Matt Hay's Experience with NF2 and Auditory Brainstem Implants (ABIs)

What if your entire life changed at the age of 19? Matt Hay shares his incredible journey of sudden hearing loss due to neurofibromatosis type 2 (NF2) and the pivotal moment an audiologist recognized the need for further medical evaluation, leading to his diagnosis. This episode underscores the critical importance of comprehensive audiology practices and the life-altering impact of an accurate diagnosis.

Join us as we explore the pioneering world of auditory brainstem implants (ABI). From the early challenges at the House Ear Institute to the remarkable personal account of a patient who underwent the ABI procedure, we cover it all. Listen to how this groundbreaking technology transformed everyday sounds and interactions, reshaping lives, including Matt's, and even influencing his wife’s career path as they embarked on starting a family.

In a deeply touching segment, Matt opens up about the emotional and psychological toll of facial paralysis. He shares his experiences with visible and invisible disabilities and his profound gratitude for advancements in ABI technology. We also spotlight Blaise Delfino's inspiring contributions to hearing care advocacy and celebrate Matt’s heartfelt book, which has resonated deeply with our audience.

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Transcript

Speaker 1: 0:19

Thank you partners. Redux faster, drier, smarter, verified Cycle built for the entire hearing care practice. Otoset, the modern ear cleaning device. Fader plugs the world's first custom adjustable ear plug. Welcome back to another episode of the Hearing Matters podcast.

Speaker 2: 0:42

I'm your founder and host, blaise Delfino, and as a friendly reminder this podcast is separate from my work at Starkey. Hi, my name is Dr Douglas Beck, I'm an audiologist and you're listening to the Hearing Matters podcast. What we're doing today is we're interviewing my friend, matt Hay, and some of you have had the pleasure of reading his book already, but we're going to get into that in a little bit, matt.

Speaker 3: 1:11

First of all, I want to thank you for being here. It's great to see you. Good to see you too, doug. I know we've, over the years, traded texts and emails, but you're a busy guy, so this is actually just a chance for us to catch up.

Speaker 2: 1:18

This is a good time to catch up. I've been seeing online so much praise for the book and for your attitude, your competence, your stick-with-it-ness, your ability to keep getting back up, because you've been punched down in the nose a couple of times here and you just keep getting up and life just keeps getting better and I'm so proud of you. I want to start by talking about your hearing loss. How old were you when you first noticed that you had hearing loss?

Speaker 3: 1:42

So thanks for that. I appreciate the kind words, doug, and I do. I mean, technically I'm deaf. I'm deaf because, my well, my ears are pretty great. I mean, everything about my ears really works fine. They just aren't connected to my brain Right, and that is because the nerve that connects the hearing process to the brain was damaged from benign tumors. So I have a rare disease called neurofibromatosis type 2 or NF2. And it results in I lack a tumor suppressor gene that you're lucky enough to have that and as a result, benign tumors can grow on the nerve sheath anywhere in my body and they just happen to really like hearing nerves.

Speaker 2: 2:27

And you know this is not an unusual situation for people with NF2. I can recall when I was at house 35, 40 years ago, we would frequently see patients who had neurofibromatosis type 2, and it would cause acoustic neuromas to grow along the hearing nerve, which is much. You know the situation you're describing and these are, as you said, benign tumors. But even though they're benign, they can compress the brainstem as they grow. And so you know, if the tumor is growing and diagnosed, it makes good sense to have them removed, and the problem with that, of course, is the number one way to get at them is through a trans-labyrinthine craniotomy, which pretty much drills through the inner ear to get access to those tumors. So that's the situation that you found yourself in.

Speaker 3: 3:15

Yeah, and you mentioned it is an acoustic neuroma, which is not too uncommon. There are a lot of people out there that lose hearing in one side because of an acoustic neuroma. But you're right, the word benign is actually a poor description, because having two or three centimeter tumors compressing your brainstem is anything but benign. Exactly, and what is unique about NF2 is it's a bilateral acoustic neuroma. So I was 19, to answer your initial question was 19 in college and over the course of a semester, lost the ability to hear on a phone just in a matter of months, and so I didn't realize it at the time. But this is also one of the reasons I'm so proud to be here. I'm proud to know you guys and the work that you and your colleagues do is.

Speaker 3: 4:04

I went to an audiologist and I could have very easily been sit with a hearing aid and sent on my way. I didn't recognize the benefit and privilege and opportunity. I had to go to an audiologist this is in Evansville, indiana, in 2004 and have an audiologist that said your tests are not coming back. The way I have been trained to read tests in Indian University and my AudD program, I really think that you need to see an ENT and have an MRI, I assumed that meant this audiologist did not know enough about what they were doing. I realized in hindsight how fortunate I was because you mentioned best practices in this in the introduction. That was a best practice.

Speaker 2: 4:48

It certainly was, and it's so important that I want to make this distinction here, because good practices are fine and a lot of people will do, you know, traditional audiometry in their office.

Speaker 2: 5:02

The problem with traditional audiometry and the problem with screenings hearing screenings is you could have a situation much like you had, matt, and it would be invisible to the clinician quite often, and so they might say, well, gee, you've passed a screening, or gee, your hearing appears to be within normal limits, but that doesn't necessarily explain the distortion that you're perceiving.

Speaker 2: 5:31

And you know, when we do best practices and best practices are not not necessarily, you know, a local choice these are practices that have been written by subject matter experts who have been in their profession for a very long period of time, and they are written by the American Academy of Audiology, the International Hearing Society, the American Speech Language Hearing Association, those national groups. They write best practices, all of which include basic diagnostics, but then they also say listening and communication assessments and speech and noise tests and acoustic reflexes and other sophisticated tests that are designed to help us see the forest for the trees. If we're just doing screenings and basic audiometry tests, we don't have the ability to gather all the information we need to make the very best referral. In your case, clearly that made a huge difference.

Speaker 3: 6:19

And I think it's accurate to say I took that for granted because, I mean, I'm just a 19-year-old kid at the time who wants to be able to watch SportsCenter without having the volume up to 99 on the TV at a fraternity house. So my concern was very short-sighted. But I look back now and realize what an opportunity that was and that was really the first step that put me on a path toward patient advocacy and best practices, of recognizing how much my life I mean it really changed that day because four days later I had an accurate diagnosis for a disease that impacts one in 40,000 people. I know now that rare disease diagnosis can take four years. It took me four days and it happened because of a hearing care professional who was able to put their maybe ego or aside and say I don't, my tests are not telling me what I think they're supposed to tell me. I think we need more help. And I get goosebumps saying that now because how fortunate am I to have had that level of care that early on in my hearing loss experience.

Speaker 2: 7:32

And what year was that, Matt, when you got diagnosed?

Speaker 3: 7:35

It would have been about 2000. Well, that first diagnosis would have been 1997. So I was a student at IU and living in Evansville and in 1997, you know, mris were still pretty new.

Speaker 2: 7:47

I mean, you know, this is an amazing thing. We think of these things now and say, oh yeah, just go get that done. But in 1997, it was a very expensive test and people didn't want to do it unless they had a darn good reason to order it, because somebody's going to have to pay for it. And now the MRIs, of course, are even much more specific, much more accurate, smaller slices, and we can see more detail. But so in 97, you got your diagnosis and then did you try hearing aids along the way, or did you just not do that?

Speaker 3: 9:32

So I was very fortunate in being at Indian University and the speech and hearing program that they had there again of just sort of falling into the right place at the right time.

Speaker 3: 9:45

Someone I worked with at Indiana happened to be the son-in-law of Dr Hipskin, who ran the speech and hearing program at Indiana and has been a friend now for 30 years.

Speaker 3: 9:57

And I get into this a little bit in the book because there's some funny anecdotes that happen when you're a cocky 19-year-old trying to get fitted for hearing aids. But I was able to meet somebody that said, hey, I think there's an opportunity here for us to help you and for you to help my speech and hearing program. And so I was fitted and I remember at the time so this would have been 97. He was very excited because I was the first patient at Indiana university to get fitted with a digital aid and I remember how excited they were about a digital aid and I thought I could not care less, like I just want to hear better. Well, I don't care about the technology, um, and I remember him explaining the the way that this would be programmed and his students, you know, had the opportunity to to program a digital hearing aid for the first time and I thought I just, I just want to hear SportsCenter.

Speaker 2: 10:47

I know, I know, well, it's a great story and you do detail it in the book. But but you know, shout out to Indiana University. I mean, it's a brilliant medical school. To the best of my recollection, I think at that period in time, dr Richard Miyamoto was the chair at Indiana and I met Rich through multiple meetings at the Househear Institute 20 years before that, and you know he was an incredibly talented surgeon and a wonderful guy. And even the audiology program there was brilliant. Everything about Indiana University, the medical school communication disorders audiology program. There was brilliant. Everything about Indiana University, the medical school communication disorders audiology all aces. It was fantastic. So you were at Indiana as an undergraduate and you had your audio done and then did you get to meet any of those surgeons or physicians from Indiana University Medical School?

Speaker 3: 11:36

So I did, and you're right Although he's not rich to me he's Dr Miyamoto After being diagnosed while a student at IU in Indiana is where I had my MRI and then they referred me to the speech and hearing program there, and so just another matter of good timing and luck and maybe some privilege of having insurance that would cover that the physician that was attending was Dr Miyamoto. So here I am, using my hearing because of an acoustic neuroma or bilateral acoustic neuromas, and I'm being seen by at the time potentially like the leading cochlear implant surgeon in America. And you're right, he sat very early on between Dr Miyamoto, dr Hitskin, my hearing care in Evansville.

Speaker 2: 12:23

The bar was set very high for patient-centered care, great group, absolutely All right. So you got your diagnosis. You met with Dr Miyamoto. Did you ever get a cochlear implant?

Speaker 3: 12:35

So that was the initial reaction was is this a CI candidate? As they look more closely and understanding with my neurofibromatosis 2 diagnosis, that a CI might work for a little bit. But as that nerve continues to deteriorate because of the tumor, the CI was not going to work long-term, just like a hearing aid wouldn't work long-term. So at that point in my life I had evolved from an in-the-canal aid my hearing declined more. I went to the behind-the-ear aid my hearing declined more. They started messing with different types of domes and different ways to get more amplification. But we knew that a CI would just be a surgery that would only help me in a short term because eventually the nerve was going to give out. So that's when we started having conversations not about a CI but an AVI, which is an auditory brainstem implant.

Speaker 2: 13:28

Right and auditory brainstem implant started also at the House Ear Institute with Dr William F House and one of the surgeons who studied under Dr House and they were great, great friends was Dr Daryl Brackman. And I had worked with Dr Brackman many, many times Dr House as well, in the operating rooms at the House-Heer Institute and it was such an amazing time and such an amazing place because we would. When we were starting to investigate cochlear implants, you know we had four major centers in the US you had New York, you had San Francisco, you had Los Angeles and you had Salt Lake City and we all worked collaboratively and it was a brilliant, brilliant time. But as far as auditory brainstem implants went, because Bill House had operated on quite a few people with NF2, and it was a major issue what do you do after you take out the second acoustic neuroma? And now you've left the patient deaf, although you know healthy but deaf otherwise. And the question was could you put an electrode directly on the brainstem? And we had a whole team of folks in the basement at the House Ear Institute working on that for a number of years before you received that implant. First one I was involved with was 1987. A very dear friend of mine who unfortunately passed in the last year or two.

Speaker 2: 14:44

Dr Franco Portillo, designed that electrode that sits on the ventral dorsal cochlear nuclei of the brainstem and when we first started to find candidates for the auditory brainstem implant we weren't quite sure who we were looking for and what the outcomes were going to be. And there were some great, great stories about that, because the neurosurgeon who worked with Bill House was Bill Hitzelberger and I remember I sat down with Hitzelberger and Bill House one day and I said how did you guys ever get these things approved through the IRB, the Institutional Review Board, and Bill Hitzelberger, you know, back in those days there was no IRB approval Cochlear implants. You know we would just have the patient certify and understand that they knew what we were going to do and why we were going to do it and what we were hoping the outcome would be. In this Bill House, bill Hitzelberger, those guys, they would talk to the patients, tell them about the expected outcomes and what they thought they could do, but they never promised anybody a result.

Speaker 2: 15:54

And you are remarkable, I mean you right now are listening through your auditory brainstem implant. We're both on computers a couple of thousand miles away and I'm conversing with you just like I would if you had, you know, particularly normal hearing, and we're in the same room. I mean, it's absolutely astounding how well you do Tell me your thoughts on auditory brainstem implants. When somebody asks you to tell, what is it like to hear through an auditory brainstem implant?

Speaker 3: 16:22

Well, first of all, I'm hearing you share these stories, the same in real time, the same as anybody else. So I think one of the um, a bit of serendipity for me in this conversation is, I hope listeners recognize that they're hearing a clinical side and then hearing a patient side back to back, which is is uh, as an advocate, that's kind of an ideal scenario to me. So you're explaining these conversations, uh, or you're explaining these conversations, uh, you're explaining the experience that you had in la and I'm thinking I lived this of a guy talking to miyamoto in indianapolis and dr miyamoto says you need an avi and I'm I mean, I remember making these notes and my, my girlfriend at the time, making notes of like what ABI stands for, and they're like you need to go to LA because there's a guy named Dr Brackman and a guy named Dr Hitzelberg who have the most experience doing this. I spent, I went to LA 12 times and we did pre-op and when I eventually lost all of my hearing, we flew to LA and I had my ABI implanted. Dr Hitzelberg did the cutting and Dr Brackman did the implanting and then Steve Otto was the audiologist in the end that turned it on. So I feel like I'm living or walking down the path that you and a few other folks helped pave, five years after you got done paving it.

Speaker 3: 17:42

So this is exciting for me to hear that aspect of it. So the ABI was explained to me and you can imagine it now I'm 22, somebody saying we're going to sew electrodes directly to your brain and we think that's the part of your brain that processes sand. But the outcomes are wildly divergent and when you start messing with a brainstem you know there's there's some inherent risk in that surgery and that implanting. I was still young and I don't know, maybe egotistical enough that I thought, oh, it's going to be fine, it'll be fine. So I had the surgery done and you have to go back quarterly for mapping or programming. Steve Otto there did a wonderful job of managing my expectations, expectations, and I think this is a really important thing for people in hearing care to understand the balance of being able to manage expectations without limiting what a patient is capable of doing.

Speaker 2: 18:36

Exactly.

Speaker 3: 18:36

Because I did get a little bit of a limiter because most AVI's, if they worked at all, that was reasons for high fiving. You know, you and your friends in the basement would high five if you had heard. My implant eight weeks later turned on and I heard anything and there were no negative side effects. For two years everything with my EVI sounded like a bottle cap in a garbage disposal or like wadding up aluminum foil. But I was told that would be the expectation. Be the expectation.

Speaker 3: 19:51

I will tell you, as frustrating as that sounds or unpleasant as that sounds, when you live in a hearing world and deaf culture capital D, deaf culture is not your culture, but you are thrown into that because you're now deaf. It is lonely and terrifying because that wasn't my people, so there was nothing wrong with being deaf. It that wasn't my people, so I did I. There wasn't nothing wrong with being deaf. It just wasn't right for me being able to hear an oven timer and not burn a pizza, being able to hear click, clack, click, clack and know that meant my wife was home right, because I could hear her shoes on a hardwood floor. Those are amazing sounds to hear, even if you can't differentiate between an oven timer and click clack of shoes or a thunderbolt. Being able to hear anything was life alteringly positive. And so I thought, if my ABI gives me that I have met the expectations, and I'm happy with it. And that was the case for about four years. And then we had kids.

Speaker 2: 20:55

Before we get to the kids. So I noticed in the book your wife was a medical student. Soon after you met she had gone to medical school and somewhere in your journey together she decided that that wasn't the right path for her. Can you tell me about that?

Speaker 3: 21:13

Sure, I hope the theme here doesn't become how self-centered I was at 19, 20, 21. But again, going back to my mentality, at that point we had only been dating for about six months and my health declined quickly because of NF and I'd had a spine surgery and was facing deafness and brain surgery. That's a lot for a lovely young woman in med school to have to decide. This is something I want to choose. I can't choose not to do this. I can't walk away from it. She can, and I guess we've been married 20 years now.

Speaker 3: 21:50

I guess she still could, but fortunately she hasn't. And I thought well, I don't want you to do that for me. I don't want you to walk away from this for me, and I don't think I've ever loved her more than in the moment where she said what makes you think this is about you? I love it. You know I'm choosing my journey for what's best for me. She does not like making things about her for me, um, she does not like making things about her, and so I like to point out that that she is as wonderful as anyone reading the book might think she is.

Speaker 1: 22:22

She really is that great?

Speaker 3: 22:24

and she's perfect for me. I think bigger she doesn't represent, you know, a, a mom or a wife on a pedestal. She represents a support network and a support structure that anybody going through a hard time you know. You mentioned earlier on Doug an ability to get back up. I can get back up because I have somebody extending a hand to me to help me up, and my journey has been hard. I mean, I've had 20 surgeries and I'm deaf and I hear with 12 electrodes and I don't have balance or facial movement or blinking or tearing. But it's easier when you have a support network around you physically, emotionally, and so my wife Nora has been that. But she also represents that support network that I hope everybody finds or has.

Speaker 2: 23:13

That's absolutely incredible and I'm so happy for you. You're a very lucky man, but you know she's a lucky woman as well. One of, not one. Quite a few of your surgeries involved eyelid surgery, and I'll just do the backstory on that.

Speaker 2: 23:29

With acoustic neuromas and other skull-based tumors, sometimes the nerves that innervate the eyelid that allows it to open and close, get a little bit beat up in that surgery. And what happens then is we have to tape the eye closed and we have to keep it lubricated to prevent corneal damage from occurring. And in your case you had a self-closing spring installed and that didn't work out so well and it took a while for that to come around and be a success story for you. What we used to do when when I was at house in the early and mid eighties on patients who had facial weakness following surgery, we would actually put a gold, tiny gold plate into the eyelid so that the eyelid would drop, and that's a different nerve than the one that picks it up. And when I was reading the very detailed story about your left eye and all of that, I was wondering. But obviously you know the surgeons made the best decisions with the information they had and you've got a wonderful outcome at this point, you know.

Speaker 3: 24:30

I thought it was important to include that Again. Certainly, my story is just about me and my experience, but I tried to come at this from a perspective of it's not a story about losing your hearing and having eye surgery Certainly that is I write about that but I try to look at it from a perspective of you might see the challenge I'm going through and people might think, oh, matt can't hear. Well, they don't realize not being able to tear or blink causes more day-to-day difficulty than not being able to hear, and I think that's representative of we might think we know what someone is going through but we don't. Or the thing that might be an obvious challenge for someone based on our impression of them, them might not be the thing that they are really struggling with at all, and I think I hope that could be relatable to a lot of people.

Speaker 2: 25:22

I think it's so important, matt, because it's a. It's a topic that does not come up in clinical conversation often, but it's a major problem in somebody's life when you can't blink at a normal rate and your eye doesn't self-lubricate and you can't clear debris and your cornea dries up. And when we talk about facial weakness, you and I discussed this a few weeks ago, but there's a scale that we use to grade facial weakness and it was developed by Daryl Brackman and John House no, probably 30, 35 years ago and it goes on a grade one through six, and one is perfectly normal. Six is no motion at all, Two is a mild weakness and when you think about Sylvester Stallone right, rocky, he had probably a grade two if I were to look at him. Grade three is mild, with eye closure. Grade four means you don't have eye closure and a mild or moderate weakness. Five no eye closure and a more significant weakness. And six no eye closure and you can't move your face because of the facial nerve activity that happened during surgery iatrogenic injury.

Speaker 2: 26:28

So you can see levels four, five and six all involve bad or weak or no closure of the eye. So it does happen and it, but it's not something that most patients ever talk about or or discuss, and and very few have had to have quite as many surgeries for that issue as you did. But I'm I'm not doubting the surgical surgical decisions at all. I think you know you had a unique situation that they dealt with very well and it came out pretty good for you. So you went through all of these experiences and I would be remiss if I didn't mention that your actual surgeon's surgeon, in addition to the neurosurgeon, dr William Hitzelberger, was a neurotologist and a dear friend, dr Daryl Brackman. What was your experience with Dr Brackman?

Speaker 3: 27:14

Yeah, that's exactly right. And so again, it sounds silly to say but boy, there was never a better time in history to lose your hearing, because if it had happened five years sooner, I would have been a step behind each one of these things. I mean, the FDA approved the AVI four years before I had it implanted, knowing what I know about medicine. The FDA knowing what I know about medicine. Now the FDA doesn't approve something and it starts getting implanted the next day. So four years is actually a pretty quick turnaround when it takes time for someone to be exposed to it, trained on it, develop an expertise in it. So it was still very cutting edge at the time, enough that even Dr Miyamoto said I'm not comfortable. I've done hundreds and hundreds of CI surgeries and I'm not comfortable doing this. I think you need to go to LA. And you're right about the House-Brackman facial scale, because when I woke up with facial paralysis initially, you think, well, if the scale for measuring this is named after my surgeon, that's probably a good sign.

Speaker 3: 28:19

But, the flip side of that is well, wait how many times if they had to deal with this, if they had to develop a scale. So I chose to think of it in a more positive manner. But you know, another aspect of that, though, is hearing loss is invisible. You know, other people can't see hearing loss. It's a physical thing, that it's presumed to be, a physical thing that people try to manage.

Speaker 3: 28:44

It's difficult, unless you have been there, to appreciate the mental and emotional side of maybe feeling left out or not picking up on something, or being the only one in a room that doesn't know why someone is laughing. To add on top of that facial paralysis where they if I look in the mirror, I look the same, whether I can hear or not. But when you look in the mirror and you have facial paralysis and that face looking back at you doesn't look like you think it's supposed to look, there's a psychological and emotional toll, and I was not prepared for that. I had spent a decade preparing for hearing loss. I had not spent a second being prepared for it's not just I can't blink, but I can't smile. I mean my coping mechanism for dealing with hearing loss, yeah.

Speaker 2: 29:32

And you're right. I mean, you can't blink, you can't smile, you can't eat comfortably. Food tends to fall out of the paralyzed side.

Speaker 3: 29:41

Yeah, oh, doug, I've never met a bowl of soup I can't spill. I mean, if I have chili, you'll know it for a week. Yeah, you will, okay.

Speaker 2: 29:51

Now, before I let you go because you've been very gracious with your time two things I want to talk about. One is I remember in the book and I love this I reread this section a couple of times over. You knew you were going deaf, you knew you were going to lose your hearing, and so you thought about this and you and I have very similar tastes in music but I didn't know what you chose. You chose that you wanted to have a song to listen to as the last song you would hear through your own natural ears, and it had to be a very moving, very emotional, very brilliant song. So what song did you choose?

Speaker 3: 30:23

So my wife and I wake up every day to here Comes the Sun, and we have a little Sony alarm clock CD alarm clock at the time, and that was our wake up song. And so you know, and I write about this pretty extensively uh, is that last day of hearing? And I don't, I don't want to give it away, but the last day of hearing, if you can only hear one more song, what's that going to be? If you can only hear one more thing, what that's going to be? And so you know, here comes the sun was the song that played a pivotal role in that. Um, you know, and then then the next day you can't hear. There's a lot, there's a lot that goes into that.

Speaker 3: 31:00

But you're right, the title of the book is Soundtrack of Silence, because I just had this really unique circumstance where, if I'm never going to hear again, what songs do I want stuck in my head, like, what songs do I want to be thinking about in my head for the rest of my life? And what I didn't expect is. So that in itself is a story. But I think what is particularly unique about this is, I mentioned earlier, we had kids and, uh, after I lost my hearing, and that was the additional kick I needed to say being able to hear oven timers is not going to be enough for me. Uh, or maybe that's what I will live with, but it won't be for a lack of trying to do more. And I was not trying to do more.

Speaker 3: 31:46

I sort of self-diagosed auditory brainstem implant training and said if I have these songs stuck in my head and I was listening to them with such intention why don't I start listening to those again? It hopes that those songs in my brain can tell my ABI. This is what those songs are supposed to sound like. You think the opening chord of let it be. You know, there is bum, bum, bum, but it's not. It's this. And so can I start creating an argument between my brain and the technology, the 12 electrodes, because right now my brain's losing that conversation. And so can I use John, paul, george and Ringo to help convince my ABI. This is the way things sound.

Speaker 3: 32:31

And again, some more um detail here. In the books, a seven or eight hour read. And again some more detail here. I mean the book's a seven or eight hour read, so it's hard to cover all of this in a short time, but I talk about the day that I was able to recognize a song again, and that was a very powerful moment because not only was music the thing I turned to ahead of my hearing loss, but music was the thing that I can attribute to improving my hearing loss even after getting my implant. And I don't think that's an aspect of music very many. Maybe you thought about that as a dream in the basement at the House Ear Institute in 87, but that was a real part of my life.

Speaker 2: 33:10

This is an amazing self-rehabilitation program you put yourself on and I'm just thrilled that you did it. And it's one of those things that we used to encourage people back in the 80s when they got cochlear implants. We would say you know books on tape, read familiar things, have people that love you, read to you so that you know it's a script that you're already familiar with. So the words, the story, so you can start to take in sound and line that up with your brain, because your brain is plastic through your whole life. It's more plastic when you're younger but your brain can adapt if given good information.

Speaker 3: 33:45

Well, and what was unexpected for me was once I started thinking about things in terms of brain hearing and brain learning, versus because, again, my ears don't do anything except keep glasses from falling off my face, so it's everything I hear is directly to my brain. So I, all of a sudden, and just in the last few years I hit my audiologist has started using the phrase brain hearing. Using the phrase brain hearing, I've had the good fortune to work with, just in the last month, nina Krauss and Carol Flexer and Angela Alexander and Carolyn Herbert at IU, and all of these just brilliant women that are focused on brain learning. And when I, when Angela Alexander started sharing with me some of the work she was doing in auditory processing disorder training, I agreed to work with her and I said, angela, I'm on year 16 with my implant. You're not going to help me Like I, I will do this. At the time I was working with a wonderful company still a wonderful company called Redux, and I was like I'll do this with you If you, in exchange, you say nice things about Redux. Um, so she said, let's just see what happens.

Speaker 3: 34:55

And we spent about 20 hours together working on phonemes and really my life had been trying to hear better by osmosis and then focusing on individual songs and then lines of songs. It took my conversation with her and the work she was doing with jack Katz to say let's not work on a line, let's work on a ma-pa-ta. And again I was like I'm at 67% open-aided speech recognition with an implant, and so researchers are telling me they've never seen somebody with an implant do that well. So let's just be cautiously optimistic here, after about 20 hours of training. I remember driving to work one day and the line came on. When I find myself in times of trouble, mother Mary comforts me, which was the line I had been singing in my head the day before. We had been working on ta ta, point to ta, say toothpaste. And that next morning and driving to work I heard my mother, mother mary, comes to me and I had not heard to me.

Speaker 3: 36:01

I had not heard the t in there in a decade and you know there's some correlation causation there, but a day before we had been working on that individual sound and so, following following 20 hours of phoneme work, my open-aided speech recognition testing after 16 years went from 67% to 96% and I did not do anything different other than working on, I guess, some still relatively new concepts in how does your brain hear stuff?

Speaker 2: 36:34

Fantastic.

Speaker 3: 36:35

Versus. How do your ears hear stuff? So I owe a lot to a lot, you know, like I said, the right place right there. There's never been a better time to be deaf.

Speaker 2: 36:44

And you know all three of those women I mean. Angela is brilliant. She's in Australia, so you're doing courses with her online right. Carol Flexer, past president of AAA, and she is a professor emeritus at the Ohio State University. Carol and I wrote a lot of articles together. She is such a joy to work with. She is so much fun and so smart. And, of course, nina you mentioned Dr Nina Krause. She's actually a biologist and she is at Northwestern in Chicago and her book came out about two or three years ago Also a brilliant book.

Speaker 2: 37:18

Anybody who hasn't read that really should. But, matt, you've been so generous with your time. I want to totally endorse the soundtrack of Silence. I read it. I got teary every now and then. It's a very deep story. It's not just about auditory brainstem implants or neurofibromatosis. It's about living with and living through these situations and managing them probably better than most people could have. And I'm just so proud of you and so thrilled with your success. I really want to encourage people to buy the book. I just thought it was a spectacular read and it's a fun read And'll.

Speaker 3: 37:51

It's a feel-good story because you, you just are amazing well, I appreciate the bet, doug, and I will say I would not be here if I didn't know you and the work you're doing and, uh, the delfinos and the work that they are doing. You know, blaze delfino was the first person that ever said to me I uh would like to see how real ear measurement works and to be able to observe the way that his team and the best practices that they follow and the patient approach that. These are the kind of people that in my professional hearing care journey, in my patient advocacy journey, these are the people that I want to work with and learn from and serve patients alongside. So, even though I'm not a hearing care professional, I'm here because you guys are the people that I want to align with. Might be seem a little bit strong, but you guys are doing the work that I want to be a part of, so thank you for doing that.

Speaker 2: 38:47

I am so appreciative of that. I couldn't agree with you more Blaise Delfino is a powerhouse, a very energetic, enthusiastic and intelligent young man, and, yeah, he's wonderful. Matt, thank you so much for all you've done, for your advocacy and for telling your story and for writing an incredible book.

Speaker 3: 39:06

Well, thanks, Doug. I hope other people enjoy it as well.