WELCOME TO COCHLEAR IMPLANT BASICS
WELCOME TO COCHLEAR IMPLANT BASICS
Being told you qualify for a cochlear implant can be a devastating, overwhelming and at times, frightening.
Devastating, knowing that your hearing has declined to the point where hearing aids will no longer work well.
Overwhelming in the choices and the decisions you have to make.
The thought of head surgery is frightening.
Cochlear Implant Basics is designed to provide support and to help you navigate those choices.
While all hearing losses are unique as our fingerprints, they do have similarities.
By sharing the experiences of candidates, recipients and professional, Cochlear Implant Basics will provide the background and information you can use to begin your own research and be more confident in your decisions.
The interviews have minimal editing. These candidates have walked in your shoes. They provide information based on their own unique experiences. Information you can use on your own hearing journey.
The FAQ section covers most questions. The contact section is there and we are always glad to assist others to get out of isolation and back into the world of sound.
Reminder that Cochlear Implant Basics is not medical advice. Consult your own health care provider.
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.
Totally deaf for 35 years, Richard received bilateral cochlear implant surgery just prior to his 65th 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.
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 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.
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 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.
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.
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.
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 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!”
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.
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 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.
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.
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 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 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!”
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.