Cochlear Implants

In Episode 8 of the Hearing Tracker Podcast, we had the pleasure of interviewing Chad Ruffin, MD, a cochlear implant surgeon in the Seattle, WA area. Dr. Ruffin wears cochlear implants himself, and in the interview, he talks about the challenges he faced while training as surgeon at one of the countries most rigorous otolaryngology residency programs. He also discusses his ongoing efforts to mentor medical students with hearing loss as they navigate the same challenges he did.

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Podcast transcript

Steve Taddei (Host): On today's episode, we are joined by Dr. Chad Ruffin and he is a board certified ear nose and throat surgeon at Proliance Surgeons. And he also conducts academic research and has worked with a startup that focuses on emerging medicine, technology, and advocacy. Dr. Chad, thank you so much for joining us. It's a pleasure to talk with you.

Ruffin: Thank you for having me, Steve.

Steve Taddei: Before we dive in, can you tell us a little bit about yourself for those who might not have heard of you before?

Ruffin: Sure. I'm a board-certified Ear, Nose and Throat surgeon. The more complicated word is otolaryngologist for people who know how to pronounce that word. I primarily focus on ears and ears surgery. Although I do see general ear, nose, and throat patients, and my passion is driven for taking care of people who have hearing loss, because I have bilateral cochlear implants myself. I was born deaf and received implants fairly late in life at the age of 21.

And a lot of people think that I am a cochlear implant geek, and want to implant the world, but that's not really the true source of my passion. People can approach the world in many different ways with hearing loss that's reflective of their experiences. But my goal really is to have people to be able to accomplish their hopes and dreams with hearing loss, whether they choose to go an all auditory route or communicate in sign language, or which is more popular, some spectrum of, uh, either. So that's really my main goal.

Steve Taddei: That's a great goal. And I think many people within hearing sciences, they would share that, that they're just trying to get people to pursue their own goals without the barriers associated with hearing loss. I know recently you actually had a, a tweet talking about you and becoming a board certified Ear, Nose, and Throat surgeon, and it actually went viral. Can you tell me about that experience and what it was like for you?

Ruffin: I'd done cochlear implant surgery many times in training, and it's a very familiar surgery for me. Doing it in our first implant program in Seattle was a really interesting experience. It's entirely different when you're doing it in training, versus when you're doing it on your own patient. You're responsible for everything about that surgery.

You are not responsible just for the technical aspects of the surgery, but you're responsible for leading someone on the entire way of their journey, molding their expectations from the get go, and managing any successes or complications that happened along the way. And that is a huge burden that I don't think most people as residents in training really experience.

And I just happened to tweet about how it hit home for me and how this was such a life goal for me to be able to participate in patients' lives in this manner. And getting my foot into the door, into our specialty, as one of the very first surgeons to be born deaf, it was very difficult. And, along the way, you realize that people with disabilities are not celebrated in medicine, and that there's a real stigma to achieving your dreams and goals in medicine.

And I kind of like pushed all that down. And I didn't really think about it over all those years of training. And it just kind of all bubbled up after that surgery was completed. And I realized how much it actually meant to me. And it was just amazing. So I had ... that's what the tweet was mostly about, and I was kind of surprised how much it resonated.

Steve Taddei: I'm sure it comes from the genuine honesty in that process. It's impressive to say the least being a surgeon. And I can't imagine the extra struggles that you had having a hearing loss, like you mentioned. So can you talk a little bit more what it was like for you going through such a professional setting?

Ruffin: Sure. So I think a lot of people think that overcoming hearing loss or being successful with hearing loss is about how good your speech perception is. And I'm speaking for people who are auditory oral. I think that's actually fairly far from the truth because I've seen physicians who sign and have no hearing be very successful in critical care settings. And this is really, really counterintuitive for most hearing people and very much so for hearing doctors. They would never be able to imagine being able to be a physician in some of the most intense, stressful situations and not have hearing and have to communicate by sign language and using an interpreter.

That is an example that really, really struck home with me and resonated. Particularly in context of my own experience, because when I was a young student, I thought that it was all about how well you hear. If you can just get the words, that's all you need to know, but it's not really true. So when you're a child and you're born deaf, your social blueprint is not as rich as a normal hearing person. And that's because your sphere of hearing only goes out a few feet from your ears. Any further away, then you miss out on incidental conversations, incidental learning. It gives you a conscious idea of what to say, but you get this visceral feeling of what's appropriate to say when to say it.

And all of that comes from having a good social blueprint and learning how to communicate at a very high level, because people with normal hearing, they don't hear individual sounds and words. Thoughts just kind of appear in their head. And they're thinking at a very high level, manipulating those thoughts, thinking about what to say. Whereas a person with hearing loss is constantly jumping from the forest view down into the weeds, trying to figure out what was said and going up and down, up and down continuously. And that's really fatiguing.

So if you combine this real-world setting, along with a relative impoverished social blueprint, it makes it really hard for people to succeed on a high professional level. The kind of communication that we demand of our physicians, of our business leaders and other people.

So when we focus solely on speech perception, and we cannot intuitively communicate this with patients in the clinical care setting, we really miss out on ability to improve lives... because we've had cochlear implants, hearing aids around for 40 years now. And in those 40 years, the socioeconomic outcomes of deaf and hard of hearing haven't changed. So clearly we need to do something different and I think that is to focus more on teaching people how to lead lives with hearing loss. I'm not saying not to focus on their speech perception.

I think another analogy is thinking about Paralympian, track runners. You see double amputees wearing these fancy carbon blades and outperforming normal runners sometimes. But people with hearing loss don't need the fanciest blade legs in the world. They just need to be able to do their daily jobs. And the same thing with people with double amputees. They just need to be able to get to the grocery store, get to their jobs, get around and do things. So I think that we really need to teach people with hearing loss how to succeed and learn to communicate better.

Steve Taddei: I think that's a very difficult thing to approach. The majority of people who would be trying to resolve issues and different disabilities would be people who don't tend to have those disabilities. So most people don't have your unique perspective. For example, I would think most people trying to help others with hearing loss have normal hearing.

And while you can have a theoretical understanding of what someone with hearing loss might need, it's always going to be a little biased based off of what you value as someone with normal hearing. So if I'm understanding you, right, you're saying there needs to be a shift regarding what is focused on or what is valued in these situations?

Ruffin: So one of your proposed questions was to talk about is one ear or two ears important. Like should people get two cochlear implants or should they get just one. Or it applies to hearing aids too. My answer to this question kind of feeds into this one is that we don't value hearing. We value sight very much. We will get injections into our eyes, very complex surgery, and we will do it on both eyes. Mostly without hesitation.

We don't do the same for hearing. We don't pay audiologists to provide counseling for patients. So we therefore don't have great research into what fuels quality of life for patients with hearing loss. We have a ton of research on the different waveforms for electrode outputs in cochlear implants... how we should fire the electrode. There's probably, you know, 10 or 20 papers for that concept versus one for quality of life. So we don't have evidence-based strategies for counseling patients and mapping this out long-term. It's actually a really complex question to model in a research environment, but I think it's something that can be done.

And one of the ways to do this is to increase the representation of people with disabilities, namely hearing loss, in medicine, both with other ENTs who have severe hearing loss and audiologists who have hearing loss as well. Academic medicine is actually pivoting towards this at the university of Michigan. You have on Dr. Philip Zazove, who is the Chair of Family Medicine, helped establish a disability center at the university of Michigan that is run, I believe by Dr. Michael McKee and Dr. Lisa Meeks. Both Dr. Zazove and Dr. McKee have hearing loss. They're absolutely phenomenal. All of these people I'm mentioning.

At Hopkins, we have Dr. Bonnielin Swenor and she is a epidemiologist who focuses on vision research. But the key thing is, with her background, she has low vision. And when she was 26, it was a life changing event for her. And she's translating her struggles into a disability center at Hopkins. And the goal of all of this is to increase the representation in healthcare and science of people with disabilities so that we can improve outcomes. And we know that by including other underrepresented minorities in medicine that it improves the patient outcomes for the cultural group that you're addressing. So the research is being done right now to show the same point for including people with disabilities. And I'm really excited to see where that goes.

Steve Taddei: All of that kind of falls in the realm of what we can do within the professional realm. What recommendations would you have for just individuals with hearing loss who are part of the hard of hearing community, what can they do? What can they do to find maybe providers who are more appropriate for them, or who understand exactly what you're talking about?

Ruffin: That's actually a really tough question because I often have other trainees in the health sciences approach me and ask me. So, how do I use a stethoscope? How do I hear better in the operating room? And invariably, what I end up doing is asking some medical questions about them getting their medical history of hearing loss. And I talk about their audiological history, what they've been fit with. And then we talk about, uh, how they advocate for themselves. And invariably, I find in that conversation that they're not appropriately fit with hearing aids. They have not had an audiologist who's performed real ear measurement. And that is something that is standard of care, but it's actually essential once you start getting into the high, more severe hearing losses.

But I think for someone, with hearing loss to find a great audiologist that they should look for audiologists who have educational material on their website, that suggest that they perform best practices like real ear. They should have audiologists demonstrating on their websites and in their clinic hearing assistive technology. And they should definitely ask patients what their goals are and they should not wait for a patient to come to them with a problem. They should be proactive and think about... put themselves in the patient's shoes.

Steve Taddei: We've talked about real ear measures a lot on this show. And again, real are measures are something that are performed to verify that the hearing aids are giving you the appropriate amount of amplification based on your hearing loss.

And on a previous podcast episode, we spoke with Dr. Nicholas Reed and he was talking about the differences between what you may need based on your hearing loss for speech intelligibility, and perceptually, what you might think sounds good. And they don't often or always line up. So that again just reiterates the importance of performing real ear measures, or as a patient, making sure that your audiologist is performing real ear measures... along with other clinical tests and appropriate counseling. Now, I believe you said you are one of three cochlear implant surgeons to also have a cochlear implant. So what was it like setting the stage for what you needed in the education system and now as a provider.

Ruffin: I did so many wrong things. Oh my gosh. Um, it was definitely by trial and error and sometimes it's not only till years later that I realize that I was just doing things wrong. I recently wrote a document for medical students, how to interview for a residency position, and while it's based on science, it also draws heavily from my experience from mentoring other students. But a lot of it is based on my own trial and error. So it was super, it was frustrating. It was isolating. And I really had no idea who to turn to for help. The self-advocacy is really, really hard when, as I said, you don't have that social blueprint. I mean, I fully admit I was probably a little bit weird as someone in my twenties.

I was self-conscious about my hearing loss. I didn't understand how it could be seen as a strength when people were telling me negative things all the time. I think one of the simplest things is in the operating room, having surgeons where a wireless microphone, or to speak up consistently, was super frustrating when you're trying to learn how to do the steps of a procedure.

And when there's such a power differential between an attending surgeon and the resident, it's a huge power differential, by the way, it's really, really hard to correct someone. And it's a technique, you know, when I was a student, I just wanted to say, would you please just talk louder? Just please. And there was no one to teach me what the appropriate way to get someone to do that very simple thing... the one thing that I needed. Years later, I have a medical student who comes to me and he has the same problem. And I said, here's what you do. You tell that surgeon, Dr. Smith, you are a great surgeon and I want to learn everything I can from you. I can't do that if I constantly have to ask you to speak up, and I won't be the best surgeon that I can be. Very, very simple, but I had no one to teach me that.

There was another episode where my program director took me aside and he says, Chad, people think that you're not interested in surgery. You don't say anything during the operation. You don't seem very engaged. And my first thought was why on earth do I drag myself out of bed at 5:00 AM to make it to the hospital at six, round on patients, stand in a sometimes 12 hour procedure... in the most complex listening environments that I can subject myself to. And in situations where lives are at stake. Why would I subject that to myself if I'm not interested in it?

Fortunately, and only because I had a background in cognitive science, I was able to explain to him when I'm in the operating room, I can't ignore noise. I have to constantly ignore it. It's like a conscious thing because of the way my implant works. I have to constantly scan the auditory scenes... think if there's something that I need to be listening to. I have to hear each individual word of what the attending surgeon is saying. And when he's teaching me or she is teaching me, I have to translate that sentence into a movement of the part of the procedure and perform it successfully. That is such a mental workload that I don't have the ability to chit chat. It's way too difficult. If I had not had that background in cognitive science, I would not have been able to articulate that.

Another example. I was walking back to the hospital with another attending surgeon. I get a call from the nurse and our patient is... needed some medication ASAP. I said, so write for XYZ. The nurse responds back, can you put that in the computer? I wanted to say, no, I really can't put it the several expletive computer. I'm not by the patient... by computer right now. But I was standing by my attending and I knew it wasn't the right thing to say, but I didn't know what to say. I didn't have any experience to draw back on. And I explained this to my attending and he said, you know, all you have to say is, please give XYZ. If you don't A, B and C will happen, and those are not good.

So I think these stories really frame what it's like to communicate with hearing loss and gives you some real insight into how you can hear everything just fine, but you're not functioning at a very high level. And a lot of the students that I mentor and see are unfortunately not going to be able to do that. It's a complex set of reasons for that, but it's something that we can fix in many cases. We just don't have the resources for it because we can't counsel patients

Steve Taddei: You've been sharing so much about your past experiences and life, and it is a great inspirational story. I'm sure you have lots of other recommendations as well. So what would you say to someone else who might be struggling on their own journey with hearing loss?

Ruffin: For some who is really struggling with hearing loss, I think it's imperative that you don't approach it in a one size fits all manner and you approach it systematically. And the way that I do it with my patients is I approach things medically. I address the medical aspects of their hearing loss, but it also see if there's any other medical condition that can make hearing loss more difficult to deal with. For example, we've talked about the mental workload with hearing loss, but if you have another chronic illness, like an autoimmune disease that at baseline creates a lot of fatigue, you need to be aware of how hearing loss is going to make that worse. And you need to understand your rights as a person with a disability and what kind of accommodations you can ask for and what you're entitled to legally.

The second aspect is getting great audiological care. We've talked about this already. You have to find a good audiologist who understands and performs best practices, who thinks ahead and proactively asks about what you need, whether something is working about it. And doesn't wait for you to indicate that there is a problem.

You also need an audiologist who is willing to refer you to cochlear implant audiologists, because this is not always the case. If you struggle to hear on the telephone with well fit hearing aids, or you're struggling to hear in general with well fit hearing aids, then you should see a cochlear implant surgeon or audiologist and get an evaluation.

The third thing is advocacy. I think this is incredibly important. Patients do better when they are plugged into advocacy groups that reflect their experience. So if you are auditory oral then Hearing Loss Association of America is great for you as an adult. Alexander Graham Bell Association for the Deaf is great for children pursuing auditory oral routes. If you have a strong cultural identity for being capital D Deaf and you sign the National Association for the Deaf will be good.

What I think is great is combining approaches. You need experience of everyone. If you're good, in my opinion, you'll probably go to one group. If you're great, you'll get advice from as many people as you can.

Steve Taddei: Self-advocacy is something that comes up again and again on the show. And I couldn't agree with you more. So you mentioned trying out hearing aids and at some point it kind of switches over and maybe you should start considering a cochlear implant. And then as you mentioned, one of the procedures would be to come speak with a cochlear implant surgeon. So what do you tell people who've gone through that exact process?

Ruffin: So there are actually two types of patients. One, exactly as you mentioned, they're interested in getting cochlear implants. The other patient is the person with hearing aids who doesn't realize how poor their hearing is and that they actually are an implant candidate. For that group of patients, I will actually refer them to a cochlear implant evaluation prior to when I think they're going to actually be a candidate to place that seed to get them thinking about this. Because in their mind, this is some huge, complex, extraordinarily life-changing surgery.

And it's really not. The surgery is fairly straightforward. It has its risks. Yes. I'm not minimizing that, but the vast majority of people do great. My goal with that group of patients is to get them thinking about it so that they don't waste a decade. And most people wait about 10 to 12 years before getting an implant. So it's really important to start them early into thinking about this, to minimize that interval.

Well, the other group of patients who are looking to get implants, I tell them about the average outcome. Right now we expect people to hear about 80% of what's said in quiet. That number will go down in noise, but as the external speech processors get better and better at noise filtration, I expect that number to go up. About half of people or just over half of people can talk on the phone with a cochlear implant. A lot of implant patients enjoy music, but that enjoyment is going to be much different than a person who had normal hearing prior.

We talk about variability with cochlear implants. I can only project, maybe predict the performance of one out of five patients. Um, our ability over the years to prognosticate how well someone's going to do with an implant based on speech perception alone is actually really, really hard. We can't do it. I tell patients, I can't tell you if you're going to be a rockstar user, if you're going to be able to talk on the phone, or if your lip reading gets better, I can't tell you which group you're going to fall into. The purpose of an implant evaluation is to find where on the spectrum, that benefit might lie and see whether a patient will benefit from implants. So like I said, we can't say what the benefit is, but we can tell patients that they will benefit. They are likely to benefit.

Steve Taddei: Dr. Chad, thank you so much for sharing all of your stories with us. I loved hearing about all of your success and what you've been doing for people with hearing loss. It really is great. The world needs more people like you. Thank you.

Ruffin: Thank you. It was really an honor to be interviewed. I am happy to have the opportunity to share my experience with you.

Steve Taddei: Yeah, it's been a pleasure. I'd also like to thank all of our listeners for tuning in. This has been the Hearing Tracker Podcast.