PODCASTS

Our mission is simply to help those who ask, to find a way out of the isolation of deafness.

You or a loved one or a friend has discovered it is no longer possible to comprehend speech with a hearing aid.

The ENT doctor or audiologist has suggested you might investigate a cochlear implant.

You can hear sounds, but nothing makes any sense. When with friends, you sit in silence, afraid to make a statement only to be told, “We just talked about that five minutes ago.”

You might laugh at jokes when everyone is laughing but have no idea what the joke was about. You go along to get along.

When you ask people, “What did they say?” they might reply, “Never mind. It’s not important.”

You cringe from the pain of rejection.

You drift off into a sense of isolation. Social activities go by the wayside. Participating in them is too much trouble and too stressful. Phone calls have been impossible for years. You either depend upon others to make the calls for you or use captioning services that make social interaction on the phone possible but uncomfortable because of the intermediary interpreter.

We are here to tell you; those days may be over for you. Cochlear implants may be the solution to ending all of the isolating and socially embarrassing incidents mentioned above.

Cochlear Implant Basics is exactly what the title implies. It is a guide designed for those who are just starting their investigation into the possibility of restored hearing. It is for those (and we have been in your shoes) who are clueless what questions to ask at this point. It will not be filled with medical jargon or confusing terms or explanations. Once you become familiar with the basics and if you wish to move on to the next level of research, we will point the way.

Cochlear Implant Basics consists of podcast (with transcripts) with candidates and recipients of cochlear implants. There are also interviews with surgeons and other professional who serve the hard of hearing and deaf community. It is not sponsored by anyone, and it is not brand specific. All brands of cochlear implant are welcome and treated with respect.

It has been produced with you in mind, whether it is for yourself, a loved one or a friend. It will give you the working knowledge to interact with professionals and do your own research down the road.

For those who prefer a book over reading on a screen, twenty-five of the interviews, along with rehabilitation tips and sources, are available in the print edition found on Amazon.

Paul J. Boldin Jr.

Paul J. Boldin Jr., a recipient of bilateral cochlear implants, shares his experience in a podcast interview. He was diagnosed with bilateral sensorineural hearing loss at a young age and received his first implant at around 26 months old. He later received a second implant at age four. Paul’s parents initially tried hearing aids, but they were not effective, leading to the decision to proceed with cochlear implantation. Paul discusses his journey from elementary school to high school, where he faced no bullying and had accommodations such as reduced distraction environments and preferential seating. He also talks about his experience playing high school football with a specially modified helmet to protect his implants. In college, Paul attended Alfred University, where he received accommodations and support from the Center of Accessibility Support Services. He emphasizes the importance of class sizes and accommodations when choosing a college for individuals with cochlear implants. Paul encourages candidates and their families to keep trying, seek support, and explore resources available to them.

Rebecca Alexander

I was recently given a gift. It was a copy of the book, Fade Not Away: A Memoir of Senses Lost and Found, by Rebecca Alexander, a psychotherapist, who is deaf and blind from Usher syndrome.

It was story I read cover to cover without putting it down. I knew I had to ask her to be interviewed for a podcast.

Many times, the rhetorical question has raised its ugly head: Is it worse to be deaf or blind. Usher syndrome leaves its victim with both.

As Rebecca explains, there is often no timetable for the progression or the degree of the disease. Living under the sword of Damocles, one can be overwhelmed with anxiety or grapple with the problem head on.

Rebecca Alexander is an unstoppable spirit and an extreme athlete. She has summited Mount Kilimanjaro as well as the Inca Trail to Machu Picchu.
As a therapist, her insights to her own condition and those who suffer from chronic complications are invaluable.

Her website is www.rebeccaalexandertherapy.com

Isabella Rodriguez

Many who begin their investigation about cochlear implants are confused about the differences between cochlear implants and a device called a BAHA (Bone Anchored Hearing Assistance or Aid). They are under the impression that they can choose between these interchangeably.

The BAHA and the cochlear implant are designed for very different types of hearing loss and only the ENT or surgeon can make the determination based on a battery of tests.

I was fortunate to be introduced to Isabella Rodriguez, a recipient of a BAHA since the she was three months old. Her journey has been remarkable. She is amazing and explains the stages of her hearing loss and her decisions to make the best of her life. In fact, she is an inspiration and a prime example of an unstoppable dynamo.

I see nothing but a brilliant future for a very articulate and caring person. I am glad she took the time to talk with me.

Dr. Jack Wazen Part 2

Dr. Jack Wazen is an otolaryngologist in Sarasota at the First Physicians Group. He has more than four decades of experience. I interviewed him in 2019 on the topic of cochlear implantation for this website.

The current hot-button topic is Over the Counter (OTC) hearing aid. They were recently approved by FDA for sale in pharmacies and other outlets. These devices are designed for mild to moderate hearing loss and expected to expand the availability of hearing devices at a lower price than prescription.

They may be purchased without a professional hearing evaluation. Is obtaining a hearing aid without a medical exam be good or bad for the public? Is a lower price necessarily the only consideration for a person with a hearing loss?

I was glad that Dr. Wazen was able to sit down with me an opine on this issue and other aspects of OTC hearing aids.

Dr. Herb Silverstein

For more than four decades, Dr. Herb Silverstein has been a leader in otology and has developed surgical and diagnostic procedures in the area of Ménière’s disease and hyperacusis. He is recognized as a world authority and patients come from all corners of the globe to consult with him.

President and Founder of the Florida Ear and Sinus Center in Sarasota Florida, he is also the founder and head of the Ear Research Foundation, which he describes in his interview.

Doctor Silverstein has more honors than space to describe them all. I was privileged to have him take time from his busy schedule to sit down for this interview.

I wanted to cover the basics of Ménière’s and hyperacusis and as a bonus within the interview, I learned of his leading role in the trials of FX322, and experimental drug being researched for its efficacy to restore the hair cells within the cochlea. This is a subject close to the heart of many with hearing loss hoping for a cure.

His love of research shines through this interview. That love will keep him going forward for many years to come.

Donna Sorkin

Because less than five percent of those who could benefit from a cochlear implant either do not take advantage of the device or fall outside of the criteria for coverage, I am constantly seeking articles about coverage.

Donna Sorkin, the Executive Director of the American Cochlear Implant Alliance (ACIAlliance.org) recently did an online presentation about the changes in the criteria for adults covered by Medicare.

By dogged persistence and seven years of work and cooperation with surgeons, audiologists, and medical centers, as well as public input (including from one of the best known cochlear implant recipients, Lou Ferrigno) eventually and happily CMS, the administration arm of Medicare, broadened the criteria.

The American Cochlear Implant Alliance, founded in 2011, has a very diverse involvement with hearing loss and cochlear implants as you will learn in this interview. From information to rehabilitation, you will find it all at ACIAlliance.org

Thank you Donna Sorkin for your advocacy and for taking the time to talk to us.

Susanna Dussling

Resilience is an understatement when describing Susanna Dussling.
Suffering from a severe hearing loss, possibly from birth, once diagnosed, her parents took every measure to be sure she was mainstreamed in school.
The setbacks and triumphs of her hearing loss made Susanna develop a strong, independent personality. She needed it to survive in her personal life and in the world of business.

Her hearing declined and eventually she received a cochlear implant. She tells of how it changed her life.

An expert horse woman with a passion for show, her cochlear implant allows her to compete seamlessly and with aplomb.

Susanna as a child struggled with “deaf speech” but today thrives on presenting inspirational public speaking and training to organizations. Her theme is Bouncing Back with Susanna. Get ready for the ride of your life when Susanna tells of her hearing journey.

Susanna can be reached at http://www.susannamdussling.com/

Jenni Ahtiainen

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.

Lou Ferrigno Part 1

Champions are a breed apart. Their motivation and their dedication are far beyond average. Mohammed Ali said it best; “I hated every minute of training. But I said… Don’t quit. Suffer now and live the rest of your life as a champion.”

When the opportunity came to interview a recent cochlear implant recipient who also is a special champion I jumped at the chance. Lou Ferrigno at age twenty-one was the youngest Mr. Universe and later went on to win it two years in a row along with a long string of other wins in body-building competitions. His career included his best-recognized performance as The Incredible Hulk in the television series.

In a recent interview, Lou mentioned being bullied as a child for his hearing loss. I could identify with that. We both lost our hearing at about the same age and used analog body-worn hearing aids with a wire running to an earpiece. I was a skinny weakling, but I could not image anyone picking on Lou and live to tell the tale.
After suffering with a life-long hearing loss Lou was implanted in April and is now using a Cochlear Kanso 2. Like most cochlear implant recipients, he mentions how he waited too long to get a CI. The misconceptions held him back and it was only after a friend received a CI did Lou understand the potential for getting out of the isolation of deafness and into the world of sound.

His dedication to rehabilitation is a factor to his rapid success. For a man who understands dedicated training it should come as no surprise. There is a lot to learn here about that dedication to perfecting his hearing and speech.

Lou is also the first recipient I have interviewed with experience with the Kanso 2. There is insight to this device that candidate who are deciding which Cochlear processor to choose will find helpful.

Lou Ferrigno Part 2

One of the more frequent questions that candidates for cochlear implants have been about rehabilitation.

Once a candidate receives the implant and is activated by their audiologist, the initial sounds might be robotic or sound like Mickey Mouse. Commitment to doing rehabilitation exercises is key to getting the best results. Your brain needs to learn to hear again and the more one does the rehabilitation programs, sounds will normalize better and faster.

Just over a year ago, I was honored to have the opportunity to talk with Lou Ferrigno about his new cochlear implant and his experiences that let up to his decision to get one.

Recently I heard him participate in a video presentation and I was amazed at the improvement in his diction. In June 2022, I met him at the Hearing Loss Association of America convention in Tampa and again impressed with the improvement.

He graciously agreed to do a follow-up interview with me. The results are best demonstrated by listening to parts one and two for comparison.

He also talks about his decision to seek out his options to move forward to get a cochlear implant for his second side.

Thank you Lou Ferrigno for your insights and congratulations on the improvements.

Rehabilitation never ends. Lou’s story is a reminder this hearing journey is not a race but requires dedication to getting the best hearing you can achieve.

Olivia Allen

As soon as I finished recording this interview with Olivia Allen, I started searching for local flying instruction. Why? Because she reminded me of a long forgotten item on my to-do list from my pre-cochlear implant days; to learn to fly.

At the time, deafness intimidated me from accomplishing anything that required hearing. After listening to this remarkable cochlear implant recipient, I was inspired to accomplish that goal.

Deaf from birth, Olivia received a cochlear implant at eleven months of age.
Since that time, as she noted in the interview, “The sky is the limit.”

Working her way to obtain a commercial pilot’s license, I think her story will inspire others to reach for their goals. A cochlear implant is the tool you might need to achieve your dreams.

Elena LaQuatra

“You don’t look deaf.”
I can’t recall how many times I heard that comment from strangers. I suspect most of us, at one time or another, have been shocked by the public’s ignorance of hearing loss.

Elena LaQuatra, a television news anchor, gives us her take on how to reply to that insensitive comment with tact and aplomb. She sees it as an opportunity to educate the public.

Her deafness is a part of who she is, but it does not define how she lives her life. She is unstoppable. Along with help from her colleagues and family and friends, she has risen to the top of her game.

Deafened by meningitis at age four, her parents opted to have her receive a cochlear implant by the time she was five.

Her story reiterates that receiving a cochlear implant can open the world to a recipient. Those who are willing to work hard, are on the road to success.
We may have an invisible disability but there is no reason to become invisible.
Listen to or read her story and be inspired.

Mike Dailey

I have seen glimpses of Mike Dailey, the fireman with bilateral cochlear implants. His story seemed to peek out now and then on social media from time to time.

Until he joined the Facebook group, Bilateral CI Warrior, I had been unable to contact him.

Now I have his interview, and this is why is it so important that candidates and recipients take time to listen to it or read the transcript.

Mike embodies the concept that if you have talent, a cochlear implant is not an impediment to accomplishing your dreams. He is a shining example of that.
Many times, I have seen people post the question: What kind of job can I look for if I have a cochlear implant? As Mike tells it, there are no limits. Zero. Nada. None.
Inspirational does not begin to describe Mike Dailey.

Listen or read and learn.

Sam and Janet Trychin

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 no where 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

Dr. Kelly Breese

Tinnitus is the topic and Dr. Kelly Breese is the expert I wanted to interview.

Tinnitus is often insidious.It can build gradually before a person realizes they have a problem.

Sometimes it happens suddenly.

It comes in many forms from a minor ringing in the ears to a roaring torrent of sounds that drive the victim to distraction.

Certified by the American Board of Audiology, as an Audiologist and a specialist in Tinnitus Management, her videos on this important topic caught my attention and I was fortunate to have her take the time from her practice, Hearing Aids of Sarasota to sit down for this interview.

Candidates for cochlear implants often ask if a CI will help with their tinnitus. As Dr. Breese explains, the answer is maybe. While there is currently no cure for tinnitus, there are methods to help cope.

In addition to her interview, further information is found on her website hearingaidsofsarasota.com as well as her Facebook page, of the same name.

Smriti Rijhwani

I discovered Smriti through posts on LinkedIn. I was thoroughly impressed with her drive and ambition. Never slowed down by her bilateral cochlear implants, I asked her to sit down for an interview.

With a hearing loss at birth and a combination of hearing aids and speech therapy, her parents perceived the limits of that option and decided to have her receive a cochlear implant when she was four a half year old.

Smriti discuss the challenges and her parent’s decision to get the second side implanted when she was ten. She talks about the differences in rehabilitation for the second side.

Although I have interviewed parents of pediatric cochlear implant recipients, I was glad to have the opportunity to hear the story firsthand from a woman now in her twenties.

I hope candidates contemplating a second cochlear implant will find inspiration in Smriti’s story.
I know I did.

Dr. Bruce Gantz

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 is 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.

Robin Chisholm-Seymour

Is sudden hearing loss equivalent to an amputation of a limb? Does that loss manifest itself in anger or apathy or something else? Is it different for those who experience a progressive hearing loss versus a collapse of all their hearing?
Recently I posted a question on social media: “Has anyone utilized a grief counselor after experiencing a sudden hearing loss?”

The post resulted in a spate of responses. Some wished they had a resource when it happened to them. Others who found support through family and friends. There were those who “toughed it out” and others who found comfort through the power of prayer.

Robin Chisholm-Seymour, a bilateral cochlear implant recipient, and a fellow member of the Facebook group, Bilateral CI Warrior, has extensive experience in grief counseling for both hearing loss as well as those who have lost their animal companions was gracious enough to sit down with me for an interview to explore this subject.

We discussed grieving in broad and specific terms, common behaviors and coping techniques and commonalities as well as the differences in the way people handle hearing loss.

If you or a loved one has experience hearing loss, Robin’s insights will help you find the answers to cope with the loss and find a way forward.

Cynthia Robinson

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.

Michelle M. Wagner

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.

Nanette Florian

Many cochlear implant candidates are more concerned about music than speech.
When I learned about Nanette Florian’s passion for helping fellow cochlear implant recipients and those with hearing loss get the best out of music I knew I had to ask her to sit down for an interview.

She started playing the piano and singing when she was five years old.
She is a former member of The New Christy Minstrels, she was the standing bass and lead singer during her time with the group.

Eventually, her hearing declined to the point where she stopped playing. That was until she received a cochlear implant 14 years ago.

Today her outreach is through her website Hear Music Again hearmusicagain.org
Along with her brother John, who also suffers with a hearing loss, they have two internet radio stations WHMA (Hear Music Again) and WHRA (Hear Rock Again). They are an eclectic mix of genres that were selected not only for the clarity but variety. There is a wide range of rock, blues, and funky soul as well as soft rock and country and classical music.

I will leave it to Nanette to tell her own remarkable story.

Mary Beth Napoli

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.

I am glad she took the time for the interview. I am sure candidates will benefit from her story.

Suzanne Tillotson

I recently came across this post on social media. It stopped me in my tracks and I knew I had to have Suzanne Tillitson’s story as part of the library of podcasts on Cochlear Implant Basics.
There seems to be nothing that can stop Suzanne from accomplishing her goals. She is an ICU nurse with bilateral cochlear implants. Cochlear implants made much of it possible but her amazing perseverance and dedication is inspirational.

This is her story:
Hi everyone! I hope you all are doing well. The bilateral CI life is treating me well. My word recognition is at 98% bilaterally and if we weren’t masked (double and triple ply) I’d be able to understand most anything. Do I still practice? Absolutely!
What is my best story since I’ve become bilateral? Well, it’s actually a sad story. I’m all about the positive, but there are some sad things my implants have allowed me to do.
This year has been difficult for all involved. It’s been especially difficult on patients hospitalized with COVID and their caregivers.
Most recently I cared for a person at the end of life. The family was snowed in several hours away. I clocked out, set up the video monitor and called the family. My Eko stethoscope was gingerly placed where I could hear my friend’s heartbeat while I sat nearly under the bed and held the hand of a dying father while his daughter cried and said “Dad, I’m holding your hand.” I’d squeeze his hand to let him know he was not alone. “I’m with you Dad. I’m singing your favorite song Daddy. You are my sunshine, my only sunshine.” All the while I held his hand. I stayed tucked under the view of the video in hopes the family didn’t feel I was intrusive.
The heart beat slowed, breathing slowed to a few breaths a minute and their father passed away peacefully holding my hand as proxy to his daughter.
My implants made this possible. My implants allowed me to return to my job as a nurse. My implants allowed me to be uprooted and deployed (I don’t like this term) to another hospital and begin the life of a COVID nurse. My implants allowed me the honor of hearing the last heartbeats of the loneliest people in the world. They provided me with hope for a better future for myself and now I work to provide a better future for our families and those recovering from COVID.
Never sell yourself short. Being deaf doesn’t define me or limit me. It made me a better nurse, mother, and wife. The implants gave me the ability to communicate properly and effectively. If you are ever having doubts, think of me. If I can do this every day. Anyone can.
Much love to you all in your journey.

Jack Barnes

Jack Barnes was implanted in 1988 when he was 11 after suffering a total sudden hearing loss. It was an experimental process at the time.

Thirty-three years later is still using the original surgical implant but is now on the 8th generation of external, improved technology. He recently received a Cochlear Nucleus 7. He is a unique resource who has traveled the entire road of the history of cochlear implants. Inspirational because of his perseverance and, as you will discover, his unstoppable drive in his endeavors.

Richard Pocker

Totally deaf for 35 years, Richard received bilateral cochlear implant surgery just prior to his 65^th birthday. He went from zero speech comprehension to 85% with time and effort at rehabilitation. He was implanted with two Cochlear implants and activated with two Cochlear Nucleus 6 (which he later upgraded to Nucleus 7 external processors.

Only to prove that long term deafness does not necessarily result in poor results of getting a cochlear implant. Today he enjoys socializing, using the telephone (something he was unable to do for 35 years) and hanging out in the local vinyl record store, Daddy-O’s.

Sarah Simmons Trull

It 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.

Debbie Entsminger

Debbie is a bilateral Cochlear Nucleus 7 recipient. Is also an amazing person. Her hearing loss was gradual so she does not know when it began but it was diagnosed when she was in college.

At the time it was a 10% loss. An annoying inconvenience. Next time she was tested it was 20%. With each successive test, her hearing loss grew and grew until it was 80% or more.

Now it was a severe handicap. Debbie persevered and continued her career albeit at a difficult and exhausting pace.

Eventually she considered getting a cochlear implant but she had a major complication, a condition known as Bing Siebenmann Dysplasia which lessened her chance of a successful activation.

Again, with her deep faith, she moved forward to achieve remarkable results and later decided for a second surgery to become bilateral. She now has 95% speech comprehension.

Dr. Jack Wazen

I recently overheard Dr. Jack Wazen mention a study he was conducting at the Silverstein Institute in Sarasota regarding pre and post-operative vestibular issues of cochlear implant recipients.

It is a subject of interest to many candidates and I was fortunate that Dr. Wazen agreed to find time in his schedule to sit down for an interview and talk about the study and a wide range of issues relating to cochlear implants; success rates, MRI compatibility, age issues and implant success rates and most of all issues he has faced in his decades of experience as well as his vision and hopes for the future of cochlear implants.

This is an interview you won’t want to miss.

Maria Anderson

Maria Anderson is a shining example of a cochlear implant recipient who has never let them slow her down for a moment.

A marathon runner, hiker and adventurer she recently completed a marathon in Greenland while wearing her Advanced Bionics processor clipped to her running shorts. She has also hiked Kilimanjaro, and to the base camp of Mt. Everest as well as around Mount Blanc.

Maria’s hearing loss began in her mid-30s. She continued to compensate, determined not to wear a hearing aid so not to show her disability. She continued to struggle for 10 years before a total loss in her right ear forced her to reconsider.

She received an Advanced Bionics implant in 2007 and two years later went bilateral. Both operations were done by Dr. John Niparko at Johns Hopkins.

She discusses her fear of losing the 8% residual hearing in her left before going bilateral, her work environment, and the support from her family.

At first embarrassed by her deafness, she discovered the Sarasota chapter of the Hearing Loss Association of America where she learned how to advocate for herself and others and her insights are invaluable and mentoring to help others has become a passion.

Chery Edwards

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.

Chery Edwards Part 2

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.

Janet Fox

I met Janet just after she received a cochlear implant three years ago. There was a genetic component to her hearing loss. Her brother received a cochlear implant before she did.

She is an intrepid personality who refused to give up even as she was struggling to get the best results.

Activated with a Cochlear Nucleus 6 and wearing a ReSound hearing aid in the other ear, her bimodal hearing was never optimal. I believed at the time, she would eventually opt to get a second cochlear implant.

As her hearing in the HA side declined she was ready.

I asked her to sit down with me to talk about her experiences and her decision to go bilateral.
She also shares her experience with tinnitus and how receiving the first cochlear implant had an effect on it.

Janet Fox Part 2

Janet Fox recently received a second cochlear implant and became a bilateral recipient. This is Part 2, the follow up interview done after her second cochlear implant activation.

Part 1 of her interview was done just prior to her operation. At the time we sat down for that interview it was my stated intention to do another after she was activated with the new one.

Many cochlear implant recipients who are qualified for a second one hesitate for a variety of reasons; fear of losing any residual hearing in their other ear; loss of fidelity of music if they still have any residual hearing and sometimes being in denial, believing and stating that one ear is good enough to get by with.

Janet moved beyond that point, realizing that after more than two years after receiving her first cochlear implant that her remaining hearing was in decline and of no practical use. It was time to take the plunge.

Drs. Wazen and Nayak at Silverstein Institute in Sarasota, who performed her original surgery also did the second. They complied with an unusual request from Janet which she talks about.

Although her activation was very recent, she already sees the results and the improvement. I felt it was time for her to share experience while it is still new. I was also interested in her reaction to her upgrades from having a single side Cochlear Nucleus 6 to becoming a bilateral Nucleus 7 recipient.

She wrote to me in a follow up communication after the interview:

“BTW you can quote me saying, I’ll never take this off, and it’s so great to hear in stereo!”

Sue Smith

As she describes it, Sue had a lifelong progressive moderate to profound sensorineural hearing loss in both ears.

Wearing hearing aids from the age of eight, she struggled but used many of the compensation tricks that are familiar to those of us with a hearing loss.

But she went beyond what we may have done and her story would take hours and provide an encyclopedia of useful tips.

My interest was to have her focus on music, a topic of major interest to many candidates. Her involvement with music and being married to a musician, meant that as her hearing loss progressed, her world was shrinking.

Sue received bilateral cochlear implant surgery and was activated with two Cochlear Nucleus 7s in 2018.

She talks about her experience with music both pre and post activation.

I hope to do a second interview with Sue so she can share her experience of how she managed her career and business without hearing. In the interim, I am glad she agreed to share her knowledge and experience with music.

This interview was done via Skype. It may sound a bit thin but it is clear.

Dr. Loren Bartels

I recently learned that Dr. Loren Bartels had performed a cochlear implant surgery on a five month old child.

He was also the surgeon who performed bilateral cochlear implant surgery on me in December 2015 just before my 65th birthday.
His career with cochlear implants predates the time of FDA approval for them in the United States.

In other words, he has seen and performed surgery and the restoration of hearing through these miracle devices from the start. He talks about his background and the advancement of cochlear implants as well as his own criteria for determining a candidacy. His views on pediatric cochlear implant surgery are invaluable to parents seeking answers.

His unique perspective is invaluable to those starting their hearing journey research. I am glad he agreed to take time on his busy schedule to sit down with me for this interview.

Dr. Vicky Moore

Dr. Vicky Moore is an audiologist and co-owner of The Hearing Spa in Sarasota Florida. Along with being an independent hearing aid dealer, she does evaluations for cochlear implants candidates and is an expert programmer for all three major makes of cochlear implants.

New candidates often want to know about how the audiologist does the testing. Dr. Moore discusses the process from the beginning to end and gives a very unique perspective about activation day.

Her interview covers a wide range of related issues and is a good starting point for your research into your hearing journey.

David Dorsey

We first met David more than two years ago. His high frequency hearing loss was interfering with his job as a reporter and was a strain on him and his family.

He was a through researcher. He wanted to retain whatever natural hearing he had. In his case a hybrid cochlear implant was the best possible solution. A hybrid cochlear implant is a combination of a cochlear implant with a hearing aid component. They are not common and David’s search led him far afield from home until he found a surgeon in which he had full confidence.

His high frequency hearing loss probably started when he was very young. Like many others, he did not realize he had a problem until he was an adult and his story speaks to many of us who lived in denial of our hearing loss.

Happily he received an Advanced Bionics hybrid and he talks about his progress and the changes it brought to his life.

Chris Goodier

Growing up with normal hearing, Chris woke up one morning when she was 32, to discover she had lost her hearing in one ear. The sudden hearing loss was compounded by a progressive loss on the other side.

With no hearing on one side and a series of powerful hearing aid on the other, she struggled to keep her job. But one day, she realized the fight was futile. Her hearing was too far gone.

Being told by a succession of doctors that there was nothing they could do for her or that a cochlear implant was not the answer because the “sounded mechanical,” she adapted a new vocation which allowed her to isolate herself.

Happily she attended a convention of the Hearing Loss Association of America where she was able to collect brochures and information that led her to getting cochlear implant surgery and activated with a Cochlear Kanso processor.

Today she is bimodal, a ReSound Hearing aid on one side and a Cochlear Kanso on the other. Fully functional she has joined the world of sound again.

Kathy Combs

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.

Vinell Lacy

Vinell has a long-term progressive, profound hearing loss. There is a genetic component within her family for hearing loss.

At one point she had to give up the career she loved as a legal secretary as she could no longer use a phone, take dictation and functioning within a conference environment was impossible for her.

She has not received a cochlear implant yet. Although she was scheduled to have surgery, family issues intervened and she has delayed. She has not chosen a company. Her interview is important to those who have delayed for any of the reasons Vinell has cited here.

Her hearing loss has effected every facet of her life and it is poignant that when she is asked what would change in her life, she declares, “Everything!”

OPERATION OPERA

Imagine having a progressive hearing loss and wearing hearing aids from the age of seven until one day when you are 30, all your residual hearing collapses within a matter of a couple of weeks and you go totally deaf. You lose all ability to hear speech and music. Everything is gone. Vanished. Total silence.

It happened to me.

I waited 35 years before getting a cochlear implant because my love of music was so great, all I wanted was to hear music again with the true fidelity I remembered. Cochlear implants were primitive at the time and the priority was to provide speech comprehension. I waited, hoping science would find a cure for my deafness. Eventually, I knew it was time to move on and get a cochlear implant, knowing there was nothing to lose and everything to gain.