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ROUGH EDITED COPY EHDI ROYAL PALM 5/6 THE VOCABULARY AND CONCEPTS OF HEARING LOSS MARCH 14, 2016 11:05 A.M. CAPTIONING PROVIDED BY: ALTERNATIVE COMMUNICATION SERVICES, LLC P.O. BOX 278 LOMBARD, IL 60148 * * * * * This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings. * * * * * >> MODERATOR: Okay. I'm going to go ahead and start. Good morning. I will be your room moderator. [Inaudible]. I'm not sure where the restrooms are, but before I ->> CART PROVIDER: No, I can't hear you. Sorry. >> MODERATOR: I will ask that if you have questions or comments, raise your hand and I will bring the microphone to you. I ask you to pass out an evaluation, fill them out before you leave the room. Our speaker today is Kelleigh Bland from North Carolina. So welcome, Kelleigh. [Applause] >> KELLEIGH BLAND: Thank you. Thank you very much. Hi. My name is Kelleigh Bland, and I have several goals today. One of them is for you to leave the room and be able to understand hearing loss in a way that you can then go home and explain it to families, or to your family if you are a parent. The other goals are to remind myself not to say cuss words and not to throw up. So I'm sure you're going to hear lots of people who are nervous. I don't speak in front of what I consider a gigantic crowd normally, so please excuse any of those mistakes or words that slip out. So in the beginning, families have their brand new baby, and all babies -- almost all babies -- in the United States are screened through the newborn hearing screening. This is done in hospital, and it's done sometimes by nurses, but sometimes it's done by trained volunteers. These volunteers are very good at giving their test, and not necessarily very good about giving bad news. These families are lost, we lose a lot of families almost immediately because the person is telling the family this isn't a big deal, just, you know, go ahead and go back and get it checked. It is a big deal. And we are losing families right then and there. From there, ideally, within a month, a baby is taken to the audiologist or the ENT, and to have their ears checked. If they fail this re-screen, then diagnostics are recommended. They are recommended to take an ABR. What an ABR is is a test of your hearing that you don't have to participate in. It's a test that we give to babies where they are asleep. The reason it's really good to get babies in early is because they can be asleep naturally. And the electrodes are put on their head and probes are put in their ears. The sound is introduced to their brain and the test lights up without having anybody have to do anything. The baby doesn't have to participate. So what happens is the baby fails the ABR, or the hearing screening. The information is that the child is deaf, and parents don't hear a single word after that. They get all of this medical jargon, and they go home with the information, and where's the first place they go with words that they don't know, but to Google. And they get definitions that look like this. Sensorineural hearing loss is a type of hearing loss or deafness in the root -- where the root cause lies in the inner ear, the vestibulocochlear nerve or the central auditory processing centers of the brain. Not helpful. The next one is conductive hearing loss, where, again, they just fill it with words. They're all technically correct, but families don't understand how to read this. And this one is my favorite. It's mixed hearing loss, where it just tells you it's sensorineural and conductive, mixed. Not hopeful. So what we're going to do today is we're going to talk first about hearing loss, about your ear, about how your ear works. So sound goes in your ear. It's caught by the outside piece called the pinna. If you don't have a pinna because you have atresia -- see, I told you I was nervous, I know these words, then sound doesn't get caught as quickly. Sound goes down through the auditory canal, and it hits the eardrum. The eardrum is a very thin piece of skin, and that sound comes down the eardrum, hits the eardrum and vibrates it. Attached to the back of the eardrum are the three smallest bones in our body, and they're the size of a grain of rice. If they're not attached physically to the eardrum, they don't vibrate. Sound comes in, hits the eardrum, vibrates the bones. Those bones tap on what is pointing there to the cochlea. It looks like a snail shell. Attached also up at the top are three loops, and those are your vestibular canals. Vestibular canals are in charge of our balance, whether we can stand or sit. They help us keep our place in gravity. The cochlea is the size of a pea or the end of your little finger. Your heart pumps blood to your body. The cochlea is responsible for pumping sound to your brain. It's the pump. If the pump doesn't work, the sound can't get to the brain. Inside the cochlea are thousands of tiny little hair cells, and these little hair cells are standing up waiting for sound to come by. Inside that cochlea is also fluid from -that is shared with the brain and the vestibular canals. When the bones vibrate inside that middle ear, which is here, the middle ear, those bones are vibrating, and they hit the cochlea. The cochlea has that fluid inside, and it starts a wave. And the wave touches over each of those little hairs in there, and this hair cell is responsible for hearing Ah, and this one for Sh, Mm, Ooo. They all hear different sounds. It's not just one. It's a group. That sound vibrates the eardrum. It vibrates the bones. It causes a wave inside that fluid, and it touches all those little hairs. And the little hairs then pump the sound down the auditory canal, here. To the brain. All of these work just as fast as you can interpret sound. They're moving all the time. Your ears are constantly on. They don't have, as Jane Midell calls, you don't have ear lids like you do with eyelids. So your ears are constantly working. The sound is going in. It's vibrating your eardrum. It's vibrating the little bones. The little bones are hitting the cochlea. The sound -- the cochlea is vibrating, causing the fluid to touch the hairs. The hairs are pumping it to your brain. What happens with hearing loss is there's a problem somewhere along one of those areas. And today we're going to talk about each of them. So we're going to talk about conductive hearing loss. Conductive hearing loss happens in the middle ear, or in the outer ear. If you do not have a pinna, an outside ear, or if you have an ear canal that is too small and sound doesn't get in as easily, then that's called a conductive loss. If your eardrum has ossified, has turned into solid, or those bones aren't connected, or they've turned rock solid themselves, they don't vibrate, sound can't get to the pump, to your brain. If you have fluid in your ears -- every single one of us has had a conductive loss at some point in our lives. We're on an airplane, and the pressure in your ear changes. Those bones don't move as well. And they don't touch the cochlea as well. We have a slight hearing loss. If you have an ear infection because of fluid in your ears or the infection sits in the middle ear in the red section that you can see, and those bones are no longer freely moving, they're now swimming in junk, and that junk slows down that vibration to the cochlea. If the cochlea doesn't get as hard pump -- or a hard tap, then the wave gets smaller. Those little hairs aren't getting as much sound as they need. If they don't get as much sound, then where you are brain doesn't get as much sound. It's all connected, as we know. Am I halfway through yet? Sorry. [Laughter] So sensorineural loss -- oh, thank you, Tammy. She's typing every word I say so that it's really, really big! [Laughter] Sensorineural hearing loss. Oh, well, let me say about conductive loss. Sometimes conductive loss can be fixed with tubes. A tube is put inside the eardrum. It's a teeny tiny little tube that allows the fluid to escape, and those bones, they can move. And everything is fine. Sometimes you need to have surgery to increase the size of your auditory canal. That little ear -- your space right here. That I've already talked about six times. So sometimes surgery can repair that. Sometimes conductive loss can be fixed with surgery. Sometimes, conductive loss is fluctuating on an audiogram, so you can hear today and not necessarily tomorrow. Then we'll move on to sensorineural hearing loss. Sensorineural hearing loss is hearing loss that is inside the cochlea. Your middle ear works. Your outer ear works. Your cochlea, or the nerve, there's something wrong in there. Sometimes those little hairs aren't as tall as they need to be. So when the sound comes in, the wave isn't touching them. If the wave doesn't touch the hairs, they can't pump the sound to the brain. Sometimes a neural loss, which is when the auditory canal doesn't connect to the brain, the pump is working but it's not getting it to the brain. I know I have lots of other things to say about that, but I don't remember what they are right now. Mixed hearing loss is when it's both. Sometimes it's conductive. You have an ear infection and a sensorineural hearing loss. Issues inside the cochlea, we don't know how to fix. It's permanent. You can have little hairs -- you and I can have beautifully working hairs today and something can happen, and if those hairs break, we as a scientist group -- I'm not a scientist -- they don't know how to fix it. So sensorineural hearing loss is permanent. And this is what I, as a parent educator, explain to parents, that they miss almost every time. This is what you need to explain to parents. Sensorineural hearing loss is permanent. And 50% of all sensorineural hearing loss is progressive. Which means it could get worse. And I have no idea if yours is one of those, and they don't either. And there is absolutely nothing that you can do to stop a progressive sensorineural hearing loss unless it's caused by noise-induced hearing loss. Noise-induced hearing loss is a very big problem these days because of head phones and how loud our world has become. What happens with sensorineural hearing loss caused by noise-induced hearing loss is when the sound comes down through the ear canal, it's in a really, really big wave because it's too loud. And so it hits into that eardrum and it makes a big vibration, and it makes those bones get really, really big vibrations, and it hits that cochlea, and the wave inside the cochlea is really big. Those little hairs are teeny tiny, and they sit there, and this giant wave crashes into them over and over and over again, and just like the beach, we wear down the hairs in our ears. And once we've worn them down, there is no fix. People in the military -- my father-in-law, who was in Korea, was a gunner. He sat next to the gun, and just over and over and over again, they didn't have hearing protection, and he's completely deaf because of noise-induced hearing loss. He has taken those little hairs, and over time, he has bent them or broken them, and they are gone. This is a hearing loss that you can prevent. You can use ear plugs. EVA. EVA is enlarged vestibular aqueducts. This is very complicated for parents. I am giving you something that parents can understand but it's not a definition that the audiologist is going to give them. The vestibular canals are the three canals responsible for our balance and they are filled with fluid. So I'd like you to think of them as a long balloon like you get from the clown, that it blows up so it's a really long balloon. EVA is a thin spot in that balloon. So when you look at the balloon, you can see that little thin spot is bulging just a little bit. And when that thin spot blows, as it can, you can go all of your life with EVA and never have it blow. But if it does, that fluid leaves the canals. There's nothing to hold it inside your vestibular canals. So EVA is associated with imbalance, problems with your balance. But if there's no fluid inside the vestibular canals, there's no fluid inside the cochlea. If there's no fluid inside the cochlea to feed those little hairs, those little hairs wither and die. If something happens to the hairs in your cochlea, you have no hearing, it's sensorineural hearing loss, and we don't know how to fix that. Yes, ma'am, there's a question in the back. Hold on one second. >> AUDIENCE MEMBER: Can you hear me? >> KELLEIGH BLAND: Yes. >> AUDIENCE MEMBER: So if a child had a hearing loss and was doing well with hearing aids, and all of a sudden there is a profound loss, she's lost all hearing, can we assume that it's burst? >> KELLEIGH BLAND: No. >> AUDIENCE MEMBER: No. >> KELLEIGH BLAND: You would have to get an MRI. A doctor would have to tell you that. If the child is using hearing aids successfully and then suddenly doesn't have hearing, I would actually take them to the audiologist that minute and request testing, or ask, could this be EVA. It could be. It could be something else. We have no idea what causes the progression of hearing loss. >> AUDIENCE MEMBER: No, I meant if the child had already been diagnosed with EVA and had some hearing, but then lost it. >> KELLEIGH BLAND: Yes. Then the assumption is that it is due to the EVA and that the fluid is no longer providing nutrition for the hearing -- for the hair cells. >> AUDIENCE MEMBER: Thank you. >> KELLEIGH BLAND: When that thin spot blows, you have sensorineural hearing loss, and there is nothing we can do to make that hearing loss better. There are things that we can do to allow the child to have access to hearing. Which we'll get to. Hearing loss can be described in many different ways that are all confusing to parents. And these are words that we know as professionals but don't necessarily remember to explain to parents. Unilateral is one-sided. Bilateral is two-sided. Just because you have a unilateral loss doesn't mean you won't eventually have a bilateral loss. But it doesn't mean that you won't go through your entire life with just a unilateral loss. Pre-lingual is before language, and post is after. Symmetrical means both ears are exactly the same, and asymmetrical means one ear is worse than the other. Progressive and sudden. So today, you are fine, but in six years, your hearing has changed a little. That's progressive. Sudden is just what it means, sudden. But it doesn't mean that progressive and sudden can't be pretty close. Progressive can happen quickly. Fluctuating and stable, that comes with a conductive loss. It does not come with a sensorineural hearing loss because we know when those little hairs don't have food, or if they're broken, we can't fix them. And congenital means you're born with it. And acquired or onset delay can mean you are born with a hearing loss that's progressive and was not detected early because it was very, very mild, or it could mean that you've done -- had a trauma or EVA, or noise-induced hearing loss. So who are the people on this paperwork that the parents are standing there staring at? The audiologist is the person who checks your hearing. They don't check your ears. They check the health of your eardrum, but they don't -- they're not the ones in charge of testing your ears. They're the ones who are in charge of listening. The ENT doesn't test your ability to hear. He checks your ear and the bones and the structure. The the oat laryngologist, I ask parents all the time, I say who is your ENT, they don't realize they're the exact same person. Oto is ear. So if you see something that says ototoxic, it means it's bad for your ear. An otolaryngologist is literally an ear, nose and throat guy. Audiogram. This is the test of your hearing, and they can look like this or like this, or like this. I love you. She just told me I only have ten minutes left. [Laughter] So I like to explain to parents. This is a parent-friendly audiogram. This isn't what you're going to get in the doctor's office, but it has the exact same lines as the other ones do. This is the key. Almost every single one you get will have a key with the symbols. The ones we're going to look at today are the R. Right, round, red. They're often not in color. The round and right are always the same. Left, you're on your own. It's an X. You just have to remember that one. This is the audiogram of a typically hearing person. Me. We're going to talk about what you hear and how loud it is. All the numbers. The zero, 10, 20, the lines going from top to bottom, that's how loud the sound is. A typical classroom is 35 decibels. You can also see that a cat meowing is at about 15. The birds over there is at about 10. Zero does not mean no sound. Zero is the softest sound you can hear. Close your eyes and think of yourself on -- at the park. No other kids around. Nobody's around, and you sigh and think, oh, I can hear the wind blowing in the grass. That's really cool. That's soft. You don't hear that sound when there are other people around. That's the softest sound you can detect. That, for me, is at the 10 in my right ear, and a 10 at the left ear. You can see that the softest sound that I can detect in a sound booth with the noise pumped right into my head and no other sound around is at 10 for me. And you can see across, as you go through the frequencies, it's about 10 all the way around. Anything under the line, you can hear. Anything above the line, you cannot hear. So this is my line. And I can't hear zero, but I can hear all of the sounds of speech. Across the top are the frequencies. I want you to think of the piano. The piano, those low keys down at the bottom, that's down here at the 125. I want you to think of going all the way across the piano. Middle C is 250 hertz. You go -- as you go across the piano, the keys -- the sounds get higher and higher. So 800 is that tiny little tink, tink, tink sound, that last one. That covers all of the sounds that humans are able to detect, the frequencies. Sorry. So we're going to go to the gray smiley face. It's called the speech banana, and all sounds of speech are in those areas. So you can see that 250, at 30 decibels, you can hear the "Z" sound. You can see that at 75, at about 750, is a baby crying. That's pretty loud. This is an example of a child with a moderate hearing loss. These are the scary kids because the parents say well, he can hear me when I say something. Yes, he can. If you yell or speak loudly, most conversation happens between 35 and 70 decibels. You can see that they are detecting it. But remember, that red circle is your wind in the grass. That's the softest sound you can hear. They can detect it, so my voice level right about now with this microphone is the softest sound that they can detect. So yeah, I look around when you yell, but that doesn't mean that I can understand you. This child can hear a little bit better, so this is a check. It's typical. You typically -- not all children follow the path, but the high frequencies are oftentimes worse. This child can hear and detect some of the sounds of speech, but look at all the things above the line. Remember, anything under it you can hear. Anything above it, you can't hear. This child can't even detect a cat. Never heard a cat or a bird. This child can't detect the sounds of C-h and S-h and forget F and T-h and S. Ooh, I gotta hurry now. Who knew that was going to happen? So this child could benefit from hearing aids. What hearing aids do is they make the sound louder. The sound comes into the ear. It amplifies the sound so it makes the wave bigger. It makes it hit the eardrum harder. Those bones go harder and the wave hits those smaller hairs because the wave is big enough to touch them. Hearing aids raise the level of the wave inside the cochlea. This is a child with a profound hearing loss. Those little -- there are no arrows on this. Sometimes you'll see arrows, which mean that you can no longer -- that's the test -- the limit of the machine. The machine doesn't get any louder. This child would not benefit from a hearing aid. This child -- that wave can't get big enough for those little hairs. This child would benefit -- could benefit, not would, could benefit from a cochlear implant. Hearing aids can bump up the sound to about 30 decibels. That's not going to help this child hear if we raise him to 60. So hearing aids are not necessarily going to help this child. The cochlear implant. This outside piece, number 1, sits behind their ear and it's a microphone. Number 2, the outside receiver piece becomes their eardrum. It becomes the thing that vibrates. It pumps the sound down number 3, the inside piece, and the electrodes inside the cochlea become the new hairs for the child to hear. So those little electrodes are the new hairs that pump the sound to your brain. In order to have a cochlear implant work, your auditory nerve has to work. If there's no auditory nerve, there's no highway for that pump to get the sound to your brain. This is a Baha. This Baha, or bone-anchored hearing aid, helps with conductive loss. If your cochlea works but the inside of the eardrum or the bones don't work, you need a new eardrum. This becomes a new eardrum by vibrating your bone and getting that vibration to the cochlea. That wave goes over -the cochlea works. A Baha only works if your cochlea works. They're not made for everyone. Two minutes. Do I have any questions? I would like to leave you -- oh, I got a question back there. >> AUDIENCE MEMBER: [Inaudible]. >> KELLEIGH BLAND: What about auditory neuropathy? Auditory neuropathy is explained as hearing loss that occurs when both sections of your ear work. The nerve and the cochlea, the eardrum are all working, but because of damage somewhere in the inner ear, or on the nerve, it no longer organizations sound in a way that your brain can understand. So the problem with auditory neuropathy is you look good on an audiogram. You've got good hearing. The problem is with the little highway, the nerve from the cochlea to the brain. That's where the problem is. The brain is not organizing sound in a way that children can understand. That is very insidious, because you can hear, but you can't understand. We talk way too fast. A child can understand 124 words per minute. We speak, as adults, at 160 to 200 words per minute. Mr. Rogers and Tom Brokaw use 120 words a minute. So I encourage you to slow down and talk to your families in a way that you can understand. Are there any other questions? I'm sorry I ran it in. Who knew that would happen. Thank you very much. [Applause] [Session concluded].