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BackTable / ENT / Article
Navigating the Cochlear Implant Process: A Guide for Parents & Practitioners
Iman Iqbal • Updated Nov 28, 2024 • 31 hits
Cochlear implantation offers life-changing opportunities for individuals with significant hearing loss, providing access to sound when hearing aids are insufficient. Audiologists play a pivotal role in this process, guiding candidates and families through evaluation, activation, and long-term follow-up. With recent advancements expanding candidacy criteria to include residual and unilateral hearing loss, the process now accommodates a broader range of needs.
However, the success of cochlear implants still hinges on personalized programming, family involvement, and overcoming common challenges like initial resistance to device use, especially in children. This article provides an in-depth overview of the intricate journey of cochlear implantation, from candidacy to activation and ongoing care, while highlighting the evolving role of remote programming and telehealth in enhancing accessibility.
This article features excerpts from the BackTable ENT Podcast with audiologist Dr. Sarah Cordingley. You can listen to the full podcast below.
The BackTable ENT Brief
• Cochlear implantation provides critical benefits for individuals with severe hearing loss, especially when hearing aids are inadequate.
• Audiologists are essential in the pre-surgical process, assessing candidacy based on factors like age, hearing loss type, and speech understanding.
• Eligibility for cochlear implants has expanded, now including individuals with residual low-frequency or unilateral hearing loss.
• For infants and young children, auditory and speech milestones are used alongside parental input and observational reports to evaluate progress.
• Counseling focuses on setting realistic expectations, emphasizing family support, and tailoring goals for children with developmental delays.
• Initial activation involves setting stimulation levels conservatively, with gradual adjustments to ensure comfort and minimize sensory overload. Device programming involves techniques like visual reinforcement audiometry (VRA) and conditioned play audiometry (CPA) for children.
• Frequent early follow-ups allow fine-tuning of the device, addressing physiological changes and optimizing electrode function. Regular intervals are adopted as stability improves.
• Families are guided to prioritize consistent device use, overcome resistance in young children, and navigate logistical issues like battery management and connectivity.
• Emerging technologies enable remote adjustments and monitoring, although barriers such as logistics, reimbursement, and patient tech-savviness persist.
Table of Contents
(1) Audiology's Role in Cochlear Implant Planning
(2) Counseling Families & Managing Expectations on Cochlear Implant Outcomes in Children
(3) Initial Activation & Fine-Tuning Following Cochlear Implantation
(4) Overcoming Early Challenges in Cochlear Implants
Audiology's Role in Cochlear Implant Planning
The planning and evaluation process for cochlear implantation requires a personalized approach, tailored to the unique needs of each patient. Audiologists play a crucial role in the pre-surgical stage, ensuring that candidates meet the necessary criteria, which vary based on factors like age, type of hearing loss, and insurance requirements. Traditionally, cochlear implants were only an option for individuals with profound bilateral hearing loss, but advancements have expanded eligibility to include those with residual low-frequency hearing or unilateral hearing loss. The determination often hinges on a candidate’s ability to understand speech with hearing aids; if understanding remains poor despite hearing aid use, cochlear implantation becomes a consideration.
For infants and young children who cannot participate in traditional hearing tests or speech assessments, the evaluation focuses on auditory and speech development milestones. Audiologists collaborate closely with early intervention teams, using parent questionnaires and observational reports to assess progress. Key auditory milestones include behaviors such as responding to their name, reacting to environmental sounds like running water, and associating sounds with routine activities. These are coupled with speech milestones, such as babbling, forming sounds that mimic speech prosody, and reaching age-appropriate linguistic benchmarks like saying their first word around 12 months or forming two-word phrases by two years.
[Dr. Gopi Shah]
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.
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Counseling Families & Managing Expectations on Cochlear Implant Outcomes in Children
The decision to proceed with cochlear implantation involves detailed discussions with families, tailored to each individual’s unique medical, developmental, and social context. Outcomes with cochlear implants depend on various factors, including the duration of hearing loss, its cause, and whether it is treatable with hearing aids. Cases like auditory neuropathy or hearing loss due to meningitis may present unpredictable outcomes. Family commitment to early interventions, consistent hearing aid use, and appointments is a critical predictor of success, often more significant than the medical history itself.
Counseling focuses on managing expectations realistically while emphasizing the importance of family involvement and teamwork among providers. For children with congenital hearing loss, timely intervention and strong family support often lead to outcomes where children can develop verbal communication skills and function like hearing individuals. In cases of developmental delays or syndromic conditions, the goals may shift towards achieving sound awareness rather than spoken language, tailoring expectations to the child's specific needs. Even for children who may not develop verbal skills, sound awareness has value, such as recognizing environmental cues, family voices, or signals of danger. The cochlear implant team takes a holistic approach, integrating social work, audiology, early intervention, and other supportive therapies to ensure that each child and family receives individualized care and counseling.
[Dr. Sarah Cordingley]
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.
…
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.
Initial Activation & Fine-Tuning Following Cochlear Implantation
Following cochlear implantation and post-operative healing, the audiological process focuses on device activation and fine-tuning, which is critical to ensuring both the patient’s comfort and optimal device performance. Cochlear implants differ significantly from hearing aids as they convert sound into electrical stimulation, requiring careful programming of individual electrodes. The process involves determining the minimum and maximum levels of electrical stimulation for each electrode to provide access to soft sounds while avoiding discomfort or overstimulation, such as facial twitching.
For children, audiologists use techniques like visual reinforcement audiometry (VRA) or conditioned play audiometry (CPA) to establish "maps" of stimulation levels. Initial activation is deliberately set at low levels to avoid overwhelming the child, as the new sensory experience can be startling. Adjustments are made incrementally to allow the patient to acclimate. Behavioral observations, such as facial expressions or crying, guide programming adjustments.
While the programming is fine-tuned over time, frequent follow-ups in the initial weeks are essential to account for changes like electrode integration or physiological factors. Historically, follow-ups were weekly, but modern practices favor less frequent visits to allow the brain to adapt to consistent programming. This approach reduces unnecessary adjustments, fostering better speech recognition and sound comprehension over time. Follow-ups typically transition to 6- and 12-month intervals as the implant stabilizes, striking a balance between careful management and the brain’s natural adjustment process.
[Dr. Gopi Shah]
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.
…
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.
…
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.
Overcoming Early Challenges in Cochlear Implants
The initial months following cochlear implant activation involve significant guidance and support for families, focusing on consistent device use and adapting to the new technology. Families are advised to prioritize wearing the implant for 10–15 hours daily, though achieving this can be challenging, especially with young children. During the first month, the emphasis is on learning the basics, such as charging batteries and positioning the implant. Advanced features like connectivity and volume adjustments are introduced gradually. For children, developing the habit of wearing a device is key, and maintaining patience through initial resistance is crucial as they adapt.
Families often seek help with logistical issues, including battery management, program changes, and connectivity. Questions about magnet strength, which may require adjustments due to changes in swelling, and volume levels, which some may request to increase earlier than planned, are also common. Audiology clinics address these concerns through in-person support or, increasingly, remote options. Remote programming is available through some manufacturers but is still in early stages, with barriers such as limited tech-savviness, logistical challenges, and reimbursement uncertainties. Tools like remote check-ins allow audiologists to monitor progress and identify issues without requiring in-office appointments. While telehealth in audiology is expanding post-COVID, limitations remain in terms of integrating hearing devices with remote systems.
[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.
…
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.
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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