Cochlear Implant Basics
Season 1
by Richard Pocker
t is every parent’s worst nightmare to discover their child has a serious health problem. The Trull’s son was two years old when he was diagnosed with a profound hearing loss. Frequently on social media, a parent will post a desperate plea for some guidance. There is nothing to prepare them how to deal with this problem. Where do I go? Is there a treatment? How will my child fare among peers with a hearing loss? The questions are almost endless. As it has been stated before, all hearing losses are as individual as our fingerprints. There is no one correct answer. When a cochlear implant has been recommended as a solution for a pediatric candidate, there are more layers of questions. What does the operation entail? Is my child too young? Will my child have speech development? Should the family learn sign language? In some cases, the hardest decision of all appears to be; do I have the right to make the decision for my child or should I wait until they are older to make their own decision? Sarah Simmons Trull gives us her and her husband’s experience and perspective. Their son received bilateral cochlear implant surgery when he was 2 years and 9 months old. He is now a happy ten-year-old with very proud parents. TRANCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
If adversity is a test of character, Michelle Wagner has passed with flying colors. Deciding to adopt a child, a process that took a year, it was later discovered this beautiful baby had a profound hearing loss. The doctors recommended bilateral cochlear implant surgery. This required a staggering amount of research and support, all of which Michelle handled with aplomb while dealing with an impending divorce. Faced with the choice of whether her son should go the route of sign language or mainstream with hearing, she decided on cochlear implants. The road was not easy. Her son had no language skill and he was three when he received his surgery. Her story is a true testament to perseverance and love. Today Mickey is a thriving thirteen-year-old. Parents and professionals who are facing this scenario will gain insight from Michelle’s story. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
Kathy discovered her hearing loss while self-testing an audiometer as a school nurse. She realized that either the machine had a problem or her hearing. It was her hearing. Many will be able to relate to her succession of unfulfilling hearing aid solutions. She adapted to a series of vocational changes within the nursing field. Kathy struggled every step of the way. That is, until eventually, she found the right help and received a cochlear implant. Today she has a Cochlear Nucleus 6 on side and an Oticon Agil Pro hearing aid on the other and is considering a second implant. In the interim, she is constantly discovering new situations where she is able to function at a high level with better hearing. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
A recurring topic among hearing care professionals is why those with a hearing loss wait for an average of seven years before they seek help. Vanity and the fear of appearing “weak” are the reasons that appear most frequently. Jenni Ahtiainen is the founder of Deafmetal. (www.deafmetal.com ) Hearing loss runs in her family. She did not receive her first hearing aids until she was in her 40s. Being in the beauty and fashion industry, she arrived home wearing alien devices which did not fit her self-image. “… I just took them behind my ears, and I put them on the table, and I started to think, “I’m being totally honest now. I’ve been a designer for 15 years. It was only logical for me as a jewelry designer to just do something around them so that they would feel more like me.” Products are not the parvenue of Cochlear Implant Basics, but education and motivation are. I invited Jenni to sit down with me for an interview. I wanted to learn more about her motivation and her vision for the future for changing the perception of prosthetic hearing devices, such as hearing aids and cochlear implants. For listeners interested in more information and a distributor in the USA visit www.deafmetalusa.com A full list of offerings can also be found at www.deafmetal.store On the store site, there is a full list of countries where her jewelry can be found. Currently, Finland, Norway, Sweden, Israel, Switzerland, United Kingdom, Denmark, Belgium, USA, South Africa, and Australia. The list will grow so check the store for updates. TRANSCRIPT AVAILABLE AT COCHLEARIMPLANTBASICS.COM
Candidates for cochlear implants frequently ask about the need or the role of speech rehabilitation. Cynthia Robinson, the founder of We Hear Here (wehearhere.org) has more than four decades of experience in the field as an educator teaching deaf and hard of hearing children to listen and talk. A Phi Beta Kappa graduate from the University of Richmond, she received her master’s degree in Deaf Education from the Curry School of Education at the University of Virginia. She was a faculty member and for several years, the Co-Director of the Clarke Schools for Hearing and Speech in Jacksonville Florida. With her experience as a Listening and Spoken Language Specialist, she is an advocate for mainstreaming children with a hearing loss. She is the author and co-author of several books on the subject as well as the designer of classroom programs to facilitate this objective. I had the opportunity to ask her to explain why early intervention is important for pediatric cochlear implant candidates and how delay can influence the success of the outcome. She also offers insights on success of prelingually versus later deafened adults who receive a cochlear implant. Cynthia elaborates on the role of speech therapy and offers suggestions for finding local sources for speech and language specialists. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
Why would a teacher of the deaf, with her own severe hearing loss, wait years to get her own cochlear implant? I asked Mary Beth Napoli, a bilateral Med-El cochlear implant recipient and a member of the Facebook group, Bilateral CI Warrior, to share her unique perspective. She struggled with her own severe hearing loss for decades. She had years of working with cochlear implant recipients who needed auditory training after implantation. She witnessed the remarkable results her student experienced but as many cochlear implant candidates who have walked the path towards getting hearing help, she was fearful of losing her miniscule amount of residual hearing. She discusses the reasons why she chose Med-El from her point of view and the surgeon’s. Although Mary Beth’s unique medical history is complex her story is invaluable to candidates who are considering and researching cochlear implants. Her results are remarkable. She enjoys music and to be able to fully participate in all activities with hearing. She loves that she is no longer dependent on others to interpret the conversations around her. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
I first heard the term “Hybrid cochlear implant” when I met David Dorsey (his interview also appears in cochlearimplantbasics.com ) in 2017. He had enough residual hearing that he was investigating these devices. A hybrid, as the name implies, combines a cochlear implant to assist those missing frequencies along with a hearing aid to help the natural acoustical ones. It was David who mentioned Dr. Bruce Gantz as the expert in hybrid cochlear implants and he was willing to travel from Florida to Iowa for the surgery. I interviewed him not long after his activation in 2019. In 2021 he returned to Dr. Gantz to receive his second hybrid for his other ear. Dr. Gantz has been in the field of cochlear implants for four decades. All the way from the pre-FDA approval days to the most recent advancement, robotic cochlear implant surgery. He explains why robotic surgery the key to better retention of residual hearing. Dr. Gantz took time from his busy schedule to sit down with me to talk about the history of his involvement with cochlear implants, his specialty and the exciting development of robotic surgery and his vision of the future. TRANCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
This is Part 2 of the interview with Chery Edwards. It is almost two months post-operation. She flew from Denver, Colorado to Sarasota, Florida to receive a Labyrinthectomy and be simultaneously implanted with a cochlear implant by Dr. Jack Wazen at the Silverstein Institute. Chery returned home after two weeks recovery for the Labyrinthectomy. She was activated in Colorado and has had three MAP sessions with her audiologist after receiving a Cochlear Nucleus 7. This was the ideal opportunity to catch up with her while her reactions to the experience are still fresh and to talk about her recovery, rehab and how she is experiencing the issues of her Meniere’s as well as hearing. Her insights about music are also invaluable. Chery has a remarkable and inspiring story. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
Meniere’s disease is insidious. It not only causes severe vestibular balance issues, it often leaves its victims deaf in one ear or both. Chery Edwards was such a victim when she was hit with Meniere’s 20 years ago. Her vestibular issues caused bouts of vertigo which caused her to give up driving. She could never predict when it would strike and cause her to lose control of her car. It also left her deaf in one ear. Although Chery is among one of the most positive personalities I have met, she was also resigned to her fate. That was until she recently saw a YouTube video with Dr. Herb Silverstein, who described a possible solution to the symptoms of Meniere’s. Traveling from Denver to Sarasota, she had a consultation at the Silverstein Institute. She will receive a Labyrinthectomy to remove her middle ear and resolve the vertigo issues and simultaneously receive a cochlear implant to bring back her hearing with a Cochlear Nucleus 7. Chery describes her struggles with Meniere’s and her upcoming operation which will be performed by Dr. Jack Wazen at Silverstein. This interview will be in two parts, the pre-op and the post activation. The two microphones recorded at different levels. The transcripts will assist if you cannot hear the questions. Nonetheless, Chery’s experiences speak loud and clear. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM
I wish I had met Sam and Janet Trychin sooner. With more than twenty books, countless articles, workshops, and seminars on the psychological and coping aspects of hearing loss since the 1980s, it is safe to say that they are the foremost experts in the field. An early supporter of Self Help for the Hard of Hearing (SHHH) the precursor of the Hearing Loss Association of America (HLAA) Sam’s connection with the founder Rocky Stone is revealed in this interview. Janet, an audiologist, along with Sam, creates an unbeatable team. Just as two ears are better than one, together they have created resources found nowhere else. Their website is Trychin.com If you, or someone you know, has a hearing loss, progressive or sudden, single-side, or bilateral, the Trychin’s interview is invaluable. NOTE: Within the interview, HLAA is mentioned as a source. The correct website address is hearingloss.org TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM