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You CAN Regain Your Hearing: One Man's Fight to Hear Again

Matt Hay shares his experience with adult-onset hearing loss as the result of Neurofibromatosis Type 2, and his unwavering perseverance to regain his ability to hear.



Hello. Welcome and this is Ask The Hearing Doctors. My name is Dr. Jenna Valania. I'm one of the audiologists at Hearing Doctors, the Washington DC Metro area's highest-rated audiology clinic with over 1500, five-star reviews. I'm very grateful to be joined today by Matt Hay. He was with us on one of our segments about the Redux equipment for hearing aids. And I'm really interested in hearing his story about his hearing loss, as he is someone with hearing loss.


Well thanks for having me this has been a fun day. You might end up with 1501, five-star reviews after today. Thank you.


Tell us a little bit about your hearing loss and how did you get to where you are today?


Sure. I guess the the short answer to that is, I'm 44 and I spent the first half of my life losing my hearing and the second half of my life regaining my hearing. The longer answer to that is, I grew up around lawn mowers and cutting firewood and I think in the 80s, at least in southern Indiana, we didn't give a whole lot of thought to hearing care. So, when I started failing some of those beep tests in school, we didn't think much of it. In my sophomore year at Indiana, I lost almost all the hearing in one ear. And I know that because on my landline telephone I stopped being able to uh to hear on the phone. My invincible frat guy, 19 year old mentality was that obviously there's something wrong with my phone. And uh when I got home that summer my parents were floored by how noticeable my hearing loss was. 


So, they sent me to an audiologist. I was happy to prove them wrong. Audiologist said, yeah, your hearing's pretty bad. We in fact think you need to go see an ENT because your results are coming back very inconclusive. The ENT said we want you to have an MRI. So, this is certainly not the direction I thought that appointment was going to go. The MRI showed bilateral acoustic neuromas. At the time they were about a centimeter or two centimeters each and I was diagnosed with Neurofibromatosis 2 or NF2. Which is a neurological disorder that means I lack a protein that you luckily have, um that prevents tumors from growing on your nerve sheaths. Because I don't have that protein, NF2 means tumors can grow on any nerve sheath in my body which is bad news, because you've got about 50 miles of nerves in your body. Um so I have uh the bilateral acoustic neuromas and a few other superficial nerves or superficial tumors. Um but that was the time when I met a surgeon and he said, Matt you're, you're probably going to lose your hearing. Like you need, at you know I'm 19-20 years old now and said, you need to prepare for a life where your hearing's um going to go away. Which is pretty, pretty hard words to hear even if you have good hearing. Hard words to hear.


Absolutely. So, at that time were you wearing a hearing aid? Or was this I mean, you went from I'm going to go and prove them wrong to the pretty much the opposite of what you were expecting to hear.


That's a great question. The hearing loss in one ear happened so quickly and really at 19 what do you know about hearing aids. And so, the uh when I got that diagnosis they said, you're at a point where you need to get aids. I was very fortunate that I was going to college at Indiana, it had an incredible Speech and Hearing Department. And I met the Director of the Speech and Hearing Department, and this would have been 1997 and Dr. Hipskind is still a very quick and close mentor and friend of mine. And in exchange for uh me allowing students to practice taking earmolds, uh he gave me free hearing aids and free hearing care. So about once a quarter, I would go over and sit in the basement and the students would line up with their caulk guns, and uh and you guys are terrible at your molds when your first years, and they would take these molds. But he taught me or told me it, made me aware of uh voc rehab, vocational rehabilitation and so because of that I was able to essentially get free uh hearing aids for the for the next five years of my life. 


So that's the good part. The bad part is is my hearing continued to decline because those tumors continued to grow on my hearing nerves. I was updating those hearing aids from in-the-canal to behind-the-ear, now I needed two aids. And then eventually started getting to a point where I wasn't even hearing with my aids, I was feeling, I mean I would feel the vibration. And um so it got to a point where we knew I was uh no longer going to get the help that I needed from a hearing aid, and we were looking at cochlear implants. But what separates and so I ended up looking at auditory brainstem implants. Which is something the FDA had approved just that year, so I mean to call it experimental is not a stretch.


Right. But a cochlea, a cochlear implant, and I certainly don't know the science of the ear like you do, but let's say there's ten steps. A cochlea can help on step five, cochlear implant helps on step five in your cochlea. Uh because my nerve damage was step 10 it's like having, I have my ears this perfectly paved highway with bright yellow, you know lines, but the bridge is out at the very end, and that's the hearing nerve. So, no kind of traditional hearing care was going to help me anymore. So, what the auditory brainstem implant does, and this is what I ended up getting, was they sew 21 electrodes onto the part of your brain that they think processes sound. And it looks like a tiny little fly swatter and some brilliant surgeons at the House Ear Institute in Los Angeles uh attached this little fly swatter to my brainstem. And say and they took out the larger tumor and said, uh we we hope, we think this is gonna work. We think you might hear life sound. So, I would six weeks later they turn it on with the expectation that I might hear life sounds.


Okay. So, what was what was that process like? If you don't mind me asking of course, if you don't mind sharing.


I I say this kind of half joking, but it's the truth. is that there's never been a better time in history to be hard of hearing. And there are so many reasons why that's true. When I went into this, the date for surgery was picked because I finally lost all my hearing. That even though I knew this day was coming and I had done everything I could to prepare for it, I had tried to learn sign and lip reading. Nothing prepares you for the day that you wake up and you can't hear. And and I can't overstate the heaviness of that. Of the idea of waking up and your hearing stops being a sense. That's one thing, like oh yeah that would be hard. But when you frame it as, what if your hearing was only a memory? Like what if you, what if hearing was only something that in your memory? And that's exactly what happens when you wake up deaf, is its a memory. Everything, every voice you've ever heard, the sound of your feet, the sound of your breath, not to mention music. Um, are you one day gonna hear your kids? Like that's all just that's all gone. You can't prepare for that. You know and I tried hard, but you can't prepare for that. 


So that was when they said, all right we're gonna schedule the surgery. Um so when somebody promises life noises, well, when you can't hear anything, life noises are pretty awesome. I don't even know what that means, but what it means is police sirens and oven timers. Okay. Uh an oven timer was a choir of angels when you can't hear anything. We just have evolved, our brain wants to process sound, and when you can't do that, your ears start ringing. And so, my my world wasn't quiet. Sure. Because I was serenaded with two freight trains in both ears all the time of just this incessant ringing. And so, the hope was the implants going to work. 


Now fortunately the surgery to remove the tumor was successful but I ended up with facial paralysis, which is a whole other thing. Um and the real, the real challenge with facial paralysis is when you prepare for not taking sound processing information in, but then you lose your ability to smile. You've now been, you've lost your ability to uh communicate out. So, you know communication is two-way street and I woke up after surgery with now both lanes closed and that was that was that was very hard. Um yeah, I fortunately could grow a little beard and cover some synkinesis and spent a decade doing facial rejuvenation exercises, so I have a little bit of smile back.


But um they turned the ABI on, and I was very fortunate that 12 of the 21 electrodes worked. Um I say fortunate because that meant I had 12 electrodes that sounded like a gravel truck. Uh and they said you know this is, this might be it. We're the most experienced ABI clinic in the world and we've done a couple hundred of these ever. You know the FDA just approved it a couple years ago. Um and so I became very Zen you know I would say, things don't sound right, and my audiologist a wonderful man named, Steve Otto would say, no that's just the way things sound now, man. I was like that's the attitude that I needed was. Right. And anybody with hearing loss can relate to this, you put in a new hearing aid and things don't sound right. There's a little bit of Zen involved in that. Of well you know what, this is the way things sound now. And a couple things can happen, I can work at it, I can practice, I can get used to it, um or I can just go through every day saying that doesn't sound right, that sounds bad. And I I didn't want that to be my future so I had to have a little bit of an attitude adjustment about how I would approach the way things sound.


Sure. And how, you mentioned that it's really hard to put into words what losing that sense is like. How was those first months, those first years? I mean right now if you were turned to face me this way, where I don't see the implant, you would have no idea. And as a professional I know the amount of work that goes into it. I know some of the professionals that you've worked with, and I know the amount of work that you've put into getting where you are today. How'd you do it? How did you learn to hear again?


Um yeah so, I think for me in life there's been um a two-step process to get places. One is deciding what you want to do. It's easy to say I want to hear again, but that wasn’t a motivation. That was that was the first step. The second step is finding the motivation to do that. And I think that's the really hard part. What motivation do I need to hear again? Well, I'm newly married. Um the idea of not hearing your wife say. “I love you” ever again that's a pretty freaking great motivation to try to hear a little bit better. Then you start thinking, am I ever going to hear my kids? And then you know you, I don't have kids yet, but in the future if they yeah I want to hear I love you, dad but more than that if they cry and need me and I can't hear that, um because I chose not to work hard enough to do that, shame on me. 


Um so, that was the motivation I needed. And I would say the first year I wore my implant every day and I hated it. Uh I mean I I everything sounded like gravel trucks and after a year everything sounded like gravel trucks. And after two years everything sounded like two gravel trucks. And that was a huge, I didn't know it at the time but that's huge huge process progress. I I'm probably going to oversimplify this, but my understanding of hearing is step one is awareness, step two is differentiation. If you can differentiate two different sounds that's a big deal. And so, but when your world sounds like two gravel trucks, and you can differentiate those that's kind of hard to get excited about. But I wore it, I wore it, I wore it. Um and it got a little better, it got a little better. Uh to a point where I could call my wife on the phone and when I would I would ask yes/ no questions and she would answer one for yes, two for no. Yes or no no. And that's how we would communicate on the phone and that was awesome. I could use the phone. 


Um but I mentioned there's never been a better time to be hard of hearing, Captel didn't exist, now it does. Texting didn't exist, now it does. What we know about brain hearing is so far away better than what it was 20 years ago. So those tools are out there. Um probably another lesson I learned, that you know there's I learned it about hearing but there's probably a lot of life lessons here is, if you just wait for the thing to come to you, it might. It might accidentally come. You know whether that's help, or um assistance, or a tool, or a professional. If you just sort of drift along and wait for that help to come, it might. But if you go out and look for it and you be intentional about trying to find that help and do that thing, it's going to come a lot faster. And so I made the decision to be intentional about what I was doing. 


Um fortunately I got, after 12 years I had about a 40 percent HINT recognition and everybody said holy cow, that's amazing for an ABI. And my brain kind of got fat and lazy. And said, ah you know I'm leading the minor leagues in home runs, right. You know I'm doing pretty well with my ABI. Um but then who had kids and I couldn't tell their voices and I thought well this is that new motivation that I needed. And I started listening to music and um and it was awful. And everything sounded the same, I couldn't tell the difference between dogs barking Jingle Bells and Pavarotti. I mean everything was the same. We had a CD from our wedding called, The Songs We Like, and it had been gathering dust and you know a Werther’s Original stuck to it and ah because it'd been in my console in my car and I hadn't listened to it in a decade. And I'm gonna start listening to those songs over and over and over again. Same 12 songs, a year later still nothing. And then one day we were in the car and my wife turns on the car and she gets ready to turn the music down, because when I'm not in the car she rocks out, now when I'm in the car we turn the music down. And I grabbed her wrist and said is that Crazy Game of Poker by O.A.R.? Which is a band we had seen at the House of Blues the year I lost my hearing. And we pulled over and cried. I heard music. Like I I we talked on the phone one for yes and two for no as of two years ago and today I heard the song on the radio. We listen to the rest of the song, the rest of the album never heard another word, but uh motivation, right?


I had identified the motivation I needed. Uh and I started using my own music therapy. Um and I now have a sixty-six song playlist because every time I work through a song over and over again. What I did wrong though, and the advice that the unsolicited advice I would give to somebody is, I did it on my own, and it's like learning to golf on your own or learning to swim on your own. There are professionals out there that are really good at this. And if I had known, or been brave enough to say, here's the thing I'm bad at, can you help me? We're all bad at asking for help. If I had done that what took me years to get to 66 songs might have taken months. That's a lesson I'm still trying to learn. But as in my role with Redux now, having the opportunity to meet with so many just amazing, dedicated hearing care professionals, um there are really great people to work with that can help. Whether it's speech understanding or auditory processing disorder or just I've had hearing aids and they don't work or they they get wet or whatever. There are some amazing solutions out there, right? Best time ever to be and in history to have have bad hearing.


So, you bring up a great point about how there are professionals that can help. With whether that's, oh I'm 19 years old, I'm in a frat and I think my phone is broken to now I have an ABI and I am learning to hear music again, I'm learning to hear my kids' voices. Something that we do here is we are adding in what's called auditory processing therapy and then the training that comes with it and the diagnosis of auditory processing disorder. And there are some things that people have the perception about audiologists that all they do is couple beeps, raise your hand okay, am I done now can I get out of this little booth. But you've sought out some auditory processing therapy and some training, can you tell me a little bit about, so you mentioned the HINT. So, to our viewers the HINT is a Hearing in Noise Test. Yep. What did that mean to you going from I can understand I can understand about 40 percent to where you are today?


So, I mentioned um doing things with intention. And when I first heard about auditory processing when I didn't know what it was and then when I learned more about it, I thought, well that's not going to help me I've had my implant for 17 years. What are you going to do in year 18 that I didn't do? So, I had very low expectations. And but what was different about this than anything I had ever done is for the first decade I thought I'm just going to hear better by existing in the world. There's no intention in just existing. And then but then, I started focusing on individual songs, I went from here to here and my hearing got better. And then I started working on individual words and my hearing got better. So, to me APD or APD training was just an additional extension of that, where now instead of working on words we're going to work on the specific sounds that make up words. The difference between ‘ma’ or ‘na’, well I shouldn't be able to hear that I'm deaf. I mean this thing stops touching my head, I am bilaterally totally deaf. Um and but practicing with such specific intention I, like I said, I didn't think it was going to work. And I know that the scores from that went up. But what does that mean to me? I don't know what those score, I don't know what I'm supposed to do with uh APD scores. But I do know HINT recognition. I know that I was at 40 before I started studying music. I moved to 60 over a five-year period of listening to music. I was at a 65 on my HINT scores in December of 2019. And in the pandemic, nobody did anything. 


This year I did 20 very intensive hours of APD training and the outcome of my most recent ABI implant or ABI mapping which is probably my 25th update, I went from 65 to 96 percent. So, my unaided open sentence recognition was 96 percent. I didn't do anything different except 20 hours of APD training. My HINT scores were high enough that for the first time ever, my audiologist said I'd like you to try AZBio sentences. But at this time, she knows that I'm very competitive with myself and I I care deeply about what those percentages are and what grade I can give myself. And she said, Matt you're gonna fail, like I just want you to be okay that these are just not even on the same page as the HINT sentences. And I scored a 78 percent. Um and and it's a C+ but I'm deaf, right? Like I'm deaf. My ears do nothing except keep my sunglasses from sliding off my face and my AZBio scores are 78 percent. And I I credit the professional training today. 


It's truly incredible, really. The amount of not only science that goes into hearing because right now just like you said, your ears are not, they’re not doing anything for you to help bring that sound up into that auditory pathway. But the combination of science and perseverance and that's just what I've been able to gain from your story and meeting individuals like you. The science is one thing, we give you the science. You get, you bring that perseverance back into every single appointment. And you're not just hearing in our one-hour appointment or in your one-hour appointment on auditory training, you're doing work every single day. And it's truly that dedication that keeps us as professionals moving forward. And keeps people that are brand new to hearing loss inspired to do better and to hear better. And we really thank you for sharing your story today.


I appreciate it and you're not asking this question, but I think if I can leave with one thing, it is I, walking in you're not scary at all, but walking in here if you have hearing loss is scary. It's get because I'm I'm gonna walk in and you're going to tell me what I'm bad at, and no nobody wants that. Um so I would encourage anybody listening to this to know that there's there's no better use of one hour of your time of just coming to learn. That there's nothing scary about being in here, you've got candy and water. You got to come in and just learn. And and I feel confident that if anybody is willing to take that step and be able to maybe put their ego aside and be okay at being bad at a thing. That you guys, you're here. You exist in this role to make them hear better. And um I have no doubt that they're going to find that as a good use of their time. Wonderful. Thank you so much for joining us today. Sure thing.


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