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BackTable / ENT / Podcast / Transcript #180
Podcast Transcript: Aural Rehabilitation After Pediatric Cochlear Implantation: Expert Insight from Audiology
with Dr. Sarah Cordingley
Any otolaryngologist or cochlear implant (CI) patient can tell you that the journey to better hearing begins in earnest after CI activation. When the patient in question is a child, what does that journey look like? In this episode of the BackTable ENT podcast, Dr. Sarah Cordingley, audiologist with Peak ENT (Provo, Utah), joins host Dr. Gopi Shah to discuss aural rehabilitation for pediatric CI patients. You can read the full transcript below and listen to this episode here on BackTable.com.
Table of Contents
(1) The Complexities of Aural Rehabilitation in ENT vs. Audiology
(2) The Role of Audiology in the Cochlear Implant Process
(3) Navigating Cochlear Implant Expectations & Family Support
(4) Early Stages of Cochlear Implant Use: Initial Activation & Fine-Tuning
(5) Recommendations for Families in the First Month Post Cochlear Implant
(6) Metrics for Cochlear Implant Success: Speech Development & Device Usage
(7) Overcoming Technology Barriers in Cochlear Implant Use
(8) Long-Term Care & Follow-Up for Cochlear Implants
(9) Improving Access to Cochlear Implant Care
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[Dr. Gopi Shah]
Hello everyone and welcome to the BackTable ENT podcast where we discuss all things ENT. We bring you the best and brightest in our field with a hope that you can take something from our show to your practice. My name is Gopi Shah. I'm a pediatric ENT and I have a very special guest today. I have Dr. Sarah Cordingley. She's practicing at Peak Pediatric ENT of Utah. She completed her degree in communicative disorders and deaf education at Utah State University. She also received a doctor of audiology degree at Utah State University.
Dr. Cordingly is a certified member of the American Speech Language Hearing Association, also known as ASHA, a fellow of the American Academy of Audiology and a member of the AG Bell Association for the Deaf and Hard of Hearing. She's here today to talk to us about aural rehab after cochlear implantation and children. Welcome to the show, Sarah. How are you?
[Dr. Sarah Cordingley]
I'm good. Thanks. How are you?
[Dr. Gopi Shah]
I'm doing great. I'm so happy to have you on because I'm so excited. You're our first audiologist who's a guest, which is a long time coming. Super happy and thankful to have you here with us today. Before we get started, can you tell our listeners a little bit about yourself and your practice?
[Dr. Sarah Cordingley]
Yes, you summed it up. I see mostly pediatric patients. Our practice as a whole does see some adults. As needed, I'll see adults only if I have to. Mostly pediatrics. We are a full service ENT audiology practice. We have speech pathologists. We do it all. Cochlear implants is just one aspect of what we do, but it's one of our favorites. We're always happy to talk about it. We have, I don't know how many ENTs at the moment. It seems like we're always getting more and more. Then we have five, almost six audiologists. We have one that's on her fourth year right now is about to graduate. She's going to stay on afterward.
[Dr. Gopi Shah]
That's exciting. Speaking about your ENT colleagues, Dr. Jordan Schramm was on our show a couple of months ago talking to us about ear tubes in children in the office. We were talking afterwards and he's telling me about his CI practice as well. I was like, I need to get the audiologist's perspective. He's like, I have the perfect person. So here we are.
[Dr. Sarah Cordingley]
Thank you, Jordan.
(1) The Complexities of Aural Rehabilitation in ENT vs. Audiology
[Dr. Gopi Shah]
I just wanted to define, what is aural rehabilitation? When you're talking to patients or even to us ENT colleagues, to be honest with you, I don't think I quite fully appreciate or understand it.
[Dr. Sarah Cordingley]
Yes. I think everybody uses it a little bit differently. Each field uses it a little bit differently. When you initially asked me to talk about aural rehab, I thought of the more defined sense of we're going to learn how to listen and we're going to like do therapy and that stuff. I think ENT tends to use that term in a much broader sense, including amplification and the therapy, like all the other parts. I think you guys use it more as like anything we can do to help a patient hear better from surgery onward, right?
[Dr. Gopi Shah]
Anything audiology service related.
[Dr. Sarah Cordingley]
Yes. Exactly, but to audiologists, we use that term for anything like deaf ed, speech therapy, that sense of things of actually sitting down and learning how to listen or any resources that we have online connectivity-wise, et cetera, like that. Anything that can help us hear better or use our devices better. Yes, I think everyone uses it a little bit differently.
[Dr. Gopi Shah]
Okay. For the working definition from the audiologist's perspective, it's understanding how to listen better. How do we help our patients listen better?
[Dr. Sarah Cordingley]
Yes.
[Dr. Gopi Shah]
Yes. Okay. It's so great because when we talk to our patients about cochlear implants, it's this assumption, unless we really go into it, that, oh, what's implants, it's a device, right? It's a light switch. Okay, it's on, but there's a lot more work involved.
[Dr. Sarah Cordingley]
Yes. A lot.
(2) The Role of Audiology in the Cochlear Implant Process
[Dr. Gopi Shah]
Yes. I'm glad you're here so you can share that perspective with us. Before we talk about sort of after the implant goes in, talk to us a little bit about the role of audiology in the initial planning stages before the surgery.
[Dr. Sarah Cordingley]
It does look different for everybody, which I think is just the theme of cochlear implants. Beforehand, if a child's older or we have an adult, most insurances are pretty specific about their criteria for an implant candidate. Usually that involves something about their thresholds, a certain severity of thresholds, which is getting less and less severe all the time. It used to be, you had to have nothing on both sides, no detectable thresholds at all.
These days it's getting more, you can have more low pitch hearing loss. You can have unilateral hearing loss, those kinds of things. The other side of it is the way that you understand speech with a device on, right? For people who can put a hearing aid on and that they do really well, cochlear implant's not for them, but if you put a hearing aid on and we still can't understand very well then a hearing aid's not going to help you very much. We need to talk about a cochlear implant. Most insurances have pretty strict criteria about what percentage correct you can get and threshold data. For young kids, for babies, infants, obviously we can't put them in a booth with a hearing aid on and have them repeat words and sentences because that's just not developmentally appropriate. The wording is usually something more like a lack of benefit or a lack of progress with auditory milestones with their devices on. We have a variety of ways that we do that. Our clinic, and I would say most pediatric clinics are very close to the early intervention groups that they work with. We communicate daily about one kid or another and how's this kid doing? Are they making progress? Do you have any parent questionnaires or other questionnaires or are you marking developmental milestones and are they falling behind in speech and language or auditory milestones?
[Dr. Gopi Shah]
Can you give us examples of auditory milestones?
[Dr. Sarah Cordingley]
Right. Does the kid turn to their name? Does the kid startle? Does the kid understand that when they hear the bathwater running, it's about time for a bath? There's all sorts of little things like that. Then of course that goes hand in hand very closely with speech and language development, right? Are they babbling? Are they making different sounds? Are those sounds being prosodic? Are they starting to sound like words? Then of course, as they get older, do they have a word at around age 12 months or do they have two words put together at around two? All of those kinds of things. We have some parent questionnaires and then we work really closely with the early intervention specialists or anybody else that happens to be working with that kid just to see what's going on.
[Dr. Gopi Shah]
With your speech and language pathologist, that's part of the early intervention, potentially PTOT and then the families.
[Dr. Sarah Cordingley]
Yes. I haven't worked much in other states, mostly in Utah, but our Utah early intervention, they have an early intervention provider from the schools for the deaf and the blind. It's specific to the hearing loss on top of the regular early intervention that any other kid might be available for. Then these ones are usually some sort of deaf educator or something like that.
(3) Navigating Cochlear Implant Expectations & Family Support
[Dr. Gopi Shah]
Once they've met criteria and there is a plan, they've gone through the different ABRs and you've done the different assessment of auditory milestones, developmental milestones. You've tried to place a hearing aids and to see, does anything help? Now we're at the point where we do meet criteria of a cochlear implant. What's the conversation like when you're talking to families in general? Then how do they vary, whether it's a failed hearing screen in an infant to a post-lingual, maybe single-sided child or post-lingual child that had a meningitis that affected his or her hearing?
[Dr. Sarah Cordingley]
Like I said, the theme of cochlear implants is that every patient is different and the expectations for what they're going to do with their implant might be really really different depending on a whole myriad of things, including how long have they had a hearing loss? How long has it been unaidable, right? Where we can put a hearing aid on, but it's not doing enough. What is their etiology? How did that happen for meningitis versus just presbycusis versus congenital GJB2, something like that.
All of those things can have an effect on how well that person will do with a cochlear implant. For example, auditory neuropathy is a real big kind of throw it in the air and see what sticks, right? The same is true for cochlear implants for those patients. We really take all of that into consideration. Another big part is family buy-in. How have they done with the hearing aids thus far? Because we can't usually implant a kid until they are 9 to 12 months, depending on their insurance. What have they done for that 9 to 12 months? Have they been really good about wearing the hearing aids? Have they followed through with their early intervention? Have they come to their appointments with us? Those kinds of things. The buy-in from those important stakeholders, that's as important, if not more important than hearing history and medical history.
We take all of that into account. If anything, we try to make it sound like it's going to be fine, but not great, right? We don't want to set expectations too high because there are so many variables and so many things that can happen that do make it so a kid doesn't hit that star performer rate. For the most part, with these kids that are born with hearing loss, congenital, and we follow a good timeline and they follow through, we do have pretty good expectations that they're going to be an aural kid if they want to, and just live their life like a hearing person. There's a lot of backthought that goes into it.
[Dr. Gopi Shah]
Yes. You mentioned family support, social support, so your social worker is part of the team early on as well to help guide and counsel. At this point, the family knows their audiologist, right?
[Dr. Sarah Cordingley]
I hope so.
[Dr. Gopi Shah]
Yes. Because at this point, they've been doing all the testings, the confirmatory, where we are now, here's the hearing aids, let's try that. At this point, this relationship has been developed, and I think you keep making a really good point. Every kid or every situation is a little bit different. Also consider the children that, might have a developmental delay or syndromic child and expectations, or what's the goal. Whether it's verbal language to sound awareness all of those conversations I'm sure come up as well.
[Dr. Sarah Cordingley]
Yes. We do have several patients that have some syndrome or additional things going on. We get that question once in a while from the parents are like, "Oh, you think the hearing loss is affecting speech?" Oh, yes, I do. In addition to whatever else you've got going on. It's always a funny conversation, but they just-- Yes, it's funny.
[Dr. Gopi Shah]
How do you manage some of the expectations or going in, do you assume, I know that there's lots of cochlear implant team meetings and it's a group decision in terms of what is the goal and to be able to set those expectations?
[Dr. Sarah Cordingley]
Yes. it is definitely a team approach for sure, especially for kids, right? For an adult, it's more you come in, you meet the ENT, you have a test with an audiologist, you get an implant. The team aspect of pediatrics, everything from early intervention and social work and speech to me, to the ENT, to other providers, OTPT, whatever that kid may need. It doesn't have to be for spoken language, but that's usually the reason that we do an implant, right?
We do have some kids where for one reason or another, they were late ID'd, they were late identified or they were late fit or they were late implanted or something. There's some reason where we're not expecting that they're going to get spoken language out of this, but that doesn't mean they don't get it. That just means that we do counsel very differently and say, they're going to get sound awareness or they're going to have access to sound in some way, but don't expect that they're going to have a conversation with you.
[Dr. Gopi Shah]
Sometimes sound awareness at least is like a signal potentially for danger or maybe, hearing family voices, mom's voice, dad voice, potentially, or, at least when I think of sound awareness, it can mean so many different things and the value of that varies depending on the situation and the child as well. It is an important consideration that I don't think I appreciated especially early on in my practice. Because the goal, I was always like verbal, right?
[Dr. Sarah Cordingley]
Yes. That's great if you can do it.
(4) Early Stages of Cochlear Implant Use: Initial Activation & Fine-Tuning
[Dr. Gopi Shah]
Yes. That's not always the main goal or the value for that situation sometimes. Now let's say the child is gone, they've had their cochlear implants, I feel like, we're like, okay, we see them, we do the wound check couple weeks later, we're like okay, it looks good, can go to audiology and start wearing the implant. We'll be like, okay, they're cleared. What happens next?
[Dr. Sarah Cordingley]
They usually come back to us.
[Dr. Gopi Shah]
We just like send them to you guys.
[Dr. Sarah Cordingley]
Yes. You're like, congrats. Here you go.
[Dr. Gopi Shah]
This is like where the real work begins or part two of a journey.
[Dr. Sarah Cordingley]
Which is so funny because I think in the audiology world, we think the real work begins with the actual aural rehabilitation. We're like, we just turn the device on, then you guys do all the work. Cochlear implants, so many people try to equate them to hearing aids and giving sound in the same way, but they're just not even close. They're just a totally different animal. Hearing aids, we just turn it up where we need to. They have some bells whistles, but basically we're making it louder, but it's still an acoustic sound.
We've now taken it to electric sound and we are stimulating that nerve directly with electricity. We have to figure out how much electricity and we have to figure out how much on each electrode, right? We have to figure out what's the softest, what's the least amount of electricity that we can deliver, but that person can just barely detect versus how much electricity is too much and it's painful.
We want to get our programming somewhere in between there so that person has access to soft incoming speech and it sounds soft, but still audible. Then they have access to loud speech, but it's still comfortable. It's not painful. It's not too much. Sometimes if we program it too much, you can actually see a facial twitch because that facial nerve is right there too. We might be stimulating that. That means too much.
[Dr. Gopi Shah]
Turn it down.
[Dr. Sarah Cordingley]
Yes. Sometimes people say that they can feel it. Even if you can't see it from the outside, they can just feel their face moving so we turn it down. That is done on an electrode-per-electrode basis. We are trying to make it so that it's comfortable. Each electrode is responsible for a different frequency pitch-wise. We have to make sure that they have access to soft low tones and loud high tones, everything in the middle.
For kids, obviously we can't get as much information from them as we can for an adult. An adult, we have ways of saying, is this loud? Is this soft? Give us a scale. Is this detectable? For a kid, we sometimes use the same games that we do for regular diagnostics, VRA and CPA, visual reinforcement, audiometry, and conditioned play audiometry for like just detectable sounds. They're good at that usually by that point, because we've been doing it for a while. We can use those techniques to create a program, to create a map.
When we first turn it on, that initial activation, the first time that we say go, we turn it down a lot. If you turn it up where you want it to be, where an ideal program would be, it's going to be way too loud. You're going to freak that kid out and he's never going to come back to your office. It's just going to be way too loud and scary. We turn it way down, even down really quiet. Our initial reaction for the most part is crying for kids. Not because it's too loud, not because it's bad, not because we've done something wrong, but because it's new and it's different. It probably scared them a little bit.
We warn the parents of that a hundred times before we do it because there are parents who think that, oh my gosh, they traumatized my kid and this is never going to go well. It's just the way it is. If you just sit with them for a minute, they realize it's not bad. It's not scary. It's just new and they're okay. Then you slowly turn it up until you get that point where they're like, oh, that's too much. Then you find that and you come back down.
[Dr. Gopi Shah]
You do that for every electrode?
[Dr. Sarah Cordingley]
Not necessarily. How many total electrodes usually are there? It depends on the manufacturer. Cochlear has the most, VB is in the middle, MED-EL has the fewest. That doesn't mean that Cochlear is the best because they have the most electrodes. Each company uses their electrodes a little bit differently. You still have access to all the pitches, all of the volume, all of that. Even when we have 22 electrodes, even for adults, we're not measuring every electrode. We're measuring maybe half of them at most. Then we're interpolating between them.
What we're measuring is more of the VRA or the CPA. Then when we turn it on, we just go live, everything is on. Then that's where we start quiet and go louder until we can see it on their face that it's too loud, or they can tell us it's too loud, or they start crying again, things like that. It's a lot of behavioral observation at that point. Usually, we can get to a good program within the first few weeks. That's the other thing. Things change a lot initially, programming-wise.
You might get a really good program on day one, but then as scar tissue grows or as that electrode seats in there better, or I don't know, levels of hormones change, who knows? Things can change a little bit. That's why we see patients a little more often at the beginning than we do over time because it becomes more stable over time.
[Dr. Gopi Shah]
Is it like a weekly, every two weeks? How often do that when you first turn on the implant?
[Dr. Sarah Cordingley]
We used to do it a lot more frequently. It used to be every week for like a month. Then you do a one month and then a three month and then six month for a while, and then annual. I think as a field of audiology, we are finding we don't need to be seeing them that often. We're starting to go more of like, we see them initial activation and then we see them like a month later and then maybe a month or two after that. Then we pretty quickly go to 6 and 12-month follow-ups.
We have a rep from one of the companies that always says, don't move the furniture in the room on a blind person. It's the equivalent of, don't change the deaf person's program if possible. If we're just tweaking, tweaking, then that person's brain can't get used to it. That success, that understanding, that speech isn't going to come along as fast. We find if we actually just leave it alone more, which I think as audiologists, we have a really hard time doing. We like to manage things a lot and so seeing them last is hard, but I think it's the right choice. We're slowly making our way that way.
(5) Recommendations for Families in the First Month Post Cochlear Implant
[Dr. Gopi Shah]
What are you telling the families and the kids to do that first month? We talk a lot about the need for family support and really using the device. Tell me the recommendations, what is the expectation? Are we keeping logs, like what's happening at home?
[Dr. Sarah Cordingley]
Yes. Every manufacturer has data logging abilities. The nice thing for cochlear implants is you can see how much the device is turned on versus how much is it connected to their head. It knows when it has made a connection to that antenna inside. I don't care if the device is on, sitting on the desk. I care if it's on your head.
When you first do an activation, the patient gets this giant backpack full of stuff. It is way overwhelming. At our practice, at least we go over the bare minimum. Initially we say, here's your batteries and how to charge them. Here's how to put this thing on your head. If you can change programs of volume in the way that we have counseled you to, that's a cherry on top. Connectivity, microphones, all of that extra stuff, it's extra. Don't worry about it. You have enough change in your life right now with just wearing this thing every day and managing it. That's the goal.
We do tell people that we would like them to wear their implant 10 hours a day at least. Something closer to 15 would be ideal. Obviously, that's a little easier said than done for kids who are still napping a lot, who are two years old and they're terrors and they're just pulling it off their head every second. That mom needs a break once in a while. If we can get even three or four hours after that first chunk of time, that's amazing. I try and give the parents a little bit of grace and say, good job. I know that's really hard. If we can double that this next chunk, that would be ideal. Then if you double it again at the end, eventually you'll get up to that full-time use. At first it's really hard. It's really hard.
[Dr. Gopi Shah]
I know they function as two different things, but when the infant has, or the child has a hearing aid trial, and realizing it's not doing anything from them, but does the fact that maybe a child or an infant can keep it on for a long, predict, successful wear of the implant in the future, is it worth like, well, just keep wearing them just so you get used to something on your ears?
[Dr. Sarah Cordingley]
Yes and no. I would say it depends on the kid. I've seen a lot of kids who will reject their hearing aids. It never goes well. It's awful. It's hard the whole time because they're not getting anything from it. It's like trying to put a hat on. They're like, I hate this hat. I'm going to take it off. Initially, it might be like that with the cochlear implant, but for some kids, once they realize that they're getting something there, there's a reason that we're putting it on, then they tend to leave it alone more.
There are still, for every kid, those times that they're going to just rip it off their head. The terrible twos, right? They're just going to rip it off. It's just going to happen. We encourage that parent to do their best and that this is a hump and they will get over the hump and then it will get better, but it can take some time. It can be really, really frustrating for a while. They're going to want to pull their hair out. I warn them of that. It's going to suck sometimes, but do your best to get over that hump.
I do encourage my patients to use the hearing aids for as long as they can, right up until the day of surgery. Because if they're that kid that like the practice of putting something on every day is part of that habit and they can continue that with the implant later, great. The other hard part is that they're usually off the air for a couple of weeks after surgery anyway so there goes that habit out the window. It depends on the kid.
[Dr. Gopi Shah]
What kinds of questions, phone calls, epic inbox messages are you guys getting in that first one to three months?
[Dr. Sarah Cordingley]
Lots of logistical questions. How do I put the battery on? I forgot. How do I change the programs? I forgot. A lot of connectivity questions. We are lucky enough at our clinic to have a couple of audiology assistants and they could teach you, like they are way better at it than I am. They know everything about every iPhone, about every Android, about every connectivity option. I would say, at least, especially for adults, that's our number one question is connectivity of some kind.
We do get questions about magnet strength because that can change a little bit in there initially, they might have some swelling at their magnet site initially. Then as they wear that magnet, it gets less and less. They need a weaker magnet. We answer questions about that. Sometimes it's hard to predict how quickly a patient will get used to the sound and they'll want more sound quicker than we think. We'll get a call a week or two later and they don't have another appointment for another week. They're like, it's just really quiet and I just really want more volume. We'll do what we can to get them in sooner and make some adjustments. Mostly it's the logistical connectivity questions. For sure.
[Dr. Gopi Shah]
Are you able to program any of this to help them remotely? Is there anything you can do from the audiology clinic that can remotely adjust certain electrode based on what may be the family is seeing of the child or what an older kid might be telling you?
[Dr. Sarah Cordingley]
Yes. Every manufacturer is working on that. Advanced Bionics is up and running with that. You can map, you can do full mapping, everything that you can do in the office, you can do online. I think they had an advantage because they are owned by the same company as Phonak Hearing Aids and Phonak Hearing Aids already had that thing. They just plopped it over to the cochlear implant side.
Cochlear has like a remote check thing that they do. It's almost like a little quiz that you give them, how's your magnet site? Repeat these words. How can you hear with it? It depends on what you want your patient to do, but you can't do any programming that way. They do have remote programming capabilities, but I think right now it's still, you have to send the patient a laptop and they have to log in that way. It's very cumbersome and not for somebody who's not tech-savvy.
Personally, in our clinic, we've done a little bit of remote programming. We just haven't done the research as far as reimbursement goes and that logistical stuff. Plus we're very busy. We don't have time to change our practice. We're doing other stuff to change our practice, that's just at the moment, not a priority.
[Dr. Gopi Shah]
Is there a role of virtual visits as part of aural rehabilitation? Are you ever seeing these patients once they get that six-month visit? Maybe at that point, we're wearing it for 10 hours a day. We see some improvement in speech.
[Dr. Sarah Cordingley]
I think that is the point of that remote check from Cochlear. Instead of having them come in for a mapping, for them to come in and say, yes, I'm doing great. You can ask them on that remote check. How are you doing? They're saying, I'm doing great. Great. We'll see in six months. Instead of wasting that appointment, I think there's definitely a place for that. I do think that ever since COVID, all of the telehealth stuff has really blossomed a lot.
I think audiology has some unique blockades for telehealth. If you as an ENT wanted to do a telehealth appointment, as long as they have a webcam, you can do pretty good. For us, I can't connect your hearing aid or your cochlear implant to my computer when you're at home. Now I can, at least with advanced bionics. It's definitely coming. It's definitely in the pipeline to make that easier. It's still a lot of that reimbursement question and logistical question of how do we schedule that? Do we take time? Do we do that with our assistants? Do we hire somebody else to do that?
(6) Metrics for Cochlear Implant Success: Speech Development & Device Usage
[Dr. Gopi Shah]
How do you fit that into the practice or the system once there's these new ways? In terms of metrics, in terms of "successful CI use," how long does the child wear it for with it physically on and the device turned on? Speech, how are we developing in terms of speech? What other metrics do you take into consideration when you're like, ah, we had a good outcome here. This is what our goal is.
[Dr. Sarah Cordingley]
The ideal would be that they can repeat words at near 100%, 90 plus or sentences. That's not the realistic expectation for everybody. Given all the things we talked about before, the metrics do change based on age for sure. Obviously, like I said, when they're infants, they're not going to repeat words for you. If you can get into a point to their nose, you're doing really well.
Again, we're just in really good contact with the early intervention team and how are they doing? Are they making progress? Are we missing something? They'll sometimes pick up on stuff that's like, they aren't telling the difference between these two words and it's an F versus an S. Can you look at that frequency and see if there's something we can change there? Really specific stuff like that, or this kid's not hearing anything at all. Something's wrong. Everything in between.
In the clinic, when they're really young, we're mostly just confirming good thresholds, aided thresholds. Put them in the booth with the cochlear implant on and do our diagnostic testing with VRA or CPA, how quiet can we make the sound? They still react to it. As long as they've got good access to sound, our job at that point is sort of done, right? We got to get as good of a program as we can on that kid. If they've got good thresholds, we've done that. Then we send it to early intervention and those people to take that good program and get that kid to learn language from it.
[Dr. Gopi Shah]
How are they applying it? Do we see it in an application?
[Dr. Sarah Cordingley]
As that kid gets older, we can do more in the clinic. Repeat words, repeat sentences, all sorts of different speech testing to see if they're making progress.
[Dr. Gopi Shah]
When you test the kids or the infants using VRA or CPA, is it the same four frequencies that we normally test for? Are you also including high frequency or is it just 500, 1,000, or are we going higher?
[Dr. Sarah Cordingley]
Our goal for a little, little, like 12 to 18 months, if we can get 500, 1,000, 2,000, and 4,000 on each side, we're doing good. That's a good day. We're happy for that. Sometimes all we get is like a speech threshold and 2,000 Hertz. Then we come back on another day and--
[Dr. Gopi Shah]
It's like the ear fluid babies.
[Dr. Sarah Cordingley]
Yes.
[Dr. Gopi Shah]
It's like the ear tube kid evaluation.
[Dr. Sarah Cordingley]
Yes, you're just thankful for it and you move on. Sometimes for those kids, it does take a few appointments to get what we consider a full audio 500, 1,000, 2,000, 4,000. For older kids and adults, we do include 250 and 6,000 Hertz. Cochlear implants aren't very good up at 8,000 Hertz, so we don't usually test that one, but we will try and get six.
[Dr. Gopi Shah]
The timeline, we mentioned like one month, three months, six months, a year. What is the expectation for like aural rehabilitation? Does it take a full year? Is this something like, nah, you're going to start using it well if you do this for in three months? Is it just, what's the range? I guess maybe a better question.
[Dr. Sarah Cordingley]
Yes, we get that question all the time from patients, right? When am I going to get a 100% correct? I don't know, dude, that's a good question. Like I said, there's that theme again of like everybody's different and they're hearing history and their buy-in and their wear time and their dedication to any aural rehab plays a huge part. I would say that as long as you're wearing it really well, 10-plus hours a day, you're going to make some good progress.
I would say, we can safely tell patients, at least that typical adult patient. Within a few months, you're going to be doing much better than you did with your hearing aid. I'm not going to tell you you're going to get a 100% correct on my word test, but you'll be doing better. It's still a funny relationship that the patient sometimes has with their cochlear implant.
Sometimes you can get that patient that comes in and they get 96, a 100% percent, something like that, and they hate it. It's awful. It's the worst thing they've ever done and they regret it, or you get that like long-term deafened patient who knows they're not going to get speech out of it, but they are thrilled that they have some thresholds. It's the best decision they ever made in their life. It's really variety of what does success mean to you? What does success mean to me for you? It varies widely and we do our best to counsel, but it's going to sound different.
It's not going to sound like your hearing aid. It's not going to sound like it did when you were 20. It's going to sound different, but sometimes it's just still weird.
[Dr. Gopi Shah]
How often do patients who have their implants on still, get benefit from closed caption or lip reading? How often do you advise or recommend some of those things to help or ASL or visual language to help communicate?
[Dr. Sarah Cordingley]
Yes, a lot, a lot. I would say the patients who got their implant when they were really young and now they're 20 or 30, they do pretty well and they don't use a lot of closed captioning or speech to text on their phone or anything like that. I would say for the vast majority of adult patients, those things are still true. Those things still help a lot.
The other thing that really helps is streaming. Most manufacturers have a way to connect the TV to your implants with streams directly or phones or whatever device you're trying to use. As the audiologist, you can even turn off the environmental mics so that they're not hearing outside noise. They're only getting that streaming. For the, 75 year old guy that really likes to sit and watch the news all day, that's life changing for him. Connectivity to that TV is really important. For our littles, it depends on the situation. Are you working on aural rehab at the time or are you trying to function, right? If you're in school, I want you to use every resource at your disposal. You need a sign language interpreter? Do it. You need a note taker? Do it. You need a remote microphone? Do it. Whatever, and I'm not a school audiologist, so I don't do all of that. If you need those supports, then grea, but if you're in speech therapy and you're working on that, like you got to make it hard. You got to do that or you're never going to improve. Hopefully the improving that in those therapy sessions can generalize over to other things. We still use a lot of additional help and resources.
(7) Overcoming Technology Barriers in Cochlear Implant Use
[Dr. Gopi Shah]
I wanted to ask you a little bit about technology again, you mentioned streaming and being able to turn off environmental noise, all these cool things that you can do. Is it ever too complicated for the family or the older patient to understand how to use all that stuff and, how do you navigate that?
[Dr. Sarah Cordingley]
Yes, it's very complicated. I would say even as an audiologist, most audiologists are really comfortable with maybe one or two hearing aid brands, maybe three if they're savvy, and then like maybe a couple of cochlear implant brands, maybe all three of, again, if they're savvy. I think most audiologists will also say that it's that remote connectivity stuff that they always have to like, I've got to watch a YouTube video on how to connect this again because it's that thing we don't do as often.
Definitely for the older patients, there's one recently that I can think of where just learning how to put the battery on took us like half an hour. I have a student with me, I was like, we're putting everything else in the backpack. We're not even going to bring it out. We're not even going to show him. We just got to get it on his head. That's all.
[Dr. Gopi Shah]
I think of my husband's Nana, his grandmother, her hearing aids have been so tough for her. I think a lot of it is not just the fine motor of putting the battery in, but also just understanding how to make the adjustments depending on the environment that she's in and it's all on her phone. It's something that's not necessarily that intuitive. Then it becomes very frustrating for her. Then she doesn't want to wear them. It's the same thing I would imagine for an implant. I imagine as a parent, like for me, I'm not the most tech savvy person at all. My husband's much more technically savvy.
[Dr. Sarah Cordingley]
Yes. You run into that full spectrum of tech savvy parent. Some parents, like by the time they get there for the activation, they're like, I've got an account with Cochlear and I downloaded the app and we're all connected and ready to go. I'm like, okay, cool. Some parents are like, I don't want to touch that today. I can't handle it. I don't know how to do it.
It is very user friendly. They try and make all of the customer stuff very easy to use. For the most part it is. I would say that parents of kids tend to do a lot better than our adult patients. A lot of our adult patients though, do have, just like you said, their son or their daughter or their neighbor or somebody comes and helps them with their phone. Because beyond making a phone call on that thing, they're not doing much.
Even then for a cochlear implant user, making a phone call on any phone is hard. Yes, it's hard. I will to say that each manufacturer has really nice customer service. If I'm not available or our assistants aren't available or whatever, they can get in contact with those manufacturers and they can walk them through pairing stuff and using and streaming and aural rehab even, all sorts of things. The manufacturers have resources for everything.
(8) Long-Term Care & Follow-Up for Cochlear Implants
[Dr. Gopi Shah]
Let's say now we've been a year and a half to two years out and the child is wearing the cochlear implant. We're seeing progress and speech and engagement and communication. How often do them after? What does long-term follow-up look like DCM? Every two years? Every year? How often do you have to make adjustments to like, do you have to make adjustments again to programming?
[Dr. Sarah Cordingley]
The longer they have it, the more stable it is as a general rule. We follow them every six months for a few years at least, and then try and go to annual. Some patients will go like two or three years before we see them again and they're doing great. They're doing fine. They get an upgrade and they need us to program it or show them how to use it or whatever. It's definitely getting less and less.
I think it used to be you'd see them every three months for years. We're finding we don't need to do that much and that they're doing pretty well and things are pretty stable. We do see changes anytime there are hormone changes-
[Dr. Gopi Shah]
Like puberty.
[Dr. Sarah Cordingley]
-puberty, pregnancy, menopause, those kinds of things. Yes. Medications, certain medications can do really weird things. Sometimes like we had one kid that bonked just right and hurt that internal. Things like that happen. For the most part, it's been sailing after a couple of years.
[Dr. Gopi Shah]
What major complications do you guys see five to 10 years out?
[Dr. Sarah Cordingley]
Very few.
[Dr. Gopi Shah]
I know on our side, every once in a while, you might get such a significant infection where every once in a while it has to be removed and re-implanted and things like that. That's not common, thankfully.
[Dr. Sarah Cordingley]
It's not. I've been doing this for almost 10 years now and I can think of like a small handful of patients that we've had to re-implant for one reason or another. Advanced Bionics did have their recall in the last couple of years or so. We had a good chunk in our clinic that had to get re-implanted for that. That's an out-of-the-norm thing.
Outside of that, I can think of maybe three or four that our clinic has had to re-implant and anything from there was one patient just sort of not doing well. She just wasn't getting good thresholds. She wasn't getting good speech. She just, no matter what we did, we brought in the rep, we reprogrammed and no matter what, it just wasn't good. We re-implanted her and she's doing great. Like I said, I had that one kid that bonked just right on the corner of a table, and hurt the antenna on the inside. Had to get re-implanted. Once in a blue moon, but for the most part, there's nothing.
[Dr. Gopi Shah]
When you have to get re-implanted, like for those kids, was there another initial period until they got used to the new implant of aural rehab? They slide right back in pretty easy?
[Dr. Sarah Cordingley]
They slide much faster. Yes. It's like maybe like days to weeks instead of weeks to months. It depends on their age too, and like how long they were off the air, how long they had a poor program, or there's a lot of things that can make it so it's easier or harder for the re-implant.
[Dr. Gopi Shah]
Then do we know what the life span is on a cochlear implant? Because now we have babies with implants or infants, adults who've gotten implants 20 years ago. Do we know the life expectancy or the technology so dated now, or does that stuff happen?
[Dr. Sarah Cordingley]
Not much. I've been told that cochlear implants were designed for an 80-year lifespan, but like cochlear implants haven't been around for 80 years. We don't know that that's the lifespan. There have been a few cases, like the really, really old implants. Really early on, Cochlear America's implants are still in heads and still being used. They're 20, 30 years old now, and still functional.
There was one of the earlier ones from Advanced Bionics stopped being supported by Advanced Bionics. Those people had to get a re-implant if they wanted to ever upgrade their external. Advanced Bionics wasn't making their external devices backwards compatible with the oldest implants, which is unfortunate. Other than that, yes, we don't re-implant a whole lot. The technology changes generally happen on the outside.
(9) Improving Access to Cochlear Implant Care
[Dr. Gopi Shah]
Then in terms of providing aural rehab and providing that care, are there ways that we can provide more equitable care when it comes to access?
[Dr. Sarah Cordingley]
Yes. This is a big question. We could talk about that [crosstalk]
[Dr. Gopi Shah]
This is a whole two-hour part one, part two.
[Dr. Sarah Cordingley]
Yes.
[Dr. Gopi Shah]
But I just thought I'd slide it in the last two minutes.
[Dr. Sarah Cordingley]
Yes. Easy. Easy. I would say, generally speaking, there are two major obstacles. One would be physical access, that patient lives in the boondocks in the middle of nowhere, and they're not close to anything, us, aural rehab, anything. That telehealth stuff that we were talking about, that's huge for them. Instead of making the five or six-hour drive to us for an hour-long mapping appointment, we're probably going to be able to do it online at some point. Certainly telehealth, speech therapy kinds of stuff is already definitely happening that way.
I would say that the other big obstacle is financial. Most insurances cover cochlear implants pretty well, as long as you have insurance, which is another thing, but every cochlear implant patient pretty much has to get hearing aids beforehand, at least for a trial, even for a three-month trial or something like that. A majority of insurances, even if they cover cochlear implants and they require a hearing aid trial beforehand, they don't pay for the hearing aid.
We have to find a way to help that family because a lot of families are like, well, then I guess we're not doing it because we don't have $1,500. We don't have $2,000, whatever it may be. For me, that is a huge access issue. There are lots of grants out there for hearing aids that we use on a daily, but there's a big part of me that just feels like ethically and morally, those insurance companies should be the ones covering the hearing aids, especially if they're requiring a trial before a cochlear implant. That's just the silliest thing you've ever heard in your life.
For me to be the one to diagnose a kid, right? A baby comes in, they didn't pass their newborn hearing screening, and they come in and I say, I'm sorry, you have significant hearing loss on both sides. You're in this cochlear implant territory, but first you're going to have to spend several thousand dollars on hearing aids that aren't going to do anything for you. That we just have to check the box with. That's devastating, on top of an already devastating thing for parents. It's just silly.
There was a group of us several years ago that tried to get together, at least in Utah, and pass legislation that required hearing aid coverage, at least for kids. We were laughed at and sworn out of rooms and it's just not going to happen. There's a bill going through right now, a federal bill, Ali's Act, that is looking at mandating coverage federally for bone conduction devices and cochlear implants. Hearing aids are not part of that act, which I support that act a hundred percent. Don't get me wrong. I'd love that, but--
[Dr. Gopi Shah]
There's still a big barrier.
[Dr. Sarah Cordingley]
There's a big missing hole, yes. There's several states, I think 25 or 26 right now that do have legislation in place mandating coverage for hearing aids, but there's half the country still that doesn't. There's still lots of loopholes even in those states. It's a big project and I'm sure that's true for everything in the medical field.
[Dr. Gopi Shah]
Yes. No, but the hearing aid thing, I'm glad you mentioned it and bring it out because it's something that it's easy to be like, all right, well, you have the aid and not even think about what hurdle that is, and can be and what that might mean, which potentially, like you said, maybe like, well, I guess we're not doing it.
[Dr. Sarah Cordingley]
Yes. We never let that be the case. Let that be said, we always find a way one way or another to make it happen.
[Dr. Gopi Shah]
Yes. Sarah, as we start to wrap it up, any final pearls you want to leave us with about aural rehabilitation or something you're like, man, I wish our ENT colleagues, like this is the one thing there's like, come on guys, this is the one thing what's important for us. Because I feel like, again, we, aural rehab, starting with the definition to, hey, there you go, audiology, the implants in, now what?
[Dr. Sarah Cordingley]
I would just say when I was going to grad school, I think this is a pretty common sentiment. There are a lot of people who say don't work for ENTs because there's a lot of ENTs out there that are lovely and amazing and they work well as a team, but there's a lot that don't. There's a lot that look at audiologists as techs, as underlings of some kind, and they don't trust us. That's really hard to work in a place like that.
Like you mentioned, you talked to Dr. Schramm, Jordan Schramm earlier, he and I work really closely together. He trusts me. I trust him. We are on the same page about a lot of things and he's a great guy to work with. I've been with ENTs who just don't trust us. That's not fair. We are experts in our field and we're good at what we do, generally speaking. Whether it's, I don't think this person needs a cochlear implant, or I do think this person needs a cochlear implant, or this person's not doing enough aural rehab. I could really use your support in mentioning that in your appointment. Those kinds of things, just play ball with us.
[Dr. Gopi Shah]
Yes, I think the partnership is huge. I go probably in clinic sessions at least once or twice to walk over to audiology, just to ask a basic question about whatever's on the audiogram to whether or not we think this child needs an ABR, especially that to me where we want this information, it requires sedation, like what's our plan here? I think that dialogue and playing ball is so important and leaning on each other, especially in valuing what you guys do, the information that you bring, and then what you're able to do in partnership after, whether it's hearing aids, cochlear implants, whatever. it's huge. Boning hearing devices, like it couldn't happen, I don't think, without each other.
[Dr. Sarah Cordingley]
Yes. I think when the partnership works well,-
[Dr. Gopi Shah]
It works well.
[Dr. Sarah Cordingley]
It's amazing.
[Dr. Gopi Shah]
It's amazing.
[Dr. Sarah Cordingley]
It's so good.
[Dr. Gopi Shah]
Yes. It makes a huge difference, whether it's something as simple as managing ear fluid, legit to the CI, it's huge. Families can tell they appreciate it too, because when you have a team, it makes a difference. Also the simple question of, hey, how's aural rehab going? I think it's also very important. It's something that I would tell you probably, it doesn't always come to my head or I think about, so it's always good to have that as, okay, this is one of the kids that just got an implant. How's it going? Are you wearing them? Don't forget those simple questions.
[Dr. Sarah Cordingley]
I will say too, aural rehab, when you asked about definition of aural rehab, even within our definition of aural rehab, there's sort of two sides to it. One is that like formal sit down with a therapist, let's work on the letter S today or whatever it is. Then there's also the stuff that this family can do at home that really makes a difference. Streaming podcasts, streaming audiobooks, streaming music, streaming YouTube, stream whatever you want as much as you want because that is huge. That's the best way to isolate that ear.
This is especially true for those SSD cases. There was an article that just came out that said streaming to that implant is almost more important than just wear time, which is really impressive. Like if you've been in the clinic for any amount of time and you've seen those few patients who really do stream and they really do take your advice to heart and they do it and they just skyrocket. Then those people who, oh yes, I'll do it. I'll do it. Then they never do. They just sort of sit and they make some progress, but it's slow. I think there are two sides to it. Each manufacturer has a ton of stuff online, on apps, on stuff that you don't have to do with a therapist. I want to say that too, that there's sort of two sides to it as well.
[Dr. Gopi Shah]
No, I think that's great. Sarah, thank you so much. If any of our listeners wanted to reach out to you, are you on any social media?
[Dr. Sarah Cordingley]
Yes. Sarah Cordingley, I'm on Facebook, Instagram. You can also email me scordingley@ptnt.com if you have any questions.
[Dr. Gopi Shah]
Great. Thank you so much. I learned a ton.
Podcast Contributors
Dr. Sarah Cordingley
Dr. Sarah Cordingley, Aud, CCC-A is an audiology specialist practicing in Provo, Utah.
Dr. Gopi Shah
Dr. Gopi Shah is a pediatric otolaryngologist and the co-host of BackTable ENT.
Cite This Podcast
BackTable, LLC (Producer). (2024, July 9). Ep. 180 – Aural Rehabilitation After Pediatric Cochlear Implantation: Expert Insight from Audiology [Audio podcast]. Retrieved from https://www.backtable.com
Disclaimer: The Materials available on BackTable.com are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable.
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