounds like some one on one time together in the morning has is is good as well. So what tell me about a time that's a little more challenging. What is a time of the day that's more challenging but also kind of something that feels important to you where there's a lot of language or just a special time with family? What where is a time like that during the day currently?

Erika: [00:27:12] Yeah, I.

Erika: [00:27:13] Think maybe the hardest, the hardest time of the day, but the time that we could all get the most benefit from is like the dinner prep and then dinner time. It's hard with older sister and then playing and maybe being kind of far away from me in the kitchen when I'm trying to cook and that their interaction together, it's just hard for me to keep it on them during that time. But there's lots of talking and as we're talking about dinner and you know, how is your day? I feel like that that would be a time that we could improve on. That would be important.

Erin: [00:27:45] Dinner, that dinner time after work, school time is so language rich. A lot of times that is at my house as well. So with my guess, he's probably already you're probably trying the headband after dinner right now would be my guess. Okay. Well, that's good. That's good. I'm wondering, what do you think it is about the morning time that's going so well that maybe we could add in and kind of brainstorm a way to add that into that dinner time.

Erika: [00:28:16] Yeah, he's he's playing with sister a lot, and they're in the living room and I'm in the kitchen, which are kind of connected, but, you know, a little bit farther away. I don't know. I'm wondering if while they're playing, if we could kind of try and bring them a little closer to me and have her maybe not put the devices on him, but just maybe help me monitor it more or just her interaction one on one interaction with him. Um.

Erin: [00:28:41] I like it. I like that idea. So that sounds like some one on one attention is what's been helpful and how do we create that around dinner time? And maybe, maybe Emmy, um, who knows, She might be able to put equipment on at three or so. She's four now, isn't she? How old is five? Oh, my gosh. Okay. She's five. Um.

Erika: [00:29:04] But she.

Erika: [00:29:05] Could probably.

Erika: [00:29:06] Play with him. And he loves books, so I'm sure she could sit with him and he loves to be read to. So if she could sit with him and maybe flip through some stories and books, I think he would really enjoy that time. And maybe that would help distract him.

Erin: [00:29:18] Yeah, maybe he wouldn't. Yeah. Leave him. Leave him be. I think that's a great idea. How do you feel about trying that out between now and our next? Um, next time you guys are here?

Erika: [00:29:31] I think that feels reasonable.

Erika: [00:29:32] We've got, like, a basket of books that we could kind of position in a spot that would kind of be close enough to me, but they could still have their their place to play and I definitely think that's something we could implement together.

Erin: [00:29:45] All right. Let's try it out. Let's see. Let's see if taking what we know has been helpful in one part of the one part of the day and see how that kind of can maybe carry over and and maybe Emmy won't be ten by the time you come back.

Carrie: [00:30:04] But that was fabulous role playing Erika and Erin. And and I love it. But I guess just listening and thinking about what you guys did and I want you to jump into I loved Erin, how at first you kind of laid the facts down, right? I mean, in a very good like, you know, easy to understand way. And then right after that you were able to ask or like what, you know, celebrate those small successes. So even though it wasn't where probably you would want to see it, it had increased since the last time. So, you know, celebrating those small, you know, successes all of the time is probably really a critical piece of that strength based coaching. Um, but I love how you always reflected too, on what the parent said. So you would just kind of, you know, letting Erika share and then you would just really rephrasing or reflecting and what she said. So you would. And then from there you would kind of jumped into like, can you tell me some of those challenges? You told me your successes. Tell me your challenges. And, you know, she brought up the dinner time and things like that, but then you went right into, you know, validating, you know, oh, this would be a great time to, you know, try out some more language and maybe help with that.

Carrie: [00:31:27] And then I love what you say, too, that you're like, I'm wondering. So you kind of get that wonder piece in. But for the parent and how you know, how I wonder if you, you know, can you know, and kind of help them wonder, too, in that situation. And then that really led into mom coming up with her own solution. Right? Like her own goal for what that next step was. And then Erin validating again and rephrasing, um, that was helpful, you know, for think, Erika, to kind of process that and then just asking, how do you, you know, how do you feel about this? Do you think this is something that you can do and, you know, kind of how are we going to check in next time? So does that mean feel like that was kind of what you guys were sharing?

Erin: [00:32:19] That was our hope. That was our hope. And that's always kind of our hope. And we know that families really are trying. We don't have a single family that's really literally not ever trying to keep devices on. So we know there's always something to celebrate. There's always a success in there. And pointing that out because we could focus on the hard part and the quote unquote negative, but that's not going to refresh them to keep trying harder. So finding out what is what went well for them, their success, what was great for them might not be what we would have picked out as being a success and what is motivating or an important time of day. I might have all kinds of ideas of what would be a great the most perfect language, rich time of day to focus on. But if that's not the important motivating part for the family of what is important in their home and important to them, then it might not be as motivating for them to go home and try. So we do try to to focus on what is important to the family and it is their goal for their child. This is not my goal. It's what they have they're choosing to pursue. And so I do reflect back on a lot of those things. And we do. We all do so.

Carrie: [00:33:39] And if it's their goal, I'm sure they're more likely to implement it and follow through with it. I mean, that's the hope of it as well. What happens when you have a family that you've been doing co treating with and they aren't moving as quickly as you want? Do you see that more often? Do you bring them in more often? Do you connect with them virtually more often? Like how does that work to kind of keep the, I guess, ball going in the right direction?

Erika: [00:34:11] Yes.

Erin: [00:34:14] I think and again, you know. Erika, please jump in. Um, think I think we do think it always is just very dependent family to family on why or what seems to be the hurdle or hurdles. And then if it's distance or scheduling, then we might not try to get them in more often. It might be more phone calls or touching base or connecting with their local early interventionist or school provider or something like that to or phone calls or emails or. Kind of trying to figure out what the hurdle is and then not creating more of a hurdle, but some sort of bridge. What do you think, Erika?

Erika: [00:35:00] For sure. And if there's.

Erika: [00:35:04] I don't want.

Erika: [00:35:05] To put a bigger burden by having more appointments, but I also would want to be mindful that if we're not meeting the goals that we that we'd hoped, you know, continuing to touch base and maybe having like a shorter duration between appointments if that was feasible. Um, there's also some good feedback from the cochlear implant manufacturers on the apps so you can kind of help point the parents towards that and some goal setting and letting them have some reflection of that at, at home and really just talking through, you know, what are the barriers. We tried this, okay? That didn't work. You know, let's brainstorm again. You know what? What can we continue to brainstorm through and how can we work together?

Carrie: [00:35:50] The great. So one other question kind of before we wrap up. I know that you have said that you implemented this co treat model not just a few years ago. And so have you noticed that by implementing this, you have seen, you know, greater success with just whatever you're trying to measure, whether it's hearing hours, percentage and goal setting and things like that and moving in the right direction.

Erin: [00:36:24] Do we have that data?

Carrie: [00:36:27] Or maybe you just it doesn't really need to be data, but just as clinicians in general, like do you just feel like from that family perspective and working with families over time since implementing this co treat? Do you feel like you're making a lot more progress than if you were just kind of in your own silos of like speech pathology over here and audiology over here?

Erin: [00:36:50] 100%.

Erika: [00:36:51] Absolutely. I feel like the family feels more supported as the audiologist there. They want to hear so they can talk. So I'm the hearing piece, but having the talking piece there is so important. So, yes, I definitely I feel like there's been a lot of success with that.

Erin: [00:37:09] We get a lot of positive feedback from families. We get a lot of positive feedback from the professionals that we talk to that they're local professionals. We are tracking their auditory skills. So we have a lot of children that we see. There's a red dot on the graph every time we see them and we can see things going in the right direction is going in the right direction, even if it's very slow. We do get a lot of. Positives from it.

Carrie: [00:37:41] Yeah, I do. I've always believed that, that the relationship between the speech pathologist and audiologist is so critical and is like what you just said, such a valued input for the families to, to have everybody kind of working together to. But as we kind of wrap up with today's episode, is there anything that you would like to add that I didn't ask you?

Erika: [00:38:11] I think it just.

Erika: [00:38:12] Really takes a village in that communication with the entire care team and the family is is vital, especially with these young ones. There's a lot of dialog with the early interventionists. Other resources, family caregivers. I think just the open communication with everyone is just really important.

Erin: [00:38:33] I definitely agree. And there's no one size fits all approach to where time or retention aids. There are so many different companies out there on Etsy and and different things to help and just, you know, figuring it out on what works best for each individual child and family. And if one doesn't work, that's okay. Try another one. And connecting families, we connect a lot of families to talk to each other because we can talk all day about things that have worked or we've tried or have tried worked for other people, but we haven't, you know, haven't experienced it ourselves. So.

Erika: [00:39:21] No.

Erika: [00:39:21] I've also reframed some of my counseling, at least from the beginning, as someone is starting the cochlear implant process to at least say the wear time on the front end will be a challenge just so it's not a surprise. And so if we easily move past it, then great. But sometimes I think parents are a little surprised by the need for the retention aids and the things like that. So I'm just kind of trying to set up the. The brainstorming.

Erika: [00:39:49] Later.

Carrie: [00:39:51] Yeah, which is probably helpful when you go through the the strength based coaching with the families. You've already kind of planted that seed before they've even started that journey, so they expect you to be asking about it later on.

Erika: [00:40:05] Yeah, and.

Erin: [00:40:06] We talk about it ahead of time, so it's not a surprise when it's a challenge later like.

Carrie: [00:40:14] If our listeners want to get a hold of you or do you guys have any resources for for just the topic that we talked about today, like hearing hours, percentage or anything that you guys use in your toolbox that's out there for others to use?

Erin: [00:40:35] You can definitely reach us via our email addresses. I think we've shared. You have those, please. You know, we are fine with sharing those. We definitely have social media for our clinic, um, and Instagram, Facebook and Instagram for the clinic. Um, Erika has designed some infographics, don't know how where those technically live, but.

Erika: [00:41:02] I'm happy to share infographics with anybody. You can reach out to me via email. Um, is it helpful to go ahead and state my email now?

Erika: [00:41:10] Is that something you want.

Carrie: [00:41:11] To go ahead and do that? And then I can definitely link it in the show notes as well.

Erika: [00:41:16] Sure. My email isErika, Erika dot Gannon g. A g n o n. At Unk Health And I'm happy to share any infographics and resources we have to help with this dialog.

Erin: [00:41:32] And my email address is is the same as Erika's. Except Erin. Erin Dot Thompson. Thompson.

Carrie: [00:41:45] All right.Well, Erika and Erin, I want to thank you both for being wonderful guests and participating in role play and and the EmpowEAR Audiology podcast. That was in wonderful conversation. And I'm sure all of our listeners will be very excited to hear all of the information and hopefully they will reach out if they would like more. So thanks again for being a guest.

Erika: [00:42:09] Thank you so much. Thank you.

Erin: [00:42:10] So much.

Announcer: [00:42:11] This has been a production of the 3C Digital Media Network.

Episode 58: empowEAR Audiology - Dr. Jace Wolfe

Announcer: [00:00:00] Welcome to episode 58 of empowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:14] Welcome to the EmporEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hey, welcome to the EmporEAR Audiology podcast. I am really excited today to have a friend and a colleague with me, Dr. Jace Wolfe, and I'm just going to read a little bio about him before he comes on the air and shares a little bit about himself as well. But Dr. Jace Wolfe is the senior vice president of innovation at the Oberkotter Foundation and Hearing First. He is an adjunct professor at Salus University. He previously served as the editor for the American Speech Language and Hearing Association Division 9 Journal and is currently a co editor for plural publishing Core clinical concept series and cochlear implants. He is the author of the textbook entitled Cochlear Implants Audiologic Management and Consideration for Implantable Hearing Devices. And he is the co editor with Carol Flexer, Jane Madell and Erin Schafer. And for the textbook pediatric Audiologist, Audiology, Diagnosis, Technology and Management. The third edition and Pediatric Audiology Casebook. The second edition. He is also a coauthor of the textbook entitled Programing Cochlear Implants The Third Edition. His areas of interest are pediatric amplification and cochlear implantation, personal remote microphone technology and signal processing for children. So Jace, welcome to the empowEAR Audiology podcast. I'm so excited to have you.

Jace: [00:02:17] Thanks, Carrie, so much. I'm excited to be here. As I've told you before, I think the world of you both as an audiologist, even more so as a wonderful person and as an advocate who's passionate about advancing the outcomes of children with hearing loss. So it is an honor to be able to talk with you today and to be a guest on your podcast.

Carrie: [00:02:40] Well, thank you for being here too. I want to say thank you. And I met oh, goodness. It's been probably. I want to say it was like 12 or 13 years ago over in Berlin.

Jace: [00:02:53] Yeah, that's true. We're getting old for sure. I can't remember. I was. Yeah, it could have been 12 or 13 or 20. I'm not for sure, but it's been a long while now.

Carrie: [00:03:01] It has been. So what? Seasoned professionals now, Right.

Jace: [00:03:06] See, I like that a lot. That works a lot better than old.

Carrie: [00:03:09] Yes, exactly. Well, since you are a seasoned professional, I always like to ask audiologist or other professionals who come on the podcast, how did you venture into the field of audiology? Do you have a story behind that?

Jace: [00:03:25] Great question. I knew for certain, even when I was a small child, that I wanted to do something in the health care field. And gosh, in elementary school I can't remember the exact grade, but I started wearing contact lenses and I loved my optometrist. And so for a while, while I thought I'd be an optometrist, but when I started my freshman year at the University of Oklahoma, I took a survey course and every week a different health care professional would come in and talk about their discipline. And one week, a gentleman named Dr. Stephen Peyton came to the class and talked about audiology, and he was just on fire about audiology. He's very, very charismatic person. He's very well-spoken. But you could tell he loved what he did and he talked about what he did and really kind of entertaining and exciting ways. And it got me interested in audiology. And so I went and shadowed him a couple of times. And watching him work, you could see his love and passion for his work, even more so in the clinic than when he was lecturing about it. And his patients loved him. And you could tell the difference that he was making in such a positive way in his patients lives. And so I really have to say that a lot of my interest in audiology, I really attribute that to meeting Dr.

Jace: [00:04:48] Peyton and just observing what he did. And I will say that I probably stayed in the audiology program because he was an instructor at the University of Oklahoma where I attended and got my master's degree in audiology and then eventually my PhD degree. He introduced me to my wife and yeah, I stayed and got a PhD degree because of him as well. So I owe him a ton and you know, I have no regrets. I'm so grateful that I didn't skip class that day that he came and talked about audiology because I love my job. It's been a perfect fit for me. I know I'm biased, but I think audiologists are so important just in really promoting the quality of life of the patients that we serve. And that's true if you're a pediatric audiologist. But as we've seen even most recently with the presentation of the results of the Achieve study with older adults, our work makes such a big difference in the quality of life and the cognitive and neurological health of adult patients with hearing loss as well. So very grateful to be an audiologist, very grateful for Doctor Peyton as well.

Carrie: [00:06:02] Well, that's just a great testament for anybody listening out there. If you're asked to go into a college or a university class and talk about what you do, if you're passionate about it, you may get someone like you who is interested and follows that path.

Jace: [00:06:22] That's true. I hadn't even thought about it from that perspective. But yeah, we are definitely walking advertisements for the field of audiology, so it's probably important to always put our best foot forward.

Carrie: [00:06:34] Right, exactly. So I know recently you've kind of made a little shift in your role as an audiologist and you do have a new role with the Oberkotter Foundation and Hearing First, do you want to share a little bit about what you do and maybe a little bit about hearing first as well?

Jace: [00:06:54] Sure, sure. So you're exactly right. I did, about four months ago, make a big professional career change For the 20 years prior to that, I had worked at Hearts for Hearing, which is a great place. And I still think the world of hearts for hearing. It's a speech and hearing clinic that serves both children and adults in Oklahoma. I love the people I worked with at Hearts for Hearing. It was a great experience. Still, obviously no regrets there, but I had worked there for 20 years and I'd kind of reached a point in time in my life where I thought that a change might suit me well in this position. This opportunity came along with the Oberkotter Foundation. It just really suits my skill set and my passion for where I think I can make my biggest difference for children with hearing loss in particular, which is always been my biggest passion. I've worked with both children and adults, but my my focus for most of my career is really kind of resided more in the pediatric space. So in March of this year, 2023, I accepted a position as the senior Vice President of innovation at the Oberkoter Foundation and the Oberkotter Foundation. It's a private family foundation. It was started by Paul and Louise Oberkotter back in 1985. So almost 40 years ago they had a daughter named Mildred or Mildie Carter, who was born with hearing loss and Mildie through a lot of work, learned to listen and talk. And she became a very successful, independent, very charming adult. But back then, it was really challenging to learn to listen and talk because we didn't have things like cochlear implants and universal newborn hearing screening and and even the type of hearing aid technology that we have today.

Jace: [00:08:49] And so this foundation was really developed to try to really optimize the outcomes of children with hearing loss to help them reach their full potential, to learn to listen and talk and just their overall outcomes that they would achieve in life. The organization has evolved over time as technology has evolved. Starting in 2013, they formed a subsidiary called Hearing First and Hearing First is a fully online digital community that has aimed to provide information for the families of children with hearing loss and then also the professionals who serve those families and those children as well. Up until about a year and a half ago, the primary focus of hearing first was to provide education and information both for families and listening and spoken language specialists or little providers. But more recently, there's also been an increased focus to provide information and education for pediatric audiologists as well. And that's one of two areas where I'm going to play a big role is in leading our efforts to provide best in practice educational experiences for pediatric audiologists. Also to I think they'll be really well received by the community still and educators and early interventionists, maybe in some cases physicians as well. And then eventually I will also lead an effort to support science and innovation, development of technologies and services that will hopefully address some of the challenges that we faced for many years and maybe move the needle or improve outcomes and quality of life for children with hearing loss. More on that later as that develops. But at the current point in time, my focus is really on the learning experiences for pediatric audiologists.

Carrie: [00:10:49] Yeah, and I know hearing first has really been a great resource for a lot of families out there for listening and spoken language professionals and those who work with children who are deaf and hard of hearing. I know I've taken quite a few courses and I've had the opportunity to present as a professional to for the hearing first community and love the learning community and the resources that they have and materials their podcast, their on demand learning. There's so many resources to explore within the hearing first community. But one of the things that I know you mentioned as your new role as innovation would be to really develop the audiology content or offerings that that hearing first is going to have. So can you maybe share a little bit about some of these upcoming learning courses that you have in the works, or is it a secret?

Jace: [00:11:51] Yeah, no, it's not a secret. We've got our calendar for the entire 2024 year finalized now and I am so excited about it. Carrie I think that that you'll be excited about it too, and I hope the pediatric audiology community is excited about it as well. And as we were developing that calendar, we really wanted to come up with subject topic areas that were really relevant and timely. We wanted to identify the areas where audiologists felt like they could benefit the most from from education, from new information. We wanted to identify areas that maybe weren't covered comprehensively in many of the pediatric audiology education programs, and that's no slight to the audiology programs. When you think about audiology and the way technology has expanded goodness, the scope of practice has become so large. And to be able to cover everything that an audiologist might do even in three years of courses and then a fourth year with the externship is really almost impossible to do it at a really in depth level. And so we're trying to identify some of those areas where either because there's not enough time to allocate to that in the programs or maybe technologies just changed so much in the last few years that there's a need to maybe bring everybody up to speed in the latest that's happening in a certain kind of sub topic area within pediatric audiology.

Carrie: [00:13:30] Okay. So I kind of think of that as maybe just in time learning when you're out there in the field and you have, um, whether it's your patients or you're getting your feet wet, you realize what some of those gaps you might have that you didn't get within your audiology program.

Jace: [00:13:51] Yeah, I hope that we meet that need for sure. We want to start out with the bang. And as I talked to a handful of people in the pediatric audiology space over and over again, I heard that genetics was a really big area of interest for for pediatric audiologists for a number of different reasons. I mean, one, maybe because it wasn't a topic that was covered in depth or in detail in their program, but also we're seeing such an increase in the number of children who are getting genetic testing. And as we will talk about in the course, there are new resources available to allow children to get genetic testing where in the past it may have been cost prohibitive to do so because sometimes the testing can be so expensive. But I can even speak from personal experience that when I receive the reports from those companies that do the genetics testing, sometimes those reports make my eyes kind of glaze over in my head spin because they're pretty complex, you know, in the way they describe the test findings. So our goal for this genetics course are really courses. It's really three fold. And one, we want audiologists to be able to review those reports and understand every aspect of the report so that they have a clear understanding of how the genetic testing would would really impact the long term outcome of that child. And we want to do that because we want the audiologist to know how they can best serve that child.

Jace: [00:15:30] Number two, And that would be just understanding how the diagnosis or the etiology might affect the child's outcomes. What type of management strategies might be best help the child to overcome any kind of challenges working with other professionals, interdisciplinary teams to address some other problems that the child might experience relative to any kind of genetic cause of the hearing loss. And then also to be able to inform families in a very family centered and also evidence based way as well, because oftentimes families have a ton of questions about those reports. And we want audiologists to be able to speak intelligently about what those reports mean for just the overall quality of life and outcomes of that child. And then finally, in third, we want audiologists to be equipped to be able to talk with other professionals at a high level about genetics and understand when genetic testing might be helpful and what the results mean as far as the management of that child is concerned. So super excited. In January, we're going to have a course that just talks about the basic fundamental science behind genetics. So it'll be chromosomes and DNA and RNA and transcription and the Molecular inheritance patterns, all the different things that you would need to know to really understand and have a good kind of foundational knowledge of genetics.

Jace: [00:17:04] And so that'll be good for a number of different people. And we're going to offer that course not just to audiologists, but everybody in the pediatric hearing health care community, including physicians and nurses and physicians assistants. Then in February, we'll follow that up with a course that talks about genetics as it relates to childhood hearing loss. So we'll talk about all the different types of recessive and dominant causes of childhood hearing loss. X-linked We'll talk about the different Nomenclatures like DF and A and DF and B and Gjb2 and what all that means. We'll talk about genetic counseling. We'll talk about how to counsel families. We'll talk about genetic therapies that might be on the horizon and what the timeline looks like for that as well. And that'll all cover the first couple of months of the year. And we were able to talk Hela Azaiez, who is one of the foremost researchers in genetics as it relates to hearing loss. She's at the University of Iowa, which has a phenomenal, just wonderful program, genetics program that focuses on childhood hearing loss. And I've heard her present before on the topic. She's a wonderful presenter. She can take really complex information and share it in a way that's easy to understand. So I think the. The pediatric hearing, health care community and beyond will really love these first two courses that we're going to offer.

Carrie: [00:18:36] And how are those courses set up? I know in the past when I've taken courses, they've all been free. You have to be there to attend to get your, you know, professional hours. But how are these how are these set up?

Jace: [00:18:50] Great question. So they're all free of charge. There's there's no cost to take the courses and every course will provide CE credits. And the way we're going to set them up for 2024. And this we have ongoing discussions right now about the length of courses and the type of courses that we would offer. We we used to have 90 minute lectures and for busy clinicians, that's a big time commitment. So we're scaling it down. And each week, like the genetics course in January, will be four weeks long to cover all the basic science behind genetics. And there will be four 60 minute recorded lectures that the audiologist can watch on their own time. And then each week there will be a live session on Monday, and that happens at 8:00 Eastern Time. And that live session will give participants an opportunity to interact with the instructor. And that'll also be 60 minutes long as well. One huge difference for what we're going to do in 2024 compared to the past is that we will make the live sessions available after the fact. So busy clinicians with busy lives they might have a child who has basketball practice on Monday night at eight Eastern, or they might want to go see a show or something like that or watch The Bachelorette on Monday night, you know? And so if they have something, some kind of conflict on Monday night, they'll be able to watch it later and they'll have 30 days after the end of each course. So for the January course, you'll have all the way to the end of February to watch all of those lectures, both the recorded and the live lectures, and you'll be able to get full credit for that.

Carrie: [00:20:41] Oh, that's nice because I know like, yeah, that's been a challenge sometime for me is to in order to get all of the credit, I wasn't able to attend every single, you know, lecture. And then if you miss one, you don't get the credit. I mean, you still can get the information, but you don't get the credit.

Jace: [00:20:58] Yeah, you know, we want to we our primary goal is to to improve the outcomes of children with hearing loss. That's that's the primary mission. And so I think the best way to do that is to make sure that the information is as accessible as it possibly can be and that it's convenient as it possibly can be to access. And so we need to make sure that when clinicians are going to invest time in this, that they can get the full benefit and reward. And part of that is getting CE credits. You know, you only have a finite amount of time and as a busy clinician, you know, at the end of the day, you might just simply be tired or you might not feel well. And, you know, even if you don't have a conflict, it might be difficult to do it at a certain night, but you might find yourself waiting outside of your daughter's volleyball practice with 30 minutes to spare in the parking lot. And you could watch the lecture at that time, you know. So and we're also experimenting going forward, probably not in 2024, but with micro learning, because right now, especially younger generations, they learn in, you know, 140 or 280 character chunks, you know, on Twitter or they watch videos for 15 or 30s on TikTok. And so how can we package the most important information in a really concise way, too, so that, you know, it comes across on your social media feed or an email and you get the highlights that could really make a difference in how you serve children with hearing loss. So more to come on that front, too.

Carrie: [00:22:32] Yeah. So that were all of your innovation comes in into play, right?

Jace: [00:22:38] That's going to be a part of it for sure. Um, and you know a lot of pie in the sky stuff. I mean, with artificial intelligence. Now I've played around with, you know, presentations where you can create a PowerPoint presentation and then you can have a digital avatar that is indistinguishable from a real human, and that digital avatar can give your presentation. And so the sky is the limit on what we can do in the future. I think we might be able to create programs that would be digital avatars of parents and maybe professionals could practice providing, you know, news about, you know, a new diagnosis of a child with hearing loss and new identification. And they could get real time feedback from a digital avatar, and that would give them an opportunity to experience that before they have to do that, live with real people. And again, that's kind of pie in the sky. There's still a lot of development that would be necessary to make something like that happen. But those are the types of things that I think we can do in the future and types of things that we're considering for professional education may be a program that would generate simulated ABR waveforms, and you could mark those and analyze those on the fly because there's obviously so much knowledge and experience required to do that well. So I think it's going to be a lot of fun as we leverage some of this explosion that we're seeing in AI and technology and how we can apply that to the education of audiologists, both in professional settings and at the level as well.

Carrie: [00:24:10] And there's so much to explore at such a fast pace, too.

Jace: [00:24:14] Yeah. Oh, yeah, yeah.

Jace: [00:24:17] Without a doubt. But I'm so excited. I don't know. You know, there's 12 months obviously in the year and so we have a different topic for every month. But yeah, I would love.

Carrie: [00:24:26] To hear about you kind of talked about the first couple of months, but you, you got us through the winter here. Jace What what's coming up in the spring?

Jace: [00:24:39] Well, you tell me to stop when you want me to stop because I could stay here all day and talk about what we're going to do with the learning experiences in 2024. But in March we're going to have a learning experience on autism and the optimal audiology management of children who either have autism or there is a suspicion that the child has autism because so many kids, you know, if they're not speaking and the language doesn't appear to be developing, one of the first steps is to get a hearing test, to rule out hearing loss before they move on and have neurodevelopmental testing to diagnose autism. And so we were fortunate enough to get Jim Bodfish, who is a psychologist and a neuro developmental specialist at Vanderbilt. He's invested his entire career in studying autism, and he's going to give a lecture just kind of on the fundamentals or basics of autism. And then that's going to be followed up by two weeks where Ann Marie Tharp will talk about assessment, audiology, assessment issues with children who have autism. And then in the third week, management of children with autism, special considerations for fitting hearing aids, cochlear implants, that sort of thing. So I think that will be well received because I know as somebody who recently was in the clinic, that that can be really challenging to make sure you provide the best care for for children sometimes who, you know, are kind of averse to that care being provided.

Carrie: [00:26:09] Right? Yeah, We see a lot of that in the schools Having that dual diagnosis or trying to get a dual diagnosis I guess would be another challenge too. So we've got genetics and autism. What else do you have? Do you have a summer summer thing?

Jace: [00:26:26] Yeah, well, we can keep rolling in April. We're going to have a best of in the 2023 pediatric audiology literature. So we're going to have an all star cast. Jay Hall, Marlene Bogado, Renee Gifford and Ryan McCreary. And they're going to review some of the best articles that were published in 2023 and diagnostics and hearing aids and cochlear implants and then in miscellaneous issues. And so that should be a lot of fun because again, oftentimes when you're super busy in the clinic, it's hard to keep up with the literature. And there are so many journals out there, Even if that's all you ever did, it would be impossible to find all the best that's out there. So I think that this will provide something for everyone who would participate in that course, because I'm almost certain that at least some of these articles will be articles with which the participants aren't familiar. After that, in May, one of the things I'm most excited about a gentleman named Anthony Alleman, who's a medical doctor, he started out as a cochlear implant surgeon. He had completed a Neurotology residency and fellowship, but then went back and got or completed a fellowship in radiology as well. And he's a diagnostic radiologist now, and he's going to talk about imaging of the auditory system. And the goal will be the audiologists will be able to look at an MRI scan or a CT scan and identify all the relevant structures of the ear and be able to determine if it looks atypical or if it's typical and what that would mean for the management of the child as well.

Jace: [00:28:01] So I think that will be really exciting because that's something that we typically don't get a lot of in the program and it can kind of be intimidating if those kind of images are are put up in a staffing with other professionals and it just looks like a big black and gray bob on the screen. And it's kind of challenging to know what you're looking at. So I'm hopeful that that will be helpful as well. Um, and then in June, we're going to have a series of classes on optimizing the outcomes of children with exceptional needs. And we're going to have Angela Bonino from Vanderbilt University, who does great work in this area. Children with neurocognitive disorders, visual disorders, motor disorders. And she's going to talk about assessment and management for two weeks. And then Schuman He and Holly Teagle are going to finish up that course talking about cochlear nerve deficiency and how that's diagnosed and ideal management for that. So that'll take us through the first half of the year.

Carrie: [00:29:05] Wow, that's a great lineup. And are all of these going to be I think you mentioned Monday nights for the genetics or are they kind of different depending on the speakers?

Jace: [00:29:16] That's a great question. Most likely we'll have Monday night that will feature new courses for audiologists and then many months we will also have a Thursday night course that will be a repeat of a course that's been offered in the past. So like a repeat on middle ear measurements and otoacoustic emission measurements and a repeat on programing cochlear implants as well. So it's going to be a really full calendar. And I don't want to again, I don't want to bore your listeners, but we're going to have the rest of the way. Balance Assessment Management. Violette Lavender at Cincinnati Children's. I just want to say this because I'm excited about the topics and I don't want any of our great instructors to be left out, but I think that will be a really interesting course. Dr Lavender is an expert in that area and also sees patients clinically at Cincinnati Children's. In August, we're going to have a three week course on auditory Neuropathy spectrum disorder, led byThierry Morlet, who has worked his entire career with Chuck Berlin. And Linda Hood just published a two series article in ear and hearing looking at outcomes of 260 children served between 2005 and 2020. He's a subject matter expert in that area, and I think it'll be great. I know a lot of clinicians have a lot of questions about how to best serve children with auditory neuropathy. September, we're going to have a summary of the latest outcomes of some of the biggest studies in audiology. The LOCHI study out of Australia will cover that the outcomes of children with hearing loss study. Elizabeth Walker at the University of Iowa will cover that research out of Melbourne, where they look at outcomes of children who have been implanted before nine months of age with Shani Dettman and then the child development after cochlear implantation study, which was started by John Niparko many years ago.

Jace: [00:31:21] But they have outcomes now for children who are well into their teenage years. And Andrea Warner-Czyz is going to talk about that. Three more months October single sided deafness with Hillary Snapp at the University of Miami, who's an expert in this area, particularly with bone conduction devices and cross devices excuse me. And then Lisa Park, who is an expert in this area as well, particularly with cochlear implants, November, we're going to have beyond the audiogram Ben Hornsby and Hillary Davis of Vanderbilt. We'll talk about fatigue related to childhood hearing loss. Andrea Warner Czyz will be back to talk about social emotional issues, including self-esteem and quality of life and bullying and how to help children in those areas. And then we will have Irina Castellanos, who worked with David Pisoni for years. She's now at Ohio State University. She's a psychologist and a neuro developmental specialist. And she's going to talk about executive function, theory of mind, working memory and sensory integration as well. And then the very last month, we will have Kelly Baroque and an anesthesiologist from Cincinnati Children's, and they're going to talk about sedated ADR assessment and best practices in that area. So if you can't tell, I'm excited about this, I can't wait for it to start. I'm going to take all the courses myself, and I hope it's really beneficial for professionals and even more so, I hope that this information is beneficial ultimately for the children we serve.

Carrie: [00:32:59] Wow. Yeah, that's an incredible lineup and I know many of those presenters. So you definitely have top people who are presenting their research and their clinical expertise coming up. So I'm excited too. I'm going to have to like carve out my Monday night starting in 2024.

Jace: [00:33:23] Well, thanks so much. You know, in the future, we're going to have to get you on as well to talk about everything everyone needs to know about educational audiology and the latest and greatest in that topic area. So I will definitely be getting back. Can touch with you.

Carrie: [00:33:37] Yeah, well, I would be happy to talk about my passion and purpose as well. So thank you for. For that too. But if people are interested in this lineup, can you just share a little bit more about how they can find the lineup and how they can, you know, sign up for these classes?

Jace: [00:34:00] That's yeah, that's a great question. You can go to hearing and there's a professional learning community there and you register as a professional in the professional learning community. And then if you wish, you'll start getting updates or regular correspondence via email from hearing first. And we we are targeting the fall as the point in time where we'll start really promoting these learning experiences and providing more information. So they'll definitely be more to come in the not so distant future, but between now and 2024, we also have some great courses that professionals can take. Now there's one ongoing right now where Nancy Young from the University of Chicago, where they have maybe the largest pediatric cochlear implant program in the country, is talking about medical management of children with hearing loss. And it's been great as well. So you can go there now and get involved with the courses that we have scheduled between now and the end of the year and then there'll be more to come. Once you're registered, you'll get that information in the future and we're going to have a really big marketing effort to to reach out to the pediatric hearing health care community starting in the fall to make people aware of these offerings and the opportunity to get the latest and greatest information at no cost with credits as well.

Carrie: [00:35:26] That is great because I know getting CEUs sometimes and the cost can be a challenge and to be able to really have a focus on that pediatric audiology population is going to be amazing and a great addition to the hearing First Community, Are you guys still going to be targeting like the deaf educators and speech language pathologists and parents as well?

Jace: [00:35:52] Yes, Yes. Without a doubt, there will still be a very concerted effort to have lots of products and cutting edge information for providers. And then, of course, families. We want to be a lifeline for families who are newly diagnosed or children with hearing loss. And then as they progress through the journey up until adult independence. And so that will definitely still be a core focus in the middle of the wheelhouse for for hearing first. And we will continue programs that have been exceptionally successful, like the Starts Here program, which seeks to educate expectant mothers about the importance of hearing and the hearing screening prior to the child. Even being born as well. And we've been able to touch almost a countless number of expectant mothers with that program over the past two years. You can learn more about the Starts Here program and how you might be able to get involved with that at the hearing website as well.

Carrie: [00:36:53] Oh, good. Well, I'm glad we were able to touch base today. And I know you are new to Oberkotter to the hearing first. Um. And being able to get your skills and use them in a different way. I'm sure it's going to continue to grow over there. Hearing first, and I'd be interested to hear what your next round or your next innovation with science and technology and how that continues to evolve too, in your role.

Jace: [00:37:24] Well, let's do this again next year and I'll be able to tell you more.

Carrie: [00:37:28] Okay, We can definitely do that. So. Well, Jace, I just want to say thank you again for being a guest on the EmpowEAR Audiology podcast. And people can get on the hearing first website and get a hold of you if they have any other questions, and then find out about all of the resources and offerings that will be happening starting in August and leading up through 2024.

Jace: [00:37:53] Well, you're very welcome. And Carrie, thank you so much again for the privilege of being on your podcast and for your friendship. It's been an honor, and I've really enjoyed it.

Carrie: [00:38:02] All right. Well, thank you, listeners, for listening to the EmpowEAR Audiology podcast. If you enjoy this, please take a moment and give a five star review that helps other listeners to find the podcast and share it with others. Thank you and have a great day.

Announcer: [00:38:19] This has been a production of the 3C Digital Media Network.

Episode 57: empowEAR Audiology - Dr. Sarah Sydlowski

Announcer: [00:00:00] Welcome to episode 57 of empowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have the honor to have a special guest today on the Ear Audiology podcast, and I have Dr. Sarah Sydlowski and she is the audiologist audiology director of the Hearing Implant Program, the director of Audiology, Innovation and Strategic Partnerships and Associate Chief Improvement Officer at the Cleveland Clinic in Cleveland, Ohio, where her clinical and research interests focus on implantable hearing devices. Optimization of practice efficiency while maintaining strong outcomes and development of innovative clinical delivery models. She earned. She has earned the Cleveland Clinic Distinguished Educator Certificate and is the adjunct faculty at the University of Akron, where she teaches the Graduate Implantable Technologies Course. Dr. Sydlowski completed her clinical doctorate at the University of Louisville, her externship at Mayo Clinic in Arizona, and her PhD at Gallaudet University. Most recently, she completed her executive MBA at the Weatherhead School of Management at Case Western Reserve University, where she was the recipient of the MBA Leadership Award.

Carrie: [00:01:57] Dr. Sydlowski has been a very active and professional organization serving on the American Academy of Audiology Board of Directors as a member at large and President during the 2021 2022 term, as well as on multiple program committees and subcommittees for the National Conference. As a trustee of the AAA Foundation and as Chair of the Governance Audit and Student Academy of Audiology Advisory Committees. She is the past president of the Ohio Academy of Audiology and has served on a task force for the American Cochlear Implant Alliance related to expanding cochlear implant candidacy and was co-chair of the American Cochlear Implant Alliance Program Committee in 2021. Most recently, her interests have focused on developing interdisciplinary relationships to advance the successful identification and management of individuals with hearing loss through. As co-chair of the newly formed Hearing Health Collaborative, which is a think tank of audiologist, otologist and patient advocates charged with developing a blueprint for changing the landscape of hearing health care. She is also principal investigator of a study focused on integration of tablet based hearing screeners in primary care and geriatric medicine practices. So again, I am really excited to have Dr. Sarah Sydlowski i with me today. Thank you for being a guest on the EmpowEAR Audiology podcast.

Sarah: [00:03:29] Oh my gosh. I was so excited to have the invitation. Thanks for having.

Carrie: [00:03:32] Me. Well, I am really excited to have a conversation with you about a couple of topics that I feel passionately about, and I know you do as well. But whenever I have an audiologist on my podcast, I really like to find out how did you even get into the field of audiology? Because I feel everybody has a different story that led them there.

Sarah: [00:03:55] That's very true. You know, mine was kind of a long and meandering path. I always knew that I wanted to work in health care. I knew that I wanted to help people. I was always really good at writing and I loved communication. I thought I wanted to be a journalism major. For a while. I thought that I would be a writer, um, but I wanted to somehow combine these two loves that I have. And for some reason initially I thought that meant that I should be an orthodontist. I come from a family of dentists, and so I originally thought that's what I would do. So I was pre-dental for most of college. And then I have a grandfather who got a cochlear implant when I was in graduate school, and I don't know that his hearing loss directly impacted me, but I think it must have had some role at least. And somehow I stumbled onto audiology and I came to the conclusion that audiology was a fairly small field and that there was more opportunity to have a bigger impact. And so I decided to be an audiologist. And actually when I first started in graduate school, I almost went back to dental school because in my first semester I thought, I don't know if this is for me. It was initially, you know, audiograms and hearing aids and I just wasn't sure. And my program director at the time told me that there Is so much more to audiology, you need to stick it out and find the thing that inspires you and challenges you. And there are so many things that you can do. You don't have to do any one thing. And that was really true. And for me, cochlear implants was the love that I found in audiology.

Carrie: [00:05:31] Love that story. How just something in your family kind of clicked and got you on another path. And obviously you've made a huge impact in the field of audiology and you continue to do so with your passion and what you love to do. So thank you for all that you've done. I am excited to really dig into a couple of topics today with you one being cochlear implants, which we both share a passion for me personally and you professionally. And then to dig in a little bit more with the Hearing Health Collaborative and the impact that is making nationally and then internationally as well. But just to kind of get started with cochlear implants, and I know most of our audience today probably knows what a cochlear implant is, but can you just kind of give a quick overview of what a cochlear implant is just in case somebody wants to know or have a little background about that?

Sarah: [00:06:34] Sure. So my simple explanation of a cochlear implant is that for hearing aids, we're assuming that the ear is still working the way that it typically does. And if we can just make sounds louder, then they're more accessible and can be passed up to the brain the way that we would expect. But sometimes it's not enough just to make sounds louder. We also need to make them a bit clearer. And so a cochlear implant essentially takes the place of the sensory cells in the inner ear that aren't working the way that they used to. And we directly stimulate the hearing nerve and send the signal up to the brain.

Carrie: [00:07:10] Good. Thank you for having that quick overview. And with cochlear implants, they've been around for quite a few years, really kind of starting out with that FDA approval back in the 1980s and then kind of early 90s for kids. But there's been quite a few changes over the years and technology technique techniques, candidacies and outcomes. So can you kind of maybe give an overview of how this candidacy has changed over the years?

Sarah: [00:07:42] Sure. Absolutely. I think it's so exciting actually, how much cochlear implants have changed in my career. It's one of the reasons I love it is that year to year you have to keep learning and doing things differently because it's constantly evolving. Initially, cochlear implants were a last resort. They were saved for when a hearing aid could not help at all and somebody was really struggling and just couldn't function with the hearing aid even. And today we know that the sooner that we offer a cochlear implant, the sooner someone has access to that technology, the better. So today we don't look at the overall hearing as much as we look at each ear individually to try to make sure that each year is functioning the best it possibly can. We also tend to use words more than sentences, So we realize that when you have context, sure, you can maybe figure out what's being said, but you're using so much cognitive energy that you might be really tired and exhausted by the end of the day. And so it's more realistic to look at individual words where you're not having to draw on those cognitive resources and can hear the individual sounds. And then the last thing I'd say is that we don't have concerns like we used to have about when someone has residual hearing. So even if they have natural hearing, that's maybe within the normal range or a mild hearing loss, particularly in the low pitches, will still offer an implant because we know not only can we preserve it and not necessarily lose it, but it can add to the quality and the overall outcomes that the patient has, especially in situations like groups and background noise or enjoying music.

Carrie: [00:09:28] Yeah. So I feel like, um, you mentioned earlier that early cochlear implants were a last resort and with a lot of the changes in the candidacy and having more residual hearing and kind of measuring different ears, that has changed a lot. But I feel like maybe hearing health care professionals in general who are not working directly with the Cochlear Implant Center, they may not know that there been changes in that. So can you maybe update a little bit about some of those next steps that if somebody was working in a clinic that they may be looking for?

Sarah: [00:10:13] So I'll give you a really simple and easy way to know if you should send someone for a cochlear implant evaluation. And this is what we use at the Cleveland Clinic, and that is if someone has an ear, any one ear, that's understanding less than 60% of words, we'd like to see them. And we did a project probably seven years ago now because we had seen that the candidacy criteria were changing. We knew we were offering implants to many more people, but we weren't seeing more people coming into our practice and we couldn't figure out why. And so we went through a program that we have here at the clinic for our continuous improvement department. We use some structured problem solving to ask why that was happening. And one of the things that we learned is that people felt like they were sending someone for a cochlear implant, not a cochlear implant evaluation. And those are very different. So I would want referring providers, audiologists in the community who don't work with cochlear implants to know that when you tell someone they should consider a cochlear implant, it doesn't mean that they absolutely have to get one.

Sarah: [00:11:25] I know that can feel nerve wracking to make that recommendation often, but I look at it more like a hearing aid benefit appointment, so we're able to measure how much is this individual understanding with their hearing aids? What's the best hearing aids can do for them? And if the answer is it's not as much as what a cochlear implant can do, then we should talk about a cochlear implant. But oftentimes what we learn in that appointment is that there's programing adjustments that could happen for their hearing aid, or maybe they need to be using assistive listening devices. It's really an opportunity just to better understand what are they experiencing right now, what's the best that they can do? And maybe cochlear implants are part of that conversation. So, you know, I just hope that people aren't nervous to send someone. And I think it's important to know you're not recommending the surgery you're recommending. Let's look at all your options and making sure you're doing the best you can.

Carrie: [00:12:22] Yeah. And I'm sure from a patient perspective, I know it's a scary thing to do. And but then in hindsight, like getting that extra information and being able to process it may help you later make a decision for that is better for your hearing health care as well.

Sarah: [00:12:42] Yes, absolutely. Absolutely.

Carrie: [00:12:45] Are there other barriers that you have seen as a cochlear implant audiologist and being at the Cleveland Clinic of whether it's from the audiologist, not referring or patients not coming as far as a cochlear implant? Just even the evaluation goes?

Sarah: [00:13:05] That's a great question. I don't think that we really know all of the reasons yet. I do think that referring providers, whether that's an audiologist or an ENT or even a primary care provider, it's really important that they feel confident and comfortable making that recommendation because I think patients look to you, you know, to provide the best recommendation possible and they trust what you offer. I think it's typical and normal for people to want to dig to the bottom of their toolkit to offer whatever they can. And so we see that happen a lot, that we'll have patients come in who have tried 5 or 6 different sets of hearing aids. And the thing about that that's really interesting is often from patients I hear the comment, why didn't my audiologist tell me about this sooner? And they're frustrated and they've even lost some trust. And so I think that being open and candid about having these conversations early actually helps to build your patients’ confidence in working with you, knowing that you have their best interests at heart. So definitely that's an important piece of it. I also think there are a lot of misconceptions about the surgery itself. I've heard people say it's brain surgery. I've heard people believe you have to stay in the hospital, you know, for a number of days.

Sarah: [00:14:28] This is an outpatient procedure. It's not actually anywhere close to the brain as far as Otology surgeries go. It's fairly straightforward. We see very low complications. There are always risks to surgery, of course, but I think that there are some misconceptions about how invasive the procedure really is or what the recovery is like. Certainly, there's some risk for dizziness, sometimes an increase in tinnitus, sometimes a metallic taste. There's a few other things that patients should be aware of, but for the most part, we see these as pretty low occurrences. So that probably factors in as well. And then I think what you mentioned, which is just a fear of the unknown. Cochlear implants are hard to talk about because you can't let someone try one and see, Oh, is it better? And so it's really a leap of faith and trusting in your providers. When we say we're pretty confident that you're going to do better with this device than you can with the hearing aid, but there's no going back. And so I think that it that can be a hard a hard decision to make and people often have to feel like. There at the end of their rope before they're ready to let go.

Carrie: [00:15:45] Yeah, no, I can relate well to that. I think one of my the best things that helped me was being able to talk to other cochlear implant recipients as well who have gone through the process and they were able to share some of those similar concerns. But then you see that they're they most of the time people say, I wish I would have done this sooner rather than waited. So that kind of been the the answer that I get most of the time.

Sarah: [00:16:13] That's I'm so glad you said that, because that is the most common thing I hear is why didn't I do this sooner? And actually, one of my favorite parts of my job is that when I see patients for cochlear implant evaluation, they're usually thinking there's nothing else I can do. I've tried everything and I feel like I have this little secret, like I have this great answer and I know what your experience is going to be like in six months from now and your life is going to open up. And so it's just such an honor really to be able to provide that for the patients I work with.

Carrie: [00:16:50] Yeah, just getting them to that that appointment so they can have their eyes opened or at least learn more about what their options are and be able to make a decision at some point. What is the, I guess, percentage of individuals who may qualify for a cochlear implant but have not taken that step?

Sarah: [00:17:13] A great question. So I know that the number is low, but I was shocked to read a recent article that was published, I think just in the last year by Ashley Nasiri, who was up at Mayo at the time, and some of her colleagues, and they looked at very current numbers for cochlear implant candidates as well as who could benefit but hadn't proceeded. And they estimated that for those who meet, the more expanded criteria, only 2% of people who could benefit from an implant have one, which means 98% of people who could be doing so much better with their hearing and enjoying life and being able to do things they care about don't have one. So that's why I'm so committed to trying to work hard to spread the message that many, many more people could be candidates and they just need to get to a cochlear implant program.

Carrie: [00:18:10] Wow. To think that 98% have not taken or even explored it yet is quite alarming. I guess.

Sarah: [00:18:20] It's unbelievable. Like how many, you know, medical interventions do we have where 98% of people who could benefit from it don't have it, don't actually know the answer to that question, But I can't imagine it's many. And it just seems amazing that we have such wonderful technology. And then to not use it is such a shame.

Carrie: [00:18:40] Yeah. So we definitely have a lot of work to do on both sides. I know you had just was back in, I think, 2022 September, October of 2022. You had an article that you authored in Audiology today titled Cochlear Implantation The Most Misunderstood and under Recommended Treatment Option in Audiology. And I think we kind of covered that. But do you want to maybe summarize that answer? Because it it definitely the most misunderstood and underutilized.

Sarah: [00:19:18] But I hope that title would catch people's attention. Yeah. So basically what I wrote about are some of the things that we talked about today too, which is the idea that we're looking at individual ears and residual hearing is okay. And there are many people that you probably wouldn't look at and think of them as a cochlear implant candidate. Most of us have in our mind the idea that someone has to have severe to profound hearing in both ears, and then they could be a cochlear implant candidate. But most of my practice anymore, that's actually a pretty small percentage of who we see. I would say the majority of our patients now have asymmetric hearing loss where one ear may very well be outside of the typical range for a cochlear implant. Many of our candidates now have completely normal hearing and at least one ear. And the other thing that I wrote about in the article is that oftentimes, very often, actually, people think of who is a candidate for a cochlear implant based on if they meet FDA labeling or if their insurance would cover it. And the reality is that clinically, we are implanting many individuals who exceed FDA labeling. And there's a difference between candidacy and coverage, and we use that term interchangeably.

Sarah: [00:20:44] And I think it's very dangerous and harmful, actually. So we've made a really big effort at our program to first say, is this individual a candidate? So would they would they benefit from a cochlear implant? Could their hearing be improved by having a cochlear implant, yes or no? And then we'll answer the question, will someone pay for it? Which is a totally separate issue. As you know, cochlear implants are covered by most insurances, but oftentimes their policies are still fairly outdated and they tend to list those older criteria. But oftentimes we're able to go through appeals and we're able to convince them that based on this particular circumstance, the patient would benefit. And so I think being able to deal with those two issues separately is really important because we've seen many patients in the past and from other programs who are told you're not a candidate for a cochlear implant, but really they are a candidate. They could benefit. Either their insurance won't pay for it or the clinician who saw them didn't, or they knew that they didn't meet FDA labeling or Medicare criteria, which is a totally different issue.

Carrie: [00:21:55] Yeah, no, that's good to kind of clarify that difference between candidacy and coverage. And I think you're right, a lot of people get confused. They just say, I'm not a candidate. But in reality, they are. They just may not have been approved or they didn't go through the right channels then.

Sarah: [00:22:14] Right And I think it's important for patients to know the difference because we need we need them to be advocating to if they're telling people, oh, wasn't a candidate, that's very different than I am a candidate. And can you believe my insurance won't cover it? This is ridiculous. And I think that we need, you know, people to have that frustration and be able to share their stories so that we can continue to move the needle.

Carrie: [00:22:40] Yeah. Which I think is a great segue . In that article that you wrote, you presented a case scenario and it is kind of the I don't want to say untraditional, but like the a case scenario that maybe people would not have referred for. So I thought just for our listeners, it might be beneficial if I read your case scenario and then you kind of walk through for our listeners what those next steps might be so that we can kind of dispel some of these myths of not referring along the way for a candidate that they might not have thought would have been worthy of referring, I guess. So your scenario talks about a 61 year old female that has adult onset progressive sensorineural hearing loss attributed to an auto immune disease. Her audiogram, which you can't see right now. But if you just want to picture it as a listener, suggest a moderately severe sensorineural hearing loss from 750 to 8000Hz with poor word recognition ability. She wears hearing aids in both ears, but reports that she is increasingly frustrated and has difficulty in a variety of situations. She's anxious and groups and crowds and is withdrawing from public speaking engagements that have always been a key aspect of her work because she feels uncertain fielding questions from the crowd. So if someone came in to a practice with this kind of setup, what would be the next steps for digging deeper?

Sarah: [00:24:22] Yeah, a great question. So I think an important question that we don't ask and answer often enough in a typical audiology appointment is how much are your hearing aids helping you? So we program the hearing aids. Some audiologist is programmed to first fit and may not do objective testing. There's lots of conversation about how important real ear measures are. And I of course 100% agree with that. But it's important to remember that real ear measures are really just showing us the output of the hearing aid and what the hearing aid should be able to provide as far as audibility. But I believe we need to take it one step further on a regular basis and do aided speech recognition testing with all of our hearing aid recipients. We tend to think of that as part of a cochlear implant evaluation, and it is it's an important part. But don't think that we should be waiting until we think someone's an implant candidate to do that testing. So for this patient in particular, she didn't have, I don't think any thresholds that were worse than 65 DB No.

Carrie: [00:25:31] 75 at 8000 for the right ear. But that was it.

Sarah: [00:25:35] That was it. Yeah. So most people, you know, especially with those good low frequencies up in the mild range at 250 and 500, most people would look at that and say it's a hearing aid patient. And she was. But she was also still struggling with those hearing aids. My recommendation would be that any audiologist, every audiologist, even if you don't work with cochlear implants, should put that patient in the booth and measure their ability to understand spoken words with those hearing aids on programmed and verified. And if the word understanding is worse than 50%. Consider them for a potential cochlear implant.

Carrie: [00:26:21] Yeah. And it looks like for this case, when they put her in the booth, the right ear best aided was 40% for words and the left ear was 36%. But can you expand a little bit more on maybe sentences too? You've touched on it earlier, but she had 72% in one ear, 74% in the other ear in quiet. And that obviously went down in noise. But people might look at the sentences and be like, wow, she's getting she's pretty good.

Carrie: [00:26:52] Yes, that's exactly right.

Sarah: [00:26:53] Most people would look at sentences and, you know, in a in a day to day conversation, especially if she's in quiet and especially if she has lip reading, it might appear that she's doing reasonably well. But what we don't measure well, we don't necessarily even ask about well, is how hard it is for her to do that. And so the listening effort that she's putting in and the cognitive resources she's having to dedicate to getting that 72% is probably pretty significant, especially when you look at the fact that if you do take context away and now you're just hearing individual words, her scores drop almost in half. And so that alone can tell you that, you know, she's relying very heavily on contextual information. So if we look at just that word understanding on its own and it's, you know, 30, 40%, that means that there are many sounds of speech that she's not hearing, that a hearing aid simply can't provide, that a cochlear implant could. And indeed, that's what we saw when we moved her forward to a cochlear implant.

Carrie: [00:28:00] Right.

Carrie: [00:28:01] And then you went even further with her and talked about more of those subjective experiences too. So can you share just a little bit more maybe for audiologists and clinics of different tools that they might want to incorporate to get that information?

Sarah: [00:28:23] Definitely. I think that's probably also a fairly overlooked aspect. Most of us ask informally, you know, how do you feel like you're doing in different situations, But having a more standardized questionnaire that patients can complete, I think gives really great information about what they're experiencing and what they're perceiving in a way that's measurable and something that you can compare, you know, pre and post when you've made some changes. So for our patient, we use well, really for all of our cochlear implant evaluations, we use the hearing handicap inventory for adults or the elderly, depending on the age of the individual, a tinnitus handicap inventory, dizziness, handicap inventory. And then we also usually use the SSQ, the speech Spatial Qualities questionnaire. And the combination of those measures give us a good sense of how the individual is perceiving they're doing in their day to day life. There are a lot of other measures, of course, that can be very helpful. I think it's important to consider, number one, what questions are you trying to answer? And number two, when are you using those questionnaires? Is it before and after an intervention? Is it something else? But for us, you know, we were able to see that her hearing handicap was 100, which is as high as it can go. And so that was very helpful in understanding really the impact the hearing loss was having, even though I would guess that you'd look at that audiogram that you described so well and you'd probably wouldn't think that was a 100 HHI score. So it was important to have that additional information about her experience.

Carrie: [00:30:05] And with all of this information, she. You talked a lot about earlier, those looking at your specific, you know, the ears differently and then that residual hearing and taking all of that together, what was the next step in almost, I guess I'll say, the counseling process of getting her to, um, maybe think about a cochlear implant.

Sarah: [00:30:35] A great question. Oftentimes, if someone makes it to my office, they already are struggling enough that they want to know about any options that are available to them. So remember, there wasn't a whole lot of counseling that really needed to happen. I actually can distinctly remember, she said. I don't care if you want to put reindeer antlers on my head, I will do it because I want to hear better. Wow. So that in and of itself was really impactful. Sometimes I think people come in and they're skeptical, in part because they've already been told in the past, you know, let's get a new hearing aid that will help you. And oftentimes it doesn't help as much as they want it to be able to help. And it's not because their audiologist hasn't done the best job that they could. It's not because it's not good technology. It's just because their hearing has exceeded the capability of acoustic technology. And so it's important that they're able to move forward. So sometimes the counseling is overcoming their past experiences and helping them understand why this time is going to be different. And that goes back to what I mentioned earlier. You know, sometimes when audiologists have tried three or 4 or 5 sets of hearing aids, it actually makes it even harder for patients to move forward to the next step because they've been burned so many times. And so they are more skeptical and they are less trusting. And so I think the patients who get to me sooner who get to have the conversation earlier, it's also easier.

Carrie: [00:32:17] And just to have a kind of wrap up of the case scenario, what was so she went through with the cochlear implant and what happened after that.

Sarah: [00:32:29] So she did great. That's that's a happy ending. But the biggest improvement we saw was, in her word, understanding ability, which is exactly what we expected, that in those situations where context goes away. Her word scores doubled. She was implanted in an ear that had 36% word recognition, and it went up to 84%. And then the great thing is that she still wore a hearing aid on the other side. And so she had the benefit of acoustic hearing there and put together her word understanding was 96%. Take it. A whole lot better than that. Noise, of course, was still difficult, which it is for all of us, especially when you have a hearing loss with the cochlear implant by itself, she was able to understand 46% in noise. But with the addition of the cochlear implant, which she had both cochlear implant and hearing aid together, her understanding was 82%, which before the implant she was only getting 26% in noise. So that was a huge, huge improvement.

Carrie: [00:33:35] And did she do any kind of like aural rehab or any training in order to kind of have that bimodal benefit?

Carrie: [00:33:43] Yes.

Sarah: [00:33:43] I'm so glad you asked that question, because I think when we talk about hearing devices, everybody thinks the magic is in the device. And partly it is, but partly it's in that work that the patient puts in. So we push auditory training really heavily here for everybody. But I have also seen this is just anecdotally the patients who have more residual hearing, especially like a single sided deaf patient who has a normal ear and then a cochlear implant ear. They have to be absolutely committed to doing this practice on a regular basis. So I tell everybody at least an hour a day, at least five days a week for at least the first six months after their cochlear implant and probably periodically forever. The more they do, the better outcomes we see for sure.

Carrie: [00:34:30] Yeah, I just wanted people to be aware that, like, the cochlear implant is not a quick fix and there's definitely some work that needs to be done after that too. But I also think it was telling with the questionnaire to post implant like even one month post implant when you re-administered the hearing handicap inventory.

Carrie: [00:34:53] Yes. Yeah.

Sarah: [00:34:54] Her her HHI score dropped from 100 to 22 in 1 month. I think that's also a misconception is that you're absolutely right. Like there's going to be months of work that goes into getting the most out of the implant that you can, but also within a couple of weeks, most people are doing better than where they started. And we measure everybody's hearing and understanding ability one month after we turn the implant on. And, you know, I won't say universally, but the vast majority of people are already demonstrating benefit just one month later. So many people think it'll be months and months before they have any improvement, which is definitely not the case.

Carrie: [00:35:36] Wow. Well, that was just a great way to highlight, I think, all of the different changes that have happened in candidacy and how hearing health care professionals really need to be thinking differently about their patients so that they can get the best benefit that they need, which I wanted to also talk about the other project that you are involved in too, called the Hearing Health Collaborative, because it really looks at hearing health care in a in a different way. Would you be able to share a little bit about your involvement with that? Because I know you were a part of the brainchild of developing it and really starting and getting this group going.

Sarah: [00:36:22] Sure. No thank you for asking. I'm really proud of this group and very honored to be involved and had the privilege of participating from the early days, which is great. So I co-chair the Hearing Health Collaborative with Dr. Matt Carlson, who's a neurologist at Mayo Clinic. And gosh, I've even lost count of how many members we have now because it's been growing so much. But I would estimate we probably have 40 or 50 people from across the country neurotologists, audiologists, representatives from our professional associations, some epidemiologists, primary care providers, geriatricians. It's a wonderful group of of people. And the purpose of the collaborative is really to get everybody at one table, you know, to try to cut through some of the bureaucracy. That can happen when we're looking at individual organizations or individual programs. We all want the same thing. And we know that there's power in all working together. So that's our intention. We've really become a think tank of people who are trying to move forward. How we manage hearing and hearing care in America. What we did that I'm particularly proud of is that we used structured problem solving approaches from continuous improvement. It's called A3 thinking to really understand the root cause of the problem that we're dealing with. And you mentioned earlier, you know, part of my time I spend now in our continuous improvement program, which is something that came to my career just recently, really in the last few years, but it has been so empowering to see the impact that using this methodology can have and the change that it can drive and the really strong results that we can have.

Sarah: [00:38:15] And so I was excited that the group embraced this methodology. I think one of the challenges that we've had with hearing care is we all make a lot of assumptions about why people aren't using hearing devices or why people aren't seeking our services. But to my knowledge, I don't know that anybody's really sat down and and gone through this structured problem solving to get to the root cause. So that's what we're doing with the collaborative. And through that process we identified three key countermeasures that we are focused on. The first is to identify a vital sign for hearing. We believe that there needs to be a number that people can look to, just like we do for blood pressure, knowing 120 over 80 abnormal or vision 2020, we don't have something comparable for hearing. Secondly, we know that we need to have a staging system for hearing loss. Right now, you know, we really focus on that scale of mild, moderate, moderately severe, etc. Number one, that doesn't have much meaning for patients or for referring providers. And number two, it only encompasses audibility, which is one component of hearing, but it doesn't factor in word recognition ability.

Sarah: [00:39:30] Be like we just talked about, which is so important, or quality of life or the perception the patient has. And so we would like to develop a staging system that really provides more understanding and direction to patients and to to referring providers. And then thirdly, we need to have procedural changes so that there's a better standard of care for getting patients into the system. That probably has a couple of components. One being at a primary care level or even a self screening level. You know, how is screening happening? When is it happening? Why is it happening? Should it be happening more? And then when you've been screened, what's the recommendation to get to an audiologist? And then secondly, once you're in the system, how do you get moved along to the right treatment? So like we've been talking about already today, once you have hearing aids, how do you make it to cochlear implants as an example? Or maybe you've tried over-the-counter hearing aids, but you need to move to prescription hearing aids. So we're looking at each of those steps in the path and really taking a long, thoughtful look. And most importantly, like I said, bringing together as many stakeholders as we can so that we can make the change together.

Carrie: [00:40:47] What a great. Start up a collaborative as well. And if individuals want to participate or get involved, are they able to?

Carrie: [00:40:59]

Sarah: [00:41:00]   Yes, absolutely. So we have a website you can Google Hearing Health collaborative, adult hearing. I think we'll bring it up. And there's information there about the work that we've done, how you can get involved. We're trying to update it as we continue to make progress because that work is is happening. We're also working on a few publications, so hopefully you'll be able to see those in the literature soon.

Carrie: [00:41:24] Great.

Carrie: [00:41:24] And I know part of that work is also kind of been with the awareness of cochlear implants as well. And there's an actual work group kind of looking at that as some of the challenges that we even talked about today and how to dispel some of those challenges.

Carrie: [00:41:44] 

Sarah: [00:41:45]   Yes. Yes.. So I think there's so many people who are contributing to this work, and we need as many people as possible who can because there's so much to be done. So there's everything I just described that's more, you know, at a primary care level, going to the public, you know, really specifically about hearing health. And then there's individuals who are more focused on that cochlear implant awareness, which we also need. And yes, I mean, just a lot a lot of work that's happening for sure.

Carrie: [00:42:18] Yeah, it's just wonderful that you have so many different professionals and individuals involved. And like you said, everybody has a seat at the table and everybody's perspective is so important in getting that mission out there to help the general public.

Sarah: [00:42:34] Yes, 100%. We we haven't done it individually yet, but together I think we can.

Carrie: [00:42:40] Great.

Carrie: [00:42:41] Well, Sarah, is there anything that I didn't ask you today that you think I should have asked you that our listeners should know about whether it's the cochlear implant process for adults particularly, or the Hearing Health Collaborative?

Sarah: [00:42:56] No. Gosh, I think you've done a great job of really covering it so well. And I've enjoyed tremendously being able to talk about something that I care about so much. I really appreciate you also being committed to getting the word out that, you know, just don't wait for cochlear implants. It's not a last resort. And please, you know, for your listeners, I hope everyone will contribute to that message of the fact that hearing is vital to health. It's about so much more than just a device. And I think that that's where, you know, the Hearing Health Collaborative and others are working hard to spread that message. But again, we need everybody individually in every venue that you have to share that message.

Carrie: [00:43:39] Yeah, that's a great way to kind of wrap everything together. Dr. Sydlowsk if people listeners want to get Ahold of you, is there a good way for them to reach out to you?

Sarah: [00:43:51] Sure, absolutely. They can email me. My email is s like Sam y d as in David l o w s like Sam at Charlie. Charlie

Carrie: [00:44:05] Okay. And I can put that link in the show notes as well, as well as a link to the Hearing Health collaborative too. So if people want to link on that, they would have a direct access to that. But I just want to thank you for taking the time. I know you from the bio. You have a lot of different projects and interest and passion going on, but I wanted to thank you for being an honored guest today on the empowEAR Audiology podcast and highlighting all of your passion and the work that you're doing for hearing health care and policy change and for cochlear implants in general. So thank you for all of that. And I just want to thank all of the listeners for being a part of the empowEAR Audiology Podcast. Be sure to subscribe wherever you listen to ensure that you don't miss an episode, and I would be grateful if you could leave a five star review which helps others who may not have subscribed yet know about the empowEAR Audiology Podcast and if you need transcripts, they are available on the 3C Digital Media Network webpage. So thanks again for being a guest.

Sarah: [00:45:15] My pleasure. Thanks so much again for the invitation.

Announcer: [00:45:18] Has been a production of the 3C Digital Media Network.

Episode 56: empowEAR Audiology - Dr. Lindsey Tubaugh

Announcer: [00:00:00] Welcome to episode 56 of empowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right. I am really excited today to have a special guest with me. I have Dr. Lindsey Tubaugh, and I know I said that wrong. Tubaugh Thank you. Um, with me today and she has been a practicing audiologist for over 20 years, working with both adults and children in a wide variety of clinical settings. She has co-founded the Little Heroes Pediatric Hearing clinic, where she specializes in tinnitus and sound sensitivity disorders, including loudness, hyperacusis, Annoyance Hyperacusis, Misophonia and Fear Hyperacusis and Phonophobia, which we're going to talk about today. Her passion is helping patients understand that tinnitus and sound sensitivities, while sometimes debilitating, can be managed with careful testing and treatment, patients can live their best lives. She has become a Rapid Transformational therapist to utilize hypnosis and further assist patients with tinnitus and sound sensitivity struggles. She created the Sound Immunity Program, which is an online coaching program for those struggling with sound sensitivities. So, Lindsey, thank you. Welcome to the EmpowEAR Podcast. Oh, thank.

Lindsey: [00:02:03] You so much for having me. I'm so excited. I love talking about this. So I'm I can't wait to just dig in. Yes.

Carrie: [00:02:12] And that's exactly what we're going to do today. But before we dig into that, every guest that I have that is an audiologist because it's such a unique and fun field. I always like to find out, how did you actually get into audiology? Do you have a story behind it?

Lindsey: [00:02:28] You know, I feel like my story is very similar to others stories in that when I was in college, I was going into special education and then I learned more about speech language pathology. So I switched majors to to speech language pathology. And as an undergrad, you take both audiology courses and speech pathology courses. And I just loved the audiology courses so much more. And so it just kind of morphed. And then, you know, at the end I was like, I'm not I think I would have been happy being a speech pathologist, but audiologist audiology just called to me. So that's how I ended up here and I couldn't be happier.

Carrie: [00:03:08] Well, good. I know. I feel like a lot of people have that pathway too. Yeah. Yes. So can you just share a little bit, too, about your professional background? Because I know that you have co-founded Little Heroes, but where did you I know you started out somewhere before that.

Lindsey: [00:03:27] Yeah. So I started out, um, way back when you used to get a master's degree. That's what. That's me, too. And right after I got my master's degree, I got hired on in Iowa to for private practice. And so I ran two offices in southeast Iowa, mostly for adults. We did get an occasional child here and there, but it really was mostly an adult private practice dispensing clinic. And I worked there in addition to some ENT work PRN, um, here and there for about ten years. I did that before moving to Utah. And I.

Lindsey: [00:04:14] Really want.

Lindsey: [00:04:15] To see. Um, so I really wanted to find something that fit my personality a little bit better. So a job came open in Salt Lake City and for a newborn hearing screening program. That needed to be needed, an audiologist, you know, to do the testing and the follow up. And so I interviewed for that position and I got that position and I worked doing that for about three years before transferring to the children's hospital here in Salt Lake City. And I learned so much about pediatric audiology and met just the most amazing people when I worked at the at the pediatric hospital here. And I really loved it. I, I moved into a management position over at the audiology Department at the hospital. And I was doing that for about three and a half years and then realized that I really missed patients. I really missed missed patient care and a lot of the things that I was interested in, like misophonia, um, weren't things that were very conducive to, to, to a hospital type setting. And so one of my best friends and I decided to open our own practice and specialize in these things we do any the only thing we don't do in our pediatric hearing clinic in Layton, Utah, is vestibular testing. But otherwise we are a full clinic offering all services to pediatrics. We also see adults for our specialties, which is auditory processing disorders for Dr. JJ Wicker and then sound sensitivities and tinnitus for myself.

Carrie: [00:05:59] Oh wow, that sounds like an amazing way to kind of get out of a management position, but then to be able to use like the skills and your passion in a different way.

Lindsey: [00:06:10] Exactly. Exactly. Yeah.

Carrie: [00:06:13] Well, um, someday I would love to come visit you guys. Oh, we'd love to have you. Yes, But anyways, I know I was so excited. Dr. Gail Whitelaw had recommended that I reach out to you because she's like, she has so much knowledge in the area of Misophonia. And so just in the setting that I'm in and educational audiology, I've run into a couple of students that definitely have been diagnosed or kind of have the characteristics of Misophonia. So I thought this would be a great topic for the EmpowerEAR Audiology podcast because we don't talk about it enough and I would love to have our listeners have a little bit more information. So I think the first question is I think people pronounce this in different ways, right? So the correct way.

Lindsey: [00:07:09] Misophonia Okay. So this has this is actually a bigger question than I think most people even realize because some people say misophonia, some people say Misophonia. And to me, I don't really care how they pronounce it or I don't. I say, Misophonia, Um, but you'll hear it both ways and it's kind of like with tinnitus. You'll hear some people say tinnitus and some people say tinnitus. And people have different opinions on that. But the bigger question to me is, is should we be referring to this as misophonia or should we be referring to this as annoyance hyperacusis And this is something that I never even knew was a thing until I went to, um, Iowa to their tinnitus. Every year they have a tinnitus conference and that's where they talk about how some people just get really, really upset by the term misophonia and they really feel that it should be called annoyance hyperacusis So regardless of if you hear the term Misophonia or Misophonia or annoyance Hyperacusis it's the same thing. And I think that that's important. So I try to be careful with my wording with other professionals. Um, most people know it as misophonia That is the most common thing you get on TikTok. They're talking about Misophonia. You get, you know, social media. It's Misophonia you talk to psychologists, it's misophonia. But there are some audiologists for good reason, who believe that because it is a type of hyperacusis and because that is how you code it, that it is, it should fall under that hyperacusis umbrella and should be termed annoyance hyperacusis. So you'll see me utilizing those terms kind of interchangeably. And I'm always sure to tell patients and families that that they might see it in two different ways.

Carrie: [00:09:05] Okay, well, they learned something already, right? As far as terminology. And I thought that was going to be a simple question, but it was obviously yeah, that was that's good to know. So I guess we should define like what is misophonia And I think we and can is it a different definition than Hyperacusis? Then.

Lindsey: [00:09:30] Yeah, well, it definitely is a different it is a it is different than hyperacusis as we know it. So. A lot of audiologists think hyperacusis is the loudness hyperacusis. So really there are four different types of hyperacusis. There's loudness hyperacusis as most audiologists know it by, right? So people who are sensitive to moderately loud sounds or even relatively soft sounds, they're so sensitive to those where other people are less sensitive or have kind of a normal sensitivity that's considered loudness. Hyperacusis So when you're testing LDLs and uncomfortable levels of loudness, that's what we're talking about is the the. Loudness hyperacusis. Then there is pain Hyperacusis. Which is when a sound elicits a physical pain in the ears. Okay, so this is and it's very specific, almost like a this is a horrible imagery, but but like a pencil being stabbed into the ear. And for that that's a medical referral. So when I see the pain hyperacusis, I'm like, okay, I'm that's not my specialty. I'm going to send you off, you know, to ENT because usually they need to take care of that in a different way. And they have found that with pain hyperacusis sound therapy is less effective. So they're coming up, they're, they're still researching it and coming up with effective treatments. Then you have fear hyperacusis, which we typically know it as Phonophobia They're interchangeable and they mean basically the same thing. They're it's just a different way of using the terminology and then annoyance hyperacusis, of course, is Misophonia.

Carrie: [00:11:16] Okay. Oh wow. And so yeah, there's I didn't know there was four types of hyperacusis too. So being kind of, I guess in a different realm of audiology, sometimes you learn different things along the way, But so kind of digging a little deeper into the topic of, of Misophonia two is what is the prevalence of the individuals that have misophonia.

Lindsey: [00:11:45] So there is a huge if you look at the literature, there's a huge range that is is listed anywhere from 5% to 20% to 79% of the population has some type of misophonia. And when you think about that, this is why I think there's such a big range, because you think about sounds that you don't like. And a good example is being bored. So that bothers almost everybody. I've very rarely ran into someone that's like, get like a high off of that sound, you know, it's the sound that everybody's like, Oh, I don't like that sound. It hurts in my body. It makes me feel frustrated. And that's a good example of Misophonia. Now, does how often does that happen, though? It really doesn't happen that often. How much does it affect your life? It doesn't really affect your life that much. And so unless you know you're in the classroom and maybe it does affect you that much. But, you know, I think the the prevalence is pretty close to about 6% of the population, in my opinion. When you're talking about severe misophonia that needs to be treated because similar to tinnitus, when we talk about tinnitus, someone can have tinnitus, but it's not affecting their life in a negative way this is there, Misophonia. You can have misophonia most people have sounds that they don't like or sounds that make them angry. But if they don't, if they don't hear that sound very often, then it's not necessarily something that they need to get treated right away. And then you have those where it's affecting just every every second of every day. And those are the patients that we really need to help and be there for.

Carrie: [00:13:38] Yeah, which I think is a great question. My next question was like, who is there kind of a, I guess a population that's typically affected more severely with Misophonia?

Lindsey: [00:13:50] Yeah. So that's a very good that's a very good question. And honestly, anybody, anybody can be affected by misophonia anybody can get it. So it's not just one population. Um, I've seen it, I've seen it all. I've seen it from, you know, a two year old to, you know, geriatric. It can happen to anyone, even without any other comorbid conditions. However, there are some conditions that we see a little bit more prevalence in, and that includes any any person that has any type of sensory disorder or depression and anxiety or who has the HSP personality trait, any type of neuro atypical diagnoses. We will often see some sort of sound sensitivity, whether that is loudness hyperacusis, the misophonia or a combination. A lot of times both another population that that kind of took us by surprise that we didn't really think about when we opened this clinic is a lot of the patients that Dr. JJ Wicker sees for auditory processing disorder end up coming to me to for sound sensitivity disorder. So we are really interested in doing some research to, to see. See if there is more of a prevalence for those that have auditory processing disorder to also have these sound sensitivity disorders as well.

Carrie: [00:15:23] Mm hm. Wow, That's interesting to to have that kind of connection. But it makes sense as far as having difficulty with auditory processing and then having some other auditory, you know, needs too. Yeah. So kind of getting into maybe a little bit more about the Misophonia, how what happens when someone has severe misophonia and what are their experiences typically?

Lindsey: [00:15:49] Okay. That that is the question that is such that's the big question. And you know you have your subjective what is the patient going through? What is the person going through when they have misophonia? And then you have the more objective like what is happening in the brain, in the body when you have misophonia so subjectively. Um, so I'll just give you a few examples of, of, of the way that, so.

Carrie: [00:16:14] I think examples are great. Yeah.

Lindsey: [00:16:16] Yeah. So I have one client who said that whenever she hears a specific sound, she, she says it feels like there's a horrible itch in her brain and she just can't scratch it. And I had another patient who every time he heard someone sniffle, he said he wanted to just crawl out of his skin. I've heard. I just want to pull my hair out. I just want to choke the person making that sound. Um, and a lot of times you will. You know, one of the questions I always ask patients is, do you have any thoughts of self-harm? Do you have any thoughts of harming others? And I think that as a profession, those are questions that we need to be very open to asking. And a lot of times with patients with Misophonia, what I found is they'll say, Yeah, in the moment I have these feelings, I want to hurt that person or I want to because it's this anger response in the body. It's this fight or flight response in the body and it's fight that comes out in some people they don't most of the time they don't act on it. They have the thought. And then when they when their central nervous system calms down after they've been exposed, they're able to, you know, be okay. But there is there there are patients who will scratch themselves, you know, when they or kind of clench their fists and and dig their fingers into their their hands or bang their head against the wall because it's it's so difficult to cope with what's going on on the inside of their head that they they do something on the outside to try to I don't know the right like.

Carrie: [00:17:59] Manage it or.

Lindsey: [00:18:00] Kind of Yeah. Kind of cope with it in that way. Um, so definitely that's what is subjectively going on. There is a physiological response. So a lot of times there is a tightening or a pain somewhere in the body. A lot of times it's like a tightness in the chest or the neck muscles tighten up. But I have had patients who their feet, their feet like clench up when whenever they hear that sound or their back. But it's very interesting when I ask people, when you hear that sound, do you get a pain in your body? Because, you know, of course we're looking for the pain in the ears. But a lot of times they'll say, Oh, it hurts. And I'll say, Where does it hurt? And they won't say it hurts in their ears. Most of the time they'll say, It hurts in my head, it hurts in my chest, it hurts in my belly, it hurts in my legs. And that's really interesting. So you have that with most patients. You have that feeling that they're getting physically in their body and then you have this emotion that they are getting in response to the sound. So there is they've done imaging studies on what happens to someone when they are triggered with their trigger sound. And there are at least seven different areas of the brain that light up when they when they've mapped this out. And all of those areas are attached to emotional regulation. And so it's very much a system where the auditory processing center and the emotion regulating system in the brain and physiological processes in the body are all connected.

Lindsey: [00:19:41] And so I think that really. That brings out the next question. Who should be treating this? Because it's a psychological thing. It's a physical thing. It is an auditory thing. So a lot of times we see occupational therapists, um, anybody in the mental health care field and then audiologists. And what I noticed when I was at the children's hospital was we were part of the rehab department and I would have occupational therapists come up to me all the time and they'd say, I just got a I just got a referral for Misophonia. I have no idea how to treat this. And and I have seen actually a psychologist in my office for her misophonia and she's like, I don't know how to treat this, but people come to us asking and we don't know how to treat it. And so there definitely are people who specialize in it. There are occupational therapists that specialize in it. There are audiologists that specialize in it, and there are mental health care professionals that specialize in it. And sometimes the case is so severe that you really need a combination of all three. Sometimes it can be handled by one. Sometimes you really need a combination of all three because all of those things need to be addressed in order to to really get that misophonia under control.

Carrie: [00:21:05] Yeah, I mean, especially when you have all those different experiences having that like inter-professional relationships with people that can kind of help out with whether it's a more sensory or a more auditory or more kind of, you know, physical things going on too right now.

Lindsey: [00:21:26] And unfortunately, when what we have seen is that when somebody who doesn't specialize in it or doesn't know exactly how to treat it, when they when they're well, well, excuse me, well meaning clinicians, they can treat it inappropriately and it can actually make the problem worse. So two of the ways that I've seen this is if a child sees a therapist and the therapist plays a say it's baby crying that they're reacting to. So the therapist plays the baby crying while the child is swinging on a swing. Okay? And they think, okay, so we're pairing this negative stimuli to this pleasant activity and, you know, that doesn't work. That's exposure therapy.

Carrie: [00:22:16] Yeah.

Lindsey: [00:22:17] And and it doesn't work because what's happening this misophonia misophonia is a conditioned response. So think back to Pavlov's dogs. We all, most of us remember Pavlov's dogs, right? So Pavlov had these dogs. He'd ring a bell, give him a steak or whatever, and then he found that they would start to salivate just from hearing the bell. That's how I kind of explained to people how this conditioned response to sound is. So you have this sound that at some point in time. Maybe trauma, maybe something else. The brain put it together as something that it needed to fear or to fight. Okay, so it got the limbic system involved. It got our autonomic nervous system involved. And so whenever that sound went off, just like Pavlov's dogs with the bell, the anger response or the the rage response or the anxiety response and then that feeling in the body, it went off just like the salivating of the dogs. Now, with treatment, I do just the opposite. So I with sound therapy, I deconditioned the response because what we also learn from Pavlov's dogs is eventually those dogs stop salivating after so long of not having that stimulus. So when I do active sound therapy, which I which I got from Jastreboff, that's what he recommended. Um, my goal is to present the sound in very small, very, very small chunks of time.

Lindsey: [00:23:56] Again, while they're doing something that they're happy doing, you know, having a good time playing a video game, anything. And then just a tiny, small chunk, very brief of the stimulus, but it's not quite like exposure therapy because we're trying to get it for for the patient to hear the sound without going to the fight or flight response without triggering. And by doing that, you can decondition the response in the body and in the brain to that sound. And even for my patients who have multiple sounds that they're dealing with, what I've noticed is that a lot of times if we can tackle the one that is is the most difficult for them or that is affecting their life the most, then a lot of times it will it will kind of transfer to to how they relate to other sounds as well. Sometimes it doesn't and we have to tackle each one at a time. But a lot of times, because our brain is so crazy and amazing and does all of these things that it thinks is good for us or thinks it's helping us and it's actually hurting us and making life harder for us, we just have to teach our brain what it is we want and how to get that. So yeah, a really long answer to your question.

Carrie: [00:25:13] No, that was a good one though. But I guess it kind of gets me back to another question. You talked about like, you know, your example of of the baby crying, for example, being a trigger. So what are some of the common triggers that you see when people come in for Misophonia?

Lindsey: [00:25:32] So there are definitely very common ones that people can relate to. Sniffling is a really common one. Um, coughing, mouth noises, eating. And what's interesting with Misophonia is that you can have the same physical response. Whether so if chewing, let's say chewing is the trigger, somebody could when they hear someone chewing, they trigger sets off their fight or flight response in their brain. They feel those really difficult feelings. But we also have found that even if they can't hear the sound, but they can just see it happening that they will still trigger. And so in my so when I'm doing treatments like this, I always make sure that when we're doing the active sound therapy, it's actually a video. So there's a visual and an auditory component to kind of help treat that. Um, I know that wasn't your question and now I've forgotten what your question was.

Carrie: [00:26:32] Yeah, no, we were just talking about the different triggers along the way, like, so you were like a lot of eating and like, chewing and sniffling.

Lindsey: [00:26:41] Yeah. So there's visual triggers and there's auditory triggers. It usually starts with auditory triggers and then it can be visual, it can be it can be a trigger just to one person, just to so even the sound that one person makes. But then if another person makes that sound, it's not triggering to them. Um, so chewing, sniffling, gross bodily noises, burping, those kind of things, whistling, um, those are all very common ones, but it really can be anything. And, and we've seen some really interesting ones. So baby crying is another one. And then you kind of have to, to weed out, okay, how much of this is loudness hyperacusis and how much is of this is the annoyance hyperacusis. Because you treat those two things differently and sometimes it's both. They've got the loudness hyperacusis and they've got the the misophonia or the annoyance h yperacusis So you start treating the, the loudness hyperacusis first and then you move into the annoyance Hyperacusis or the Misophonia. But we have had patients who have had very difficult, um. Triggers, such as I have one little guy and we're working with him because his mom's voice is a trigger. Now, that's a really hard thing. Your mom's voice and you're a child, and every time you hear your mom's voice, you trigger, um. Laughter So laughter is, you know, if that's your if that's your child's trigger, if that's your trigger, that's really hard.

Lindsey: [00:28:12] And that is definitely taking away from not only the patient's quality of life, but also those that are living with that patient and constantly walking on eggshells. I had one mom reach out to me who was pregnant and her daughter was her trigger was a baby crying. And they were terrified. They were terrified of this baby coming because their daughter was so reactive to and physically aggressive towards hearing a baby cry. So this is when you're talking about the severity and who should be treated and when. It's just kind of a normal phenomenon in our brain with the chalkboard. That's how that's kind of how you determine, well, who should be treated and to what lengths and in what order. All of that. And that's where questionnaires really come into play and getting as much information about the case as possible, trying to find out all the triggers. Is it just one trigger? Um, and is it only with one person? Those are usually the easiest ones to take care of. Um, but it, it really can be any sight or sound. And we found that a lot of times there is some form of trauma that kind of preceded this, this conditioned response. We can't always we can't always say that though. We can't always narrow it down to some kind of trauma.

Lindsey: [00:29:39] Now, as you stated, I ended up getting becoming a hypnotist, mostly for tinnitus. As I read that hypnotism could be helpful for tinnitus patients, but I have found it extremely helpful for Misophonia patients. And what's interesting is the when we do regression, they will have circumstances where they have heard the sound like sniffling and had a very strong emotion, like fear or sadness or, you know, being scared of the situation. And that's what, you know, it's a perfect combination, combination for the brain to be like, oh, we need to keep you safe when, you know, our subconscious brain is amazing and, you know, if you. So I had a patient who regressed back to a scene where he almost drowned and he his parents got him out and everybody was crying and he was scared and sniffling. And then he got yelled at because, you know, when you're a parent, you're scared. And it's like instead of like, comforting, like you comfort, but you're also like, what did you do that? And for a child, the brain is like, oh, okay, I hear that sound sniffling and I'm feeling this horrible feeling and I wasn't safe. And so your brain makes this this connection. And so it's very interesting. And that is that's definitely I'm sorry, I went on a tangent on that.

Lindsey: [00:31:10] But but definitely what I've seen in a lot of people and trauma means can can be big or small. I've I've had patients that they knew exactly like they were abused as a child and their dad yelled. And so whenever they hear a man yell, they go into the fight or flight. I mean, that is very obvious. But trauma to a child or even to an adult can be just anything that's very, very difficult, that has an emotional component to it. And then you add a sound component to it. And then when it gets all mixed together in the subconscious mind, then you get this conditioned response. And the more you hear it and the more you get that, that that response, the stronger it gets, which is why the exposure therapy is not great, because all you're doing is strengthening that conditioned response, because they may be swinging on the swing, but they're hearing that over and over again, over and over again. And they're they're responding. They're just in this constant state of of fear or fight or, you know, just the survival mode. So it's really when you're treating misophonia, it's really learning to treat a lot of different things at once. You are using sound therapy to help the brain understand. Passive sound therapy helps the brain understand that sound is safe and that some sounds we can block out.

Lindsey: [00:32:35] Active sound therapy is giving little chunks of the sound. That's the trigger. Um, where they don't actually trigger so that the brain starts to learn. Oh, I don't. Need trigger when I hear this sound or see this sight. Um, and then as time goes on, then you can increase that. So the point of misophonia training or therapy is, in my opinion, is to not have the patient ever trigger when they're doing their, their practices. And the biggest sign of success or predictor of success that I've seen in my patients is the patients who really put in the work. And I think this is one thing that is a deterrent for some patients to seek help is it takes a while. It takes kind of a while to to really retrain your brain and to learn new things. And, you know, combine that with cognitive behavioral therapy and combine that with strategies to regulate the central nervous system when you're, you know, your limbic system has gone haywire and you're in that flight or fight response and you need to learn how to kind of tone, you know, tone that down, so to speak. That's a very good way of saying it. But, um, so it's this very complex combination of things that can really help a person, but it does take work on their part. It does.

Lindsey: [00:34:09] Take daily. The.

Carrie: [00:34:12] Yeah. No. So I was going to ask you, though, Lindsay, like kind of going back to diagnosis, do you have a specific like test battery or is it more going through like what you said, deeper dives into questionnaires and case history? How how does that work? Yeah.

Lindsey: [00:34:32] So right now there is no real gold standard for making a diagnosis and there is no true diagnosis of misophonia yet, although I really think that will change. We've so much research has come out even in just the last year. This has really been a hot topic in especially in the psychology world, but there is no gold standard for how to test for it or diagnose it. However, there are some very, very good questionnaires that really can get to the heart of the feelings that are associated with certain sounds, both physical and emotional, and how severe it is. So even though there's not even really a very good way to say like, you know, with hearing loss, we're used to saying mild, moderate, severe, profound. And even with tinnitus, we have questionnaires that will kind of help us label it as such. Misophonia is a little bit more tricky. However, it's obvious when somebody needs help, you know, and it's obvious when it's severe. Um, so there are a lot of great questionnaires. I have my favorites. Um, but, and they're all accessible online and it's a great way to see, you know, they, they ask all the questions. The Sussex Misophonia scale is one of my favorites, but everybody kind of has a favorite who works in with this, and it's not the only one I use. Um, but I, but I like that one because it does have different, you know, subscales for emotional impact and avoidance and repulsion and, and things like that and pain. Um, another thing I always do LDL testing on my patients that come in, even for Misophonia, I always do an audiogram.

Lindsey: [00:36:20] I include LDL testing because so often we don't know that they actually have loudness hyperacusis in addition to the the misophonia. And when I have a patient that has both, most of the time I will treat the loudness hyperacusis before starting treatment on the Misophonia it's been a little bit more effective for my my practice to do it in that order. There are times when the misophonia is so destructive and so harmful that that we actually try to tackle that first. But that is one thing that I always do. You know, I'm I'm an audiologist at heart. And so I want to see what what else is going on in their the way their brain is processing loud sounds as well as how their brain is processing sounds they don't like. And a lot of times you get patients that come in and they'll say, you know, whenever I hear a helicopter, I get really angry. Okay, well, that's two different things that it could be that could be loudness hyperacusis because it might be the loudness that's just so loud. And then they get angry. But most likely it's both. They they have they're having a response to a loud sound and it's a very negative, physical, emotional response. And so, so the triggers helicopter. But they've got both. It's both of those things happening. So we kind of combine the therapies that way so that we can address both.

Lindsey: [00:37:52] Jeez, that one happened.

Lindsey: [00:37:53] That's really interesting is once you do overcome the misophonia the trigger. Um, let me give you an example. I had a patient who we, we got through. It took 12 weeks. And for most neurotypical people, 12 weeks is about average. Okay. That's a that's quite a while to everyday work practice something that. And what I tell patients is that 12 weeks is going to go by anyway, so you might as well improve your life in that 12 weeks. But I did have one patient. His trigger was hearing mouth noises through a microphone. So when you think I'm not going to make it the sound now because that would just anybody who may have that have misophonia would be triggered. And I hate doing that. Um, but we conquered that for him. He, he, he was very religious, a little cute. Eight year old kid, loved going to church, but he would just, just sit with his ears covered just in fear of that sound. And we got that sound. He overcame the sound so it didn't trigger him. It didn't give him the feeling of anger or rage or any of that when he heard it. But what happened? What was underlying that was a phonophobia. So he was going into fight or flight before, just out of fear of being in the presence of that sound, even though he'd overcome.

Lindsey: [00:39:23] That.

Lindsey: [00:39:24] Taking a trigger. So then we worked with the Phonophobia, the fear of being in the presence of that sound. And now he's great. He's great. So it's really just kind of this puzzle and unraveling this mystery. And every patient is different. And I love that. I love that. You know, it's it's you have to be very creative and think pediatric audiologists especially know that you have to be creative. And that's part of the fun. And that's part of the anxiety of it as well, is, you know, when something doesn't work and it's worked on so many other people, you have to you have to be like, okay, we're going to find something that works and we're going to figure this out. And you do. And there's so.

Lindsey: [00:40:03] Many. He did approach the patient who has who has misophonia that.

Lindsey: [00:40:12] There's always a solution. I feel that's that's one of my mottos is everything is figureoutable, right?

Carrie: [00:40:18] No, that's a great motto. But I know earlier we were kind of talking about, you know, there's a lot of not a lot, I should say a few OTS and a few psychologists and a few audiologists that really kind of specialize in misophonia. And just I know in our area, like the person that I was working with, their family was like, we've called around to like psychologists and different places. And we mentioned, you know, misophonia and they don't even know what we're talking about. Yeah. So I guess my question to you is I know you have like an online program, but what can people do if they don't have anyone that kind of specializes in there? Or do you have ways that people like to cope with everyday life?

Lindsey: [00:41:10] Well, they're definitely they can definitely look up ways to regulate the autonomic nervous system, but that is a coping technique that's not going to make the misophonia go away. So absolutely, I encourage, you know, researching different things that can help regulate the nervous system. And a lot of there's there's so much information out there on how to do that on YouTube, on Pinterest. You know, there are a lot of different techniques that you can do that are research based to help calm the central nervous system down after you've been triggered. So it's it's more of a bandaid than a fix. Right? But those are those are techniques I also teach my patients as we're going through those are also very important. And so if you're someone who has misophonia and you don't know where to go, there is nobody in your area and you're just trying to get through your day. Then definitely looking at ways to regulate your nervous system and trying different ways. I when I see my patients, I have give them 20 different types of ways that they can regulate their nervous system if they get triggered and they'll like some of them and they'll hate some some of them and all everybody's different. And that's why I give them like this huge bucket full of things that they can use.

Lindsey: [00:42:35] And we practice it in the clinic or, or virtually, if we're doing it virtually so that they can really have a tool to draw on in those moments when things are just really, really hard. And you know, it's really, really hard on, on our bodies, on our when our nervous system goes into that state and we can't get out of it, it's it's very traumatizing to our bodies. And and so that's my best recommendation as far as how to cope Now understanding that you really that's not going to eliminate the conditioned response in the the subconscious mind, in the brain, in the amygdala. You really have to to have somebody that knows what they're talking about. And this is this is where this is this is where the trouble lies. Right. Who knows what they're talking about? Yeah. And how do you find them? And this is this is why I created the online platform that I have, the sound immunity program. It's a coaching program. So, you know, audiologists know we can't we can't do telehealth. It's not a thing yet. Yeah. In most places. And so what I, what I, I got this idea from seeing other audiologists who had created tinnitus coaching programs and it allows a little bit more flexibility for people from all over the world to connect with you virtually to get coaching through their experience and to get guidance on on how to to get through this and and move past this.

Lindsey: [00:44:23] Now, of course, any type of program like that, it's a coaching program. You can't do any diagnostic testing. You can't make an official diagnosis. But there's still a lot that you can do for these people. And I now have patients from all over the world in all different time zones, and it's incredible. And I've also, um, created an online program that's kind of a self-paced program that has everything. So somebody who, you know, maybe is uncomfortable with the one on one face to face type thing, Um, we'll, you know, they can go through a course, a 12 week course, but they can do it at their own pace and then always go back to it and have that. And I felt that that was really important to to create because of exactly what you said. There's just not very many people that understand. And if you get someone that says, well, just wear headphones. Now you're going to make it worse.

Carrie: [00:45:20] And that was actually one of my next questions. I'm like headphones and no headphones. I think it um, yeah, it probably depends, but and where they're at in that process. But I know there's a lot of different answers for that.

Lindsey: [00:45:34] There are a lot of different answers and you know, headphones have their place. Noise reduction headphones have they have their place. And when I see so I've had patients or clients that come to me and they've worn headphones noise canceling headphones for seven years because their ABA therapist told them that that's what they needed to do to just to get through life, right? And so by the time they come to me, they have misophonia and such severe hyperacusis because they haven't gone anywhere in the world without these noise canceling headphones. And there is a way to still wear headphones. Noise canceling headphones without getting as much auditory deprivation and that is get headphones that will stream some sound in. So if you're going outside, so so if you know for these patients, I'm never going to say, nope, stop wearing your headphones because they will never be able. I mean, that's just it's that's too much. That's you can't do that. And so what I'll typically say is, okay, we're going to just try to reduce it like just a tiny little bit. We'll try, you know, try going, you know, holding the headphones out for ten seconds and then put them back, you know, and we start very, very slow. But another thing is, if you can stream some very soft white noise, pink noise, red noise, even some nature sounds, then at least their auditory system is getting, you know, a more broad range of stimulation and we're getting less of that auditory deprivation. Now for parents who, you know, they say, can we just use them for the fireworks or for. Of course, Yes. You know, you're not going to do damage. In fact, it's it's good to use them for those situations anytime, you know.

Lindsey: [00:47:24] But if you know, if it's just like a you're going to the kids museum and you're not far enough along in your therapy program to really be able to do it without your headphones, then wear your headphones if you can stream something to them even better. But I mean, the whole point is that we want to improve the quality of people's lives and so we don't want to take anything away from them. And when you're working with Misophonia and Hyperacusis and Phonophobia, it's a slow process and you have to be okay with that. If you're a professional that wants instant results or if you're a patient that wants instant results, you know, there is no instant thing that's just going to that's just going to help. And I wish there was. And you'll see ads on Facebook for things that say, if you have misophonia, this is what you need. And they they do have their place, right? Some of those things do have their place. But in reality, you want to avoid the use of headphones for noise cancellation purposes only as much as possible. And if you do need to use them, try to stream something to them. And there are a lot of great products on the market right now. Apple has some, Bose has some where you can still hear what's on the outside world, but then stream something that can kind of help your central nervous system. And then if there's a sound that's very bothersome, you can push a button and it can activate the noise reduction so that all you're hearing is the sound that's streaming, you know, to your ears. And so that's typically what I recommend to my patients who have worn headphones for a long time.

Carrie: [00:49:08] Okay. Yeah. Because I think being in the school system, especially working with some neurodiverse individuals too, there's a lot of headphones that are happening in a classroom and not that I've done any kind of misophonia questionnaires or anything with these kids, but it makes me think that they probably do have triggers. Yeah, absolutely sounds.

Lindsey: [00:49:33] And that's what's so hard is that as audiologists, we we know most of us know that by depriving the auditory system of sound, you're going to make hyperacusis loudness hyperacusis so much worse. I mean, it's, it's it's really it sounds counterintuitive, but when I see when I see parents or I'm talking to parents about these headphones being used all the time, you know, I say, really what we want to do is try to enrich the environment with with pleasant sound for as much of the time as we can. We don't want to deprive the ear of that that auditory system of hearing sound because then when you do your central nervous. System thinks this isn't right, this isn't safe, and then that's. So you're more likely to go into that fight flight freeze response. And that's just not what we want. We want just the opposite. So it seems counterintuitive to a lot of families, but we really, instead of taking sounds away in order to help the auditory system and the subconscious mind sort of get over this, we we want to put sounds in, put good sounds in and and strengthen the auditory system.

Carrie: [00:50:51] Yeah, that that's great. So overall, I feel like there's that Misophonia is definitely not cookie cutter at all. No. So and every individual is so different. So really like taking a deep dive into a questionnaire and case history and finding out more about what that patient is experiencing. And then like you said, it's a slow process that takes a long time and you can't expect to have quick results with it. Yeah. Is that thing so kind of wrapping up, I thought first, um, a couple of things. Did I miss anything like important as far as the question goes that you might want to think like our audience, you know, that kind of not to no pun intended, but like, it triggered your mind. Yeah. Did I miss something big that you're like, oh far Misophonia goes, This would be something I think we.

Lindsey: [00:51:57] Really talked about a lot of things. Um, I think it's important for as clinicians, as audiologists or as other type of professionals to, to be careful to stay within our scope of practice. And while I have trainings and I and I do things with my patients or with my clients through coaching, I know when something's out of my realm. I know if I've got somebody who really needs to be seeing a psychologist or a psychotherapist, we need to recognize that, you know, okay, now we need to this is out of sight of my scope of practice, and I feel like we really need to recognize that all professions, all professions do. And I and I feel like it's so important to be to have if you're going to work with with well, with any of it, with anybody. If you're going to work with anybody, you need to have a team of people that you know that you can work with together so that you know that patient or that client can really get the best results. And there have been times when I have gone through treatment with someone and we are not making progress. And it it appears that that they really do need more psychotherapy than they do sound therapy. And so I think admitting that is not wrong. It's honest and um, not trying to do something falsely or that you don't really know what you're doing, doing cognitive behavioral therapy. There are a lot of people who who audiologists within our scope of practice to do cognitive behavioral therapy with patients who have tinnitus and sound sensitivities.

Lindsey: [00:53:35] But you have to know how to do it. You can't just jump in and, you know, say, I'm going to give this a try. I'm going to give this a whirl. And so, you know, there's that. But then I guess the other thing just to wrap up is I think everybody is going to start seeing more and more about Misophonia and Phonophobia in the coming years, whatever that ends up being called or defined as, because even the definition isn't totally agreed on by different I mean, there's a whole committee, a consensus, a misophonia consensus committee to try to define what it even is and how to how to do all of this and how to treat it, how to, you know, do the intake, all of that. And that's great. But right now, we're still kind of in the beginning parts of this and there are a lot. There's a huge need. There are a lot of people that need help. And we're going to be hearing more and more about those in audiology and in psychology and in occupational therapy. So I think I'm excited. I can't wait. It seems like a new article comes out every every month and I just eat it up and I love it. And I think, I mean, even a year from now I may listen to all the things I said in this interview and think, Oh, well, that's okay. Now I have a better understanding of that. And oh, now I've changed, you know, just because.

Carrie: [00:55:01] Yeah, and that sounds like we're probably have to have another podcast because it is one of those like niches that we don't know enough yet. And as professionals, we know that what we believe today or what we know today, being a professional and getting more research may be different than what we do a year from now. And that's just keeping up with the literature and the research and being an ethical professional, right?

Lindsey: [00:55:30] Absolutely. Yep. That's perfectly stated.

Lindsey: [00:55:33] Yes.

Carrie: [00:55:34] So. Well, Lindsay, I cannot thank you enough for being part of the EmpowEAR Audiology podcast. I if our listeners have more questions for you, is there a good way to reach out to you?

Lindsey: [00:55:48] Sure they can go to. My email. It's a long one. I'm sorry. You know what?

Carrie: [00:55:54] I can put that in the show notes. I'll put the email in there. But can they? They can also visit your your guys's website, right?

Lindsey: [00:56:03] Yeah. So there's two websites. So we have one for our pediatric clinic which is little heroes hearing or you can go to sound and that's is is of course just for the sound sensitivity portion of what I do but I do free consultations or extended consultations. If somebody just wants to talk to me and try to get some ideas or try to to figure out what's best and so they can always schedule a free 15 minute consultation through sound And then we can kind of see if you know what some of the options are for them.

Carrie: [00:56:43] Okay. Well, thank you again for being a part of the EmpowEAR Audiology Podcast. It was such a great conversation and I'm sure our listeners will get so much new information as well as I hope that they reach out to you if they have a patient that they happen to be working with that has Misophonia and they need some different strategies and supports and therapies, they have a place to go to. Absolutely.

Lindsey: [00:57:11] I love talking to other audiologists and other professionals and kind of troubleshooting different cases, so please reach out to me. I love I obviously love to talk about this a lot.

Carrie: [00:57:22] So so I love hearing your passion in it because that's what we need is passionate professionals who are targeted in some of these areas. So thank you for all of that you do.

Lindsey: [00:57:36] Well, thank you. I really appreciate being here and letting my you letting me talk about all of this stuff that I just love to talk about.

Carrie: [00:57:46] All right. Well, thank you, listeners. If you love this podcast, please share it with others that you know so others can enjoy the EmpowEAR Audiology podcast.

Announcer: [00:57:57] This has been a production of the 3C Digital Media Network.

Episode 55: empowEAR Audiology - Thibault Duchemin (AVA)

Announcer: [00:00:00] Welcome to episode 55 of EmpowEAR Audiology with Dr. Carrie Spangler.

Carrie: [00:00:15] Welcome to the EmpowEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hi, welcome to the EmpowEAR Audiology podcast. And before I dive in today, I wanted to take a minute to share a bio about today's guest. I have Thibault Duchemin with me today, who grew up in Paris, France as the only hearing person in a deaf family. Sign Language was his first language, and he experienced from a very early age the multiple challenges that deaf and hard of hearing people face in understanding and communicating with the rest of society. Helping his family navigate between the hearing and the deaf worlds led him to find Ava, a mobile based artificial intelligence that empowers people with hearing challenges by allowing them to converse in real time with family, friends and coworkers. Thibault holds a double masters of engineering from the University of Berkeley and Paris Tech, and in 2017, he was named a Forbes 30 under 30 in consumer technology and is a member of the Hearing Loss Association of America Board of Trustees. So thank you for being a guest today and the EmpowerEAR AudiologyPodcast.

Thibault: [00:02:02] Thank you for having me, Carrie. It's a pleasure.

Carrie: [00:02:05] Yeah, well, I thought we would start off with your background story, your personal family story, and how that kind of guided you into your life purpose.

Thibault: [00:02:16] Yeah. So as you mentioned, I, I basically sort of like navigated through my family. So from the very beginning, the deaf and the hearing world. Um, I remember I think being 7 or 8 years old and doing my first demonstration in France with my family, where we can have like groups of us all together and we're defending sign language as a, as a language to be recognized by society. Um, so my parents and my sister are deaf and I was not born deaf, but grew up with sign language and kind of like, you know, obviously always kind of been facing those kind of challenges. Um, you know, I was at home at the end of the day discussing, you know, school, discussing work and seeing in many different ways, shapes and form the ways that, you know, challenging situations arise, moments of miscommunication, even more frequent. And all of this kind of like, you know, obviously growing up, you want to fix something. So you start by answering the phone. You start by intermediating and interpreting in situations where it's hard to find an interpreter. Parents are, you know, speaking sign language mainly. And I was always there until the moment I was not there anymore and kind of moved to the US and where the question of how can I continue to be a good family member, a good CODA sort of arise. And it led to Ava being one of the solutions for all the CODAS out there who are interested in and still helping and supporting their family in empowerment and autonomy.

Carrie: [00:04:00] Wow. Yeah. Sometimes I think it's our the challenges that we have along the way that make us very creative in problem solving.

Thibault: [00:04:09] Definitely.

Carrie: [00:04:11] So there's do you have any other stories to share about your experiences as a family role of being a CODA that you wanted to share before we move on to some of the AVA technology?

Thibault: [00:04:29] Yeah. I mean, I think, you know, I think it will be weaved across the interview, you know, just because of the questions that usually touch very real life situations. And I tend to really bring personal life and and situations just as examples. So let's let's let's move on to different topics and then, you know, we'll probably bring some stories there.

Carrie: [00:04:54] Okay. That sounds good. Um, so I know that I watched your TED talk that you did back in July, I think 20th of 2017, and it was titled Don't Silence Your Anger. Find your purpose with it. That's a pretty strong and emotionally driven title. Can you share a little more about how that title came to be?

Thibault: [00:05:18] Yeah, it's a strong title. Um, I would say sometimes people are afraid of strong emotions for sure. And, you know, we live in a society that tends to mislabel anger or really sort of designate it as an emotion to be afraid of for a reason. I think, you know, acting from a place of of speed and rush the emotional state doesn't always yield to great outcomes. I'm talking about a different kind of anger. It is something that sits with you. That is maybe what I would say is the healthy part of the anger. It always gives us a signal, right? Like if there's anger, there's, um, maybe a frustration that is being built up. There's a series of things that we, we find unfair or unjust that should not happen. And I think of anger not about the outcome that is created on society, but more the reason why it's even there. And that's what I pay attention to. And that's why I encourage people to think over it and pay attention to, you know, a lot of advice out there is find your passion. I say find your anger. Look at what it tells you about what is really important for you now. Because, you know, when you think about passion, so much of our passion is influenced by the society around us, right? Like we think we should be passionate about a certain thing and a certain way of living. But anger is just yet another key to say my passion is and sometimes for some people it can really open up a lot of thoughts and self-awareness around this. For me, you know, growing up in a deaf family, a lot of times I would see, you know, my my dad coming back from work and really being frustrated because somebody younger got promoted to be his or her manager.

Thibault: [00:07:11] Right. So you basically have situations where, you know, deaf/har of hearing people are not always promoted to the roles that they should be. There's assumptions and preconceptions about what they can do and what they cannot do. So they don't even bring the deaf person into the decision. That was just something that really frustrated me very young at the very young age and growing up. It's like, you know, watching your own father just not really being this father model because of those problems, like lead you to say, hey, you know, what can be done about this? So this is a personal example, but I found it resonating with a lot of other people. Um, you know, people come to me and they say, Hey, you know, I've not thought about this lens almost because maybe they were afraid to think about it or they kind of like throw the the whole thing, the baby with the water, right? Like, they don't want to to think about anger this way or they're taught to repress it or sort of like get rid of it. But really what it is, it's a scream. It's a signal. It's something that's been, you know, done wrong to me or is not sort of fully sitting with me. And I want to examine it. I want to explore it, and I want to understand what it wants to tell me. It's the message.

Carrie: [00:08:21] Yeah. So you definitely were able to take that anger and funnel it into a purpose. Yeah. You.

Thibault: [00:08:31] Yeah. It's a powerful motivation, I would say, today. I still obviously have the anger when new situations arises that we cannot, you know, honestly, it's like it's the empathy part, right? It's like you hear someone's story and it's in your circle of control, and there's this anger that fuels me to think about how can we do better? What can be more of service to our users, our customers, people who don't know us yet, and acting in ways that are just unconscious and not very thoughtful towards staff helping people. What can we do better so that we can impose a different standard that is more accessible and inclusive? I'll give you an example. You know, during COVID, where everybody sort of switched to different online platforms, that sort of thing, people really, really, really left out in person with masks. It was very hard for them to navigate. I mean, you know, can you imagine like relying on lip reading and suddenly from day to the next, having to basically ask other people to either trade off their health or with this whole kind of psycho situation or, you know, it's kind of like nodding and not knowing what the person just told you. And, you know, even online in their own organization, not really having a say about the solutions that are being kind of imposed. And a lot of those solutions didn't have captions or even ability to ask for captioners or interpreters to kind of connect in the call.

Thibault: [00:09:59] So the usability and experience of deaf/hard of hearing people were just terribly terrible. And a lot of times it was kind of revealing, um, I would say power struggles and different levels of dynamics. And so for us, like seeing this and watching it because we have we had a lot of users and deaf people all across the US and Europe facing those situations, asking us for help, like it led us to develop a version of AVA that also works online. So it's a desktop and mobile based application, just an app, but without talking too much about the product, really what it is behind is that we just get a signal and we get like to be very close to what actually the state of society is. It reveals a lot of unfairness And you know, when you have a lot of this unfairness on your on your chest, it's like there's one constructive way and healthy way to solve it, which is to funnel it into a I would say, a long term project, something that can actually chip at the problem. And there's another way to kind of process it, which is to yell and, and you know, it's just not like be unrestful with it. So I think the challenge of like processing that anger is important. But once you do this, it is a very powerful driver and fuel of energy.

Carrie: [00:11:16] Yeah. I'm glad you have been able to use your anger to drive you to productivity in the in your AVA business. But before we talk about AVA, I know a lot of people have experienced captioning on some level, but I think there can be a lot of confusion too about the terminology of different captioning. So for the purpose of our listeners today, could you give a little cliffnotes version of the difference between what is a subtitle versus closed captioning and open captioning and live captioning? Are those different captioning things?

Thibault: [00:11:55] So there's a big bucket typists is a is also a thing stereotyping, you know, fast typing, typing captions. Look, we live in a world where captions are everywhere now actually more than it was five years ago. And this is good. We have multiple senses and sometimes hearing is not always going to be there, no matter if we're deaf, hard of hearing or hearing. And captions are really are the visual way to transmit information. You know, obviously this is when you don't speak a visual language like sign language, but that's most of the world that is in this situation. And so that's why caption is really, you know, serving everybody who can see and who can read. Um, and I think, you know, captions capture the the, you know this whole job or purpose of transmitting the information with with text with language you know subtitles specifically is about like a prerecorded audio or video that you basically going to sort of like create the captions for. Um, and the file is basically subtitle and subtitling is basically taking something that is prerecorded already existing and adding captions to it. Um, the live captioning is when you do this online and you know, live, you know, where you don't have any sort of like weight or sort of delay between the moment it's being said and the moment you're captioning it to do live captioning.

Thibault: [00:13:29] You basically have multiplicity of technologies. Value typing means quick type in Latin and you know what that means is basically trying to go fast to type and caption You have broadcast captioning, you have stereotyping where you basically use shorthands to type faster and that's usually used in trials and the law just because of the sheer amount of of those situations that calligraphy is also a way to go faster. So there's this multiplicity of situations. We wanted to also simplify this by using the word scribe, by basically sort of saying, hey, you know, instead of kind of naming or having to choose between all of these different jobs, like let us introduce scribe captions, which are basically for us, like another process of creating captions that is being done live and is being done in awareness of the other person who is reading. So a scribe may have more information about the user and the person watching than typical captioners. And this is really kind of reconnecting us to the older, you know, function in  ___ where you had this intermediary between people who didn't know how to read and people who use the the writing, the written language. So we see scribes as more intermediaries and we use scribe captions, which is this professional 99% accurate in in real time technology that is based both on AI and on human accuracy.

Thibault: [00:14:59] Okay.

Carrie: [00:15:00] Yeah. There's so much out there and I agree the last five years has been a big boost. I think COVID helped some of that because a lot of people were like what you were saying, the deaf and hard of hearing community was kind of cut off. And for accessibility purposes, I feel like that really helped in that sense because people were angry about it and wanted something done.

Thibault: [00:15:25] Yes, petitions were made. I mean, we had just an explosion in people using our app and really sort of giving us feedback and then building with them different situations like the scribe service, the ability to use AVA online for Zoom meetings and and meet people where basically saying, Hey, I'm on this platform that, you know, is using this language or basically is in this software is a company software. I cannot, you know, sort of follow what's being spoken about. And we always had this approach of don't make more problems by creating solutions. I think sometimes people complexify what should should happen. So AVA is basically working on top of any situation or any conversation. So you don't need to sort of have an integration for a specific software. It is platform independent. Which kind of like helps you be autonomous. You come into a conversation that'd be online or in person meeting, and you basically have your own solution that will provide you basic level of understanding and expression. So it goes in both ways. And too often I have this situation where even today people use tools like we have the, you know, the captioning tool on Zoom. It's it's great. But the problem is what happens if what I'm saying or what is being printed on the screen is not correct. I have no way to correct it. If I want to answer something and I'm nonverbal and I'm deaf signing, right, I'm going to type in a chat so people can read it. But if you've actually been in a meeting, people are pretty quick at following and the audio space, they don't really look at the chat in real time. So as a deaf person, I'm going to be disadvantaged. So we basically built a series of tool to really help, you know, true integration and inclusion versus like basic compliance, which is accessibility. We go a bit further by just saying, Hey, how do we invest in autonomy? And I think that's kind of the direction of, of the captioning, sort of like state of the art today.

Carrie: [00:17:26] So kind of taking like maybe a little step back. I know you said the anger kind of fueled you to think about this as the purpose or a project that you are going to do. But how did you actually get started? I know you had the idea for AVA, but can you kind of back up and just kind of share how everything did get started?

Thibault: [00:17:50] Yeah, absolutely. Um, well, I think this is a process of building a company is first, you know, building a team around an idea and motivation. We've been always set on making the world more accessible for 450 million people, it's going even to 750 million over the next 20 years. So. The very early stage was a few encounters. You know, I come from a deaf world, like using sign language as a first language. I met a lot of deaf and hard of hearing people on campus in Berkeley where I got started. And at this time, it was really a time of, you know, a lot of hope, a lot of excitement about technology. And maybe at this point we didn't have. A lot of like sort of pessimistic views. So for me, it was really interesting to be at the forefront of machine learning technologies and in the same time, coming from a deaf or hard of hearing background, it's like knowing that this also technology is not often, you know, dictated. Like therefore I think people receive the developments of technology, but they don't get usually to participate in building those technologies. So for me, it was really, really important to, you know, have a say there. I had a sister at the time who was studying law and basically told me like, hey, you know, if I want to be a lawyer, there's no deaf lawyer in France, so how am I going to do? And so one of her first project very early on was to to actually kind of build a glove, a physical glove, to translate sign language.

Thibault: [00:19:25] This is something has been done over the years. You may have seen some videos. It's it got us started. And I would say unlike maybe 99% of the other teams who try to do this, we continued around the mission because in the end, it's like while the glove was maybe not the right form, there was something in there which was the immense pain and difficulties of integration in society of a lot of people. Not everybody. Some people are just very well integrated, autonomous and happy. But there was a really strong driver for us to work on accessibility. And what we noticed is that it was harder, specifically even in the US, we're supposed to be, you know, ADA accessible with a lot of structures. It's just felt that deaf people were still, you know, having difficulties in social situations and specifically group conversations. And when you think about it, it makes sense. You start seeing, you know, multiple people at a dinner table, right? And even a cocktail party situation. People speak. It gets loud in the background. It's like conversations. So sounds can be bouncing. There might be music in the background, right? Like all those deliciously horrible situations that we remember and and it makes it very tough to be in a situation where you're just like, just met someone. So that person may have an accent myself, have an accent, they have a message. And it's like all this thing that just actually how we meet new people, make new friends.

Thibault: [00:20:51] And so if this is not accessible, then it is really hard for a category of the population to make new friends, create professional opportunities. You know, it can happen in some structures like at work, but what about this happenstance, spontaneous thing? The best example is like me. And you know, here I'm bringing some personal stories, but me being next to my mom going shopping and really people going to her and asking her for directions, you know, like how many times can you just, you know, start a discussion with a stranger when someone asks you for a direction many times. Right. But when you're deaf hard of hearing, it can be harder. Much harder. Like my mom used to kind of answer like, hey, I don't hear now. She uses Ava, like she puts up her phone, her app and then says, Wait a moment. And then it captions what the other person says. And she can give that that part of kind of like being a great citizen, being a great member of society. So I think this socialization aspect for us felt the first domino work on this massive problem, you know, because in the end, it's very it's not a technology problem only. It is a full stack problem that requires a full stack solution. So it has multiple components. It's like how like how much patience we have when we are accommodating someone, how much attention we give to like undivided attention to somebody else in 1 to 1 coffee meeting versus in a group conversation.