empowEAR Audiology Podcast

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 frank.org.

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.

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 clinic.com or you can go to sound immunity.com 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 immunity.com. 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.