Live events on healtheo360


Brought to you by:

 
h360 LIVE: Rachel S. Pizarek, AuD and Rebecca Alexander
h360 LIVE: Rachel S. Pizarek, AuD and Rebecca Alexander


DAVE: Well good afternoon and welcome to h360 LIVE. My name is Dave Duplay, and joining me here in the studio this afternoon as always is my friend and colleague from healtheo360, Ms. Courtland Long. Well Courtland, Happy New Year.

COURTLAND: Happy New Year Dave.

DAVE: You know, you come back, 2017 sporting a new haircut. You got to tell me a little bit about that.

COURTLAND: Bit of a surprise, right?

DAVE: Bit of a surprise. I like it.

COURTLAND: Well thank you. So, over the weekend I decided to cut off 8 inches of my hair, and I have donated it to a great organization called Children with Hair Loss.

DAVE: You know, it’s a great organization. And as you know, both my son and my daughter have donated their hair. I kind of wish my son wouldn’t let his hair grow that long to be able to chop off 6, 7, or 8 inches and donate it. But, it went to a worthy cause. And such a great opportunity to do that for kids who need wigs and are going through some kind of treatment.

COURTLAND: Yeah, absolutely. I was really honored to be able to donate to them.

DAVE: Well, we’ve got a great show for you today. Coming into the studio is Advanced Bionics, and they are doing some really great stuff for the hearing impaired. Can’t wait to get them in to talk to them. We have Rachel Pizarek who is from Advanced Bionics, and as a special guest we also have a patient wearing one of their cochlear implants- Rebecca Alexander. She is an author, she’s an extreme athlete, she’s got a cochlear implant. It doesn’t slow her down. I can’t wait to get into the discussion because this technology is so great. These two ladies are really hitting out of the park.

COURTLAND: I know this is going to be a great show. Well, Rachel and Rebecca thank you both so much for joining us. We can’t wait to hear your stories and learn more about Advanced Bionics. So, Rachel can you tell us a little bit about some of the history and mission of Advanced Bionics?

RACHEL: Absolutely. Thank you for having us here today. Advanced Bionics was founded in 1993, and they’re actually a Southern California company so it’s the only American cochlear implant company right now. And it was founded by Al Mann. He just really wanted to focus on improving patient quality of life for people who have hearing impairment. And so he kind of dabbled around in a few different kinds of technologies at that time and that turned into Advanced Bionics. And then in 2009 we were actually partnered up with Sonova Holding, and our sister company is actually Phonak, who is a hearing aid company. And they have six years of innovative hearing aid technology, and we’re just very fortunate to be able to have them as our sister company, and involve their technologies with us. Really our mission is just to provide the best technology to people who have hearing impairment to improve quality of life.

DAVE: You know, what a great story. A gentleman wanting to improve the quality of life for people with hearing loss. Did he have somebody in his family or himself that had hearing loss that kind of drove him for this quest?

RACHEL: You know, I don’t know too much about his history, but I think he was just one of those people that was engineering-minded and interested in technology. He actually dabbled in other things as well like micro infusion technology and spine technology so he did a lot of different things beyond just hearing loss and I think it was just like that mind that drives- you want to learn more and help people.

DAVE: I really love hearing stories like that. It’s just really near and dear to my heart. Well, Rebecca tell us a little about your story with your hearing loss. Can you kind of take us back, and give us a little history about yourself?

REBECCA: Sure. So, I am a psychotherapist living here in New York City. I’m the author of a memoir called Not Fade Away: A Memoir of Senses Lost and Found. I’m a fitness instructor, a Lulu Lemon ambassador, and an extreme athlete. So, I live a very busy, active lifestyle and hearing is a huge part of my life. Being able to work with my patients, being able to be out in these difficult environments when I’m competing. So, I have something called Usher syndrome. And Usher syndrome is the leading cause of deaf blindness in this country and around the world. I have type 3, which is the most rare form. There’s about 100 people that we know of worldwide that have the condition that I have. So for me Usher syndrome means that I’m progressively losing both my vision and hearing. So, a normally sighted person has 180 degrees of vision. I have just about 10 degrees of vision, of my central most vision. And my hearing loss has been progressive. I’m actually very fortunate because my hearing loss when I was a child was so minor that I was able to develop speech. Speech is an auditory skill. So, I’m fortunate not to have impaired speech, but as I got older I started wearing hearing aids. And when I was about 18 or 19 I experienced a significant dip in my hearing, and that was when I really needed to start wearing hearing aids full time. And in May of 2013, I was implanted in my right ear. My right ear had become a candidate for a cochlear implant. Essentially I had 26% discrimination, which means that 26% of the time someone spoke to me I could accurately repeat back what was spoken. And with the hearing aid 28% of the time I could accurately repeat back what was spoken. So, clearly the hearing aid was not doing me much good. My cochlear implant has changed my life dramatically. There’s no way to really sort of explain it, but I’ll do the best I can. My hearing now, about 3 or 4 years out, is somewhere between 94 and 98%.

DAVE: Oh, wow.

COURTLAND: In talking with you ladies before the show, Rebecca you shared with us that you did so much research on different cochlear companies and you said Advanced Bionics had some of the best audiologists out there, and that’s what really drew you to them. So, Rachel, as an audiologist, I’d like to know what sort of drew you to the interests in that field?

RACHEL: Absolutely. So, I actually have a sister with hearing loss. She was born with mild to moderate hearing loss, and she’s actually a musician so it was really kind of a fun thing to see her overcome that. That’s when I first became aware of the field of audiology, and then it sort of became a vocation for me as I was going through school. It just kept coming back in my life and it was a really decision to go and get my doctorate in audiology. And I always felt drawn towards cochlear implants specifically, so when I was working in the clinic and I kept seeing cochlear implant patients I decided that I wanted to see only cochlear implant patients and I wanted to learn more about the engineering side and the technology. That was where my decision to go into the industry and work for Advanced Bionics came from. The decision to work for Advanced Bionics was a no-brainer. I think, just like Rebecca said, it was the people who were working for the company that really meant a lot to me.

DAVE: So, Rebecca, you mentioned that you had several years back the implant. How did you come across AB? I’m interested…you know when you found them. How was it you found their organization and what kind of research did you do before you made a decision to go with them?

REBECCA: I did a lot of research. There are three implant companies: Advanced Bionics, Cochlear, and MED-EL. And I reached out to all three companies. In the US, Cochlear and Advanced Bionics are sort of the ones that generally are solicited to us as consumers I think the most for whatever reason. So I reached out to all three companies. I said I’d like to speak to an audiologist, can I set up a time with someone. And I skyped with an audiologist from all three different companies. The audiologist that I spoke with from Advanced Bionics, her name is Christine Rafter. She’s an incredible audiologist, she’s so knowledgeable, she’s so patient. And as someone who was facing a cochlear implant for the first time, I had a lot of questions that I’m sure she hears on a daily basis. She was totally willing and able to explain everything I needed to know. I was impressed by her knowledge; I was impressed by her personability. I felt like this was a company that after I get implanted will follow up with me and really do the type of continuity of care that I’m looking for.

DAVE: Awesome.

COURTLAND: So, Rachel, Rebecca is explaining I think one small part of what your role entails at Advanced Bionics. Can you give us some more insights on, you know, what all it is that you do at AB?

RACHEL: Absolutely. So, my title is actually clinical specialist, and my role is really to work with all the different hospitals and clinics in the New York City/New Jersey area who work with Advanced Bionics technology. So, we have a team across the world of people like me who go into the local clinics and work with these audiologists so that…Basically we have new stuff that comes out every year. There’s always newly launched processors, newly launched implants, new software, upgrades for patients. And so I go out and share that knowledge and train the audiologists in the field. But, there’s also a section of my job that is to work with the recipients and patients as well which is one part of what Rebecca is talking about. Working with patients in the beginning when their candidates and then maintaining that relationship once they get implanted through oral rehabilitation and everything beyond the cochlear implant.

DAVE: So, Rebecca, you mentioned prior to the implant you were wearing a hearing aid. And you noticed over time that it was no longer working for you. And then you get the cochlear implant. Did you have to teach yourself how to listen again? When you put the cochlear implant…when you get out of surgery and it’s installed is it like, wow what a difference? Take me through that.

REBECCA: Wouldn’t that be awesome if that was the way it went?

DAVE: Right? I’m sure they’re working on it now. These people don’t sleep, I got to tell you. The technology is great.

REBECCA: That’s true. So, you know, there’s a few things and everybody’s experience is very different. For me, I was an ideal candidate because I was raised as a hearing person. I had the auditory skills. I had to wait two weeks to be “turned on,” to get the processor because the incision, essentially the site location of where the implant was implanted had to heal. By the way, they used to shave a big part of the side of your head and they would implant it that way. I have a very small incision and scars right behind my ear that nobody can see, and so I never had to deal with having a shaved head and sort of what comes with that. And I was really grateful for that. But, it is a skill you have to relearn. You have to learn how to hear digitally. I try to explain to people what the difference is between hearing with a cochlear implant and a hearing aid, and the best way I can describe it is that listening through a hearing aid is sort of like listening through a cassette tape, and listening through a cochlear implant is like listening to a DVD. It is so crisp and clear. So a cochlear implant is a speech processor. One of the things that they’ve been working on for some time is music appreciation because it was initially difficult to sort of, you know, come back into the field of listening to music digitally. It’s become much more enjoyable for me now, but that’s something that they’re continuing to work on and has improved dramatically. But, there’s a tremendous amount of listening therapy. It takes probably around six months to a year to really feel the benefits of it, but even the day after I started using the implant I was able to face time with my mom in California and discriminate some of the words that she was saying that I couldn’t have discriminated before. And that was just one day. So, it’s a process of relearning. It’s a lot of work. Everything to me in my life that’s ever been worth it has always been a lot of work and there’s no question that this has been above and beyond the best decision I could have made for myself.

DAVE: Yeah. Well, actually we have a question coming in from our audience. Tom in Oklahoma wants to know about the implant process. Was it painful going through the implant?

REBECCA: So, you’re knocked out for the surgery. Everybody’s recovery is different. I think my recovery was a little harder than some other people’s. I had a little bit of a difficulty with my balance. That is also something that might have to do with Usher syndrome. So the combination between having the surgery and Usher syndrome probably screwed up my balance a little bit. But, in general it’s actually not that painful. I mean, it’s surgery. Any surgery you’re going to deal with recovery. But the recovery is not that bad. I think, more importantly, you have to think about the results. And the results of it over time are far worth any bit of pain that you experience in the beginning.

DAVE: What a great message.

COURTLAND: So, we had the good fortune of meeting you, Rachel, at the Hearing Loss Association of America’s Walk4Hearing. Can you tell us, you know, what is it that Advanced Bionics hopes to accomplish by attending those events, and how important is it to be out in the field like that?

RACHEL: The Walk4Hearing is a great event that the Hearing Loss Association puts on, and it’s all over the country. Because our country is located in Southern California, we have multiple teams of people that go to the ones locally there. And for those people who are in-house, the engineers, people who aren’t seeing recipients day to day, it’s a really great thing for them because they can see how their hard work and they’re technology is actually helping people’s lives. And then locally for us it’s just a way for us to continue networking with the patients and recipients that are benefiting from Advanced Bionics, and share new innovations, new technologies, and just stay sort of in the mind’s eye with them. We do also Phonak’s and Advanced Bionics’ through Sonova also has an organization called Hear the World. And so being involved with a foundation like that where we can go to other countries, and even within our own country. I actually had the pleasure of going a few months ago to the Appalachian region of Kentucky and working with some of the coal mine workers there who suffered from serious permanent hearing losses and didn’t have the knowledge and the healthcare to be able to protect themselves from noise and then also follow through and get hearing aids. So, Hear the World is really a fantastic organization for that as well.

DAVE: Awesome. So, before we get into the next question, I’m interested…You brought a device with you. Maybe Rebecca you could hold the device up a little bit while Rachel talks about it. The device is actually interesting. You have a piece that goes in your ear, and then as I understand it, there’s little pieces that are embedded in the skull. Is that how it works?

RACHEL: Yeah. So, actually the piece that Rebecca is holding is the external processor. The part that actually is implanted is this, and we call it the implantable cochlear stimulator. This is the section here that has the little magnet on it, and this is what the surgeon is actually implanting. And then this long array is called an electrode array. This has, for Advanced Bionics, 16 electrode contacts, and those are what’s actually implanted into the cochlea, which is that little snail part of the ear. And that’s what’s actually causing the stimulation. So I have a little simulator here of the cochlea so you can kind of see about how big it is. So a tiny little cochlea. This is our internal device, which the newest one that we just launched is called the high-res ultra, and the electrode array is called the mid scala, and then this portion here is the external processor.

DAVE: The little blue piece is then magnetically attached to the base of the skull, like that. Ah, very interesting. What a great technology. And then you also make a device, you know…Rebecca is an extreme athlete. She’s in the gym, she’s on her spin bike, she’s swimming all over the place. And you make one for athletes as well, or very active people. Can you tell us about that?

RACHEL: Yeah. So, this device is actually called the Neptune processor- named for water, obviously the god of water because it was the industry first completely water-proof, dust-proof processor that allows individuals who are very active, or even individuals who may have a dirty job for example- they’re mechanics or something like that. And because it’s fully waterproof and dust-proof they can wear it all day long, they can get sweaty, they can get it wet, and they can just go home and rinse it off in a little bit of tap water and not worry about the water damaging it at all. That’s for the actual processor part, the whole cable section, and then the piece that goes on the head actually has a fully waterproof microphone as well. So that’s another way that the patient doesn’t have to worry about the sound quality being impacted at all by the water, which is a wonderful thing.

DAVE: Wow, amazing. So, Rebecca, any challenges with the device? I mean, you’re so active. Does it stay in place, or do you have any challenges or does it work pretty well?

REBECCA: It works very well. You know, I think that anybody who wears an assistive hearing device always has complaints. Because hearing aids and implants are only able to do as much as they’re able to do, we’re human. So technology is incredible, but we will always have complaints and frustrations. So you have to think of it sort of relatively to what you would be experiencing if you didn’t have the device. For me, it’s mostly the wear and tear because I’m sweating, and constantly active and going. So, they have now improved…I’ll show you with my cochlear implant. They are now improving the quality and the thickness of the actual wire so that it’s sort of more durable. For most people it’s totally fine. I don’t think people experience the type of difficulties I have sometimes simply because I do have so much wear and tear with mine. But, it’s been incredible to be able to still be as active as I normally would and, in fact, hear much better than I did before and have this device. You know, they have…Advanced Bionics and Phonak…I’m wearing a Phonak hearing aid in my other ear. They have technology where these two can speak to each other. And so I have what’s called a Rodger pen, which is like a microphone. So, when I go to yoga or if I’m going to a lecture, I can have the yoga instructor or the speaker wear the Rodger pen and it goes directly into my implant and my hearing aid and it is phenomenal. It is a godsend. For people who have hearing loss, we know what it feels like to go anywhere in a fairly big room where someone’s speaking and have no idea what’s being said. So, I’m so grateful to have that.

COURTLAND: That’s really incredible technology. I want to pivot the conversation just a little bit, and touch on something that we hear a lot about which is stigma of living with a certain condition. And we hear a lot about the stigma of living with hearing loss. So, can one of you or both of you touch on a little bit, you know, what can be done to deal with the stigma surrounding hearing loss?

REBECCA: Sure. I mean, I’m first hand, you know, I experience it. And to be clear, I think now I’m very much a spokesperson for hearing loss. One of the things that I did when I first learned about hearing loss was I decided I needed to face my fears. What was I most afraid of? I was afraid that people would think I was deaf, I was afraid that people would think I couldn’t hear, that I was stupid. I wouldn’t wear my hearing aid sometimes because I was more concerned with what I looked like than whether I could actually hear. And when I wasn’t wearing my hearing aids and I wasn’t responding to people, I appeared to be rude. Or if I wasn’t responding correctly, I appeared to be stupid. So, it’s amazing that we really create bigger challenges for ourselves just to avoid this stigma. I used to dry my hair and spend a long time so that it would cover my ears so nobody would see my hearing aids. And now, I wear my implant and my hearing aid proudly so that everybody can see it. Because the way I think to sort of work through stigma: a) face your fear- if this is what you’re afraid of then maybe this is the best lesson you can learn, and that is to be who you are. I learned sign language, I learned tactile sign language- the language of the deaf blind- to really sort of get a sense of what it feels like and that actually really helps me now when I don’t have my implant and my hearing aid on. But the other thing is, the more of us who are out there wearing a hearing aid and an implant, the more we are just, you know, like everybody else. And you see us out there, and it becomes more of a norm. The less we see it, the more sort of foreign it is, the less we know about it. So, it’s so important to be out there to educate people and also to encourage them to be able to just wear their hearing aids and explain to people what it really means if that’s what’s necessary.

RACHEL: I think on that as well from an industry side of things, this is a young industry. I mean, what is this the 90’s, 80’s/90’s where we started developing technology like this, and technology isn’t that great when it first comes out. And so, you know, the stigma also might have originated slightly from the fact that technology wasn’t that great for a while. And, is it perfect yet? No, but every day we’re advancing technology, innovating new things, making new things for our patients to get better and better. And, you touched on the Roger pen, and that’s one thing that I think is very much helping people out in those harder environments where there is a lot of noise or a large room and you need to just bring that signal directly into the ear. And that, I think, should at least help in the future moving forward with that stigma.

DAVE: Yeah. That’s awesome. Great lead into the next question. So, what else do you see on the horizon? You work with folks every day, you listen to their challenges, you try to pair them up with the device that’s going to work best for them. It’s got to be so gratifying to see the smile on people’s face when you give them the ability to hear again. What else is on the horizon? You guys, I’m sure you’ve got your scientists and your technologists working in the lab. Where do you see the future going?

RACHEL: Well, I think because of our relationship with Phonak, we’ve already created a lot of fun new technologies. One of that is our first baby with Phonak was the Naida processor, which is what we were looking at before. So, some of the innovation of Phonak has been implemented into that processor. And so because of that relationship I think that there’s going to be some great new things that come out because of the collaboration of Advanced Bionics and Phonak. And one of the most recent things that was launched was a hearing aid that was actually made specifically to work with a cochlear implant called the Naida Link. That hearing aid actually has binaural voice stream technology in it, which is something we’ve been able to do with two implants, but not yet with a hearing aid and an implant. Basically, what that does is just like maybe I would want to walk around with ear buds and hear my phone conversation into two ears, the Naida Link or two Naida processors allow someone to be able to hear the phone in both devices binaurally which obviously is a major help if you’re in a noisy environment. And it really helps out too if you’re in the car, and you want to just be able to hear somebody else that’s next to you and not hear some of the road noise next to you, having those devices communicating back and forth constantly is a major innovation for patients.

DAVE: Yea. We have another question coming in from our audience. So, Patricia from Gainesville, Florida wants to know…with the implant…obviously there’s a metal piece and a magnet. When you go to the airport, and you have to go through security, do you have to let TSA know about your device prior to going through the TSA screening?

REBECCA: You know, I though it would be so cool to be bionic and have to go through TSA and tell them I had a cochlear implant. Sadly, it does nothing. It doesn’t go off, you don’t have to notify them. I mean, I sometimes show them just because it’s me trying to be sort of fun and cool. But, yea, they don’t care. I don’t set off the system at the airport. And, every now and then, you know, if I get stopped because I have a bracelet on or whatever it is and they use the wand, the wand may go beep beep over my implant. I can’t even remember. But, it does not set off anything at the airport.

DAVE: Awesome

COURTLAND: Well, Rebecca, you are a very inspirational woman and I think you have so many great points that you’re touching on here today. So, do you just have any last bits of advice for anyone living with hearing loss or parents of children with hearing loss?

REBECCA: You know, I think we spend so much time feeling shame or feeling like we’re lesser than because we have hearing loss. And when we do that we isolate ourselves, we become less social and we become more depressed, and we become anxious about being social. And so, it is a big step to have to decide to get a cochlear implant. It does require a lot of work. But I can promise you that your relationships with people, your relationship with the world will be far greater than you ever expected if you’re able to sort of face the difficulty and the fear. And, listen, you know the night before I got implanted, I cried. I sort of mourned the loss of my right ear because, before, my left ear was always my better ear. Nobody ever walked on my right side, my right ear was more sort of decorative. And, now that I’m implanted, nobody walks on my left side. Everybody walks on my right side. I only use my right side for the phone. And it’s just incredible to me that for 34 years before I was implanted that I never used my right ear and now it’s my dominant ear. It’s incredible.

DAVE: Well, Rachel, where can we find out more about Advanced Bionics and some of the technology that you offer?

RACHEL: We have a really great website, and a wonderful social media presence. We also have a great YouTube page as well with some great videos. So, if anybody’s wanting to learn more about AB or cochlear implants in general, I highly recommend going to YouTube. I also always like to give a little shout out to the Bionic Ear Association, which is a great network of professionals from speech therapists, to teachers of the deaf, to audiologists who are always available to speak with anybody who wants to learn more or any current recipients who want to learn more about the new technology that’s available. And they can be reached at hear@advancedbionics.com, or you can search the Advanced Bionics website.

DAVE: Well, you guys are awesome. Thanks so much for joining us today. I’d like to thank you for tuning in, and I’d like to thank our sponsors for making this all possible. Remember, all of our episodes can be viewed on demand at healtheo360.com, and our podcast can always be found in the iTunes store. Well, Courtland, tell us about our social media efforts.

COURTLAND: We love social media, and we’re all over Facebook, Instagram, twitter, and Pinterest, and we use the hashtag #RealStories when posting and we’d greatly appreciate it if you would do the same. On behalf of Dave Duplay, myself, and the entire healtheo360 family, we’d like to thank you again for joining us today and we look forward to seeing you again next week.
 

Past Event Videos

h360 Live: Dr. Ira Jacobs
Aug 1, 2018
h360 LIVE: Spotlight on Survivors (part 1)
Dec 5, 2017
h360 LIVE: Katherine Bouton from the HLAA
Nov 28, 2017
View Past Events Here
View Past Events Here

Event Calendar

There are no upcoming events, please check back soon

Join the community!


You must be a member of healtheo360 in order to view this group

Register with Email Address

Already a member? Click here to login

healtheo360 believes strongly in user privacy.