Cochlear Implant stories

Anne's Story

Posted in Cochlear Implant stories

In 2013 I had an operation that changed my life in so many ways – I received a Cochlear Implant in my left ear.

 

I have a hereditary hearing loss.  I have some hearing in my right ear and am borderline profoundly deaf in my left ear. My father and grandmother were hearing impaired; my sister, nephew and uncle each wear hearing aids.

Teen violist excited to perform for others with hearing impairments

Posted in Cochlear Implant stories

The Columbus Dispatch  March 30, 2014

Israelle Johnson with Dispatch Instructor Linda Stieg                                                                   

As members of the New Albany Symphony Orchestra began their first rehearsal for an upcoming concert, viola player Israelle Johnson — focused on the complex music in front of her — awaited her cue. The 17-year-old and her fellow performers barrelled through the contemporary Short Ride in a Fast Machine, a cacophonous romp by John Adams with staccato trumpets and unruly drums. The piece might pose a challenge for any player, let alone one who is almost deaf. Between takes, Johnson looked toward a nearby sign-language interpreter, Lisette Tedeschi, who sat translating the conductor’s detailed directives on tempos and time signatures. Johnson is the only hard-of-hearing musician in the upcoming program.  “I was so intrigued by her story,” said Heather Garner, who as executive director of the New Albany Symphony — and a viola player with the Columbus Symphony — learned last year about the Fairfield County teenager and invited her to join the group.   Johnson, who speaks slowly and reads lips but also signs, is skilled.“If a deaf person has music in their blood,” she said, “I want to let that person know you can pick up an instrument.”                                

About the time that Israelle turned 3, her parents discovered the root of their daughter’s prolonged silence: enlarged vestibular aqueduct syndrome, a congenital condition. Caused by fluid buildup in an oversize inner-ear channel, her hearing loss is 76 percent in the right ear and 64 percent in the left. Her hearing could one day worsen or be lost entirely, doctors have said, but there is no way to tell by how much or when. As a young child, she would watch her four older brothers sing along with Christmas carols playing on the car radio. The music was audible to her, but the lyrics were muddy.  On a whim, Israelle at age 11 took up the violin. Her mother initially hesitated to ask Linda Stieg — a longtime Suzuki-trained strings educator — whether she would accept a pupil with special auditory needs. It was uncharted territory for both teacher and student.  But Stieg, who has taught in central Ohio for 26 years, said Israelle “plays better than some of my hearing students. . . . She plays more in tune because she really is working to hear it correctly.” Even with hearing aids that boost her auditory levels to about 85 percent, Israelle ultimately found that a viola’s lower frequencies make the instrument more suitable for her than the violin. 

Like other Suzuki students, she learns melodies by ear; she first listens to CD recordings.Another strategy is more innate: sensing the viola’s tones through its vibrations. The practice is similar to one once employed by another deaf musician: Ludwig van Beethoven allegedly took the legs off his piano to feel the music from the floor.  “Beethoven heard music in his head,” Israelle said. “If he can write music, I can play music."  Garner pointed out a 1924 letter that Helen Keller wrote after touching a radio-speaker diaphragm as a Beethoven selection played. Keller described the “ tones and harmonies (that) conveyed to me moods of great beauty and majesty.” 

Proficiency demands patience and physical stamina. Israelle, who often practices more than three hours a day, has put enough strain on her body that she had to have two neck cysts — caused by the instrument constantly pressed to her throat — removed last year.  A two-hour round-trip commute to attend a mainstreamed academic program for deaf students at Upper Arlington High School, where she plays in the school orchestra, doesn’t sap her energy. “You might do something 15 times; Israelle will do it 150 times,” said Ed Zunic, an orchestra teacher in the Upper Arlington district. “She understands her responsibility: If she’s going to do this, she’s going to do it well.”

Viral cochlear implant videos critique

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The Limping Chicken April 2014, by Emily Howlett, a profoundly Deaf actress, writer, horsewoman and new mum        

Another cochlear implant (CI) switch on has gone viral, reaching widespread coverage not just on the internet forums but across the televised news and papers. One seems to capture the public imagination every so often, despite the fact there are literally hundreds floating around on YouTube and similar sites. It seems to be the ‘thing to do’ these days; film your switch-on session and upload it to the internet. 

But I’m not sure about the message sent out about deafness, and what CIs actually mean to a deaf person.  For example a recent video is being widely reported in the media as the first time the patient hears anything.  EVER. But moments after switch-on takes place, she can understand the days of the week being read to her, knows she is speaking with a Geordie accent and tells the audiologist that the sounds seem ‘too high’… Hang on, wait… Geordie accent?  This is the first time she has ever heard and she can not only speak, but with a recognisable accent?  That’s not a cochlear implant, that’s a miracle. 

Which is exactly my concern; this kind of fantastical reporting is doing nothing to help anyone, deaf or hearing, understand the realities of choosing to have and then living with a cochlear implant. Very few reports say exactly how long it has been since the patient has heard; most imply no hearing at all up until the magic cure.  A video of a more usual switch-on session, unless it features a particularly cute baby hearing mummy for the first time, never hits the big time. 

Although often emotionally charged, the immediate benefit of a cochlear implant is, for most recipients not that astounding. It’s either a return to a slightly different tone of hearing they accessed before, or a completely new and random sense of sound, which takes the brain a long time to process and begin to understand. These are the commonplace videos; the beginning of a long and often difficult journey of auditory rehabilitation.

Nobody wants to put those on BBC News or the front page of the papers, because they’re boring.

Hearing for the first time on Live TV

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March 23, 2014 Yahoo!7 News                                                                                                                        

In an Australian TV first, Sunday Night aired the moment a profoundly deaf father-of-three heard for the first time in his life, live in the studio. Sydney couple Tim and Natalie Nobes, both 44, were both profoundly deaf before receiving cochlear implant surgery and had never heard each other's voices.  The cameras were present when Natalie had her implant activated on Wednesday, March 18, and heard her husband and children clearly for the first time. Tim had to wait a few more days and joined Sunday Night in the studio for his big moment.                                                                        

As a baby Tim had a small amount of residual hearing – would respond to a dog barked or a car horn – but he was 17 months old before his parents realised he was profoundly deaf.  He could hear a dog barking, doorbell, birds whistling, helicopters and jets.  Tim said his first word at 20 months and developed more speech between two-and-a-half and three years old – when he started at The Shepherd Centre for hearing-impaired children and later met Natalie. Natalie’s hearing was lost when her mother, Val, contracted the German measles virus early in her pregnancy. Without hearing aids she hears nothing. “When I hear people talking I hear a mumbling sound which is why I lip read. I can’t hear anything more than 10 metres away.  Some noises under 10 metres I can hear but I don’t know what they are,” Natalie said.                                                                                                                                               

She and Tim have been married for 21 years and have three beautiful kids; Laura, 18, Ryan, 17 and Emily, 12. In October 2013 they announced to their family they would have cochlear implants and the operation was performed at Westmead Private Hospital this year. “I want to be able to hear footsteps so I know when the kids are coming up behind me,” Natalie joked. When Tim finally heard his first clear sound via the device he was overwhelmed. "It's strange," he said. "I need to retrain my brain to understand people with my ears. I'll have to make people cover their mouths when they talk!"

Cochlear implant ambassador kids prove the power of speech to nation's leaders

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Children from across the country, who were profoundly deaf and had cochlear implants, delivered speeches at the Press Club in Canberra as part of the inaugural Power of Speech event, which is aimed at changing perceptions around what a deaf child is capable of achieving   They stood in front of hundreds of adults giving their background, what it is like to be deaf and to have a cochlear implant, what they have achieved and what they want to be when they grow up.

 

10yo Ruby Hughes of Brisbane with her Mum Annie; 6yo Vivek Varghese with Mum Bindu                        

Ruby and Vivek were two of a dozen representing the Hear and Say Centre, Brisbane.  The confidence developed by these Hear&Say graduates was illustrated by Vivek saying he hoped to follow in the footsteps of the scientist who invented the cochlear implant. “I want to join people whose inventions have helped others, people like Dr Graham Clark who invented the cochlear implants that help me hear.”

  

Left: 11yo Isaac McMullen representing Victoria’s Taralye Oral Language Centre; Right 10yo Izaac Coubrough representing WA’s Telethon Speech and Hearing Centre

Karen's Story

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Karen’s Story

My hearing loss was most likely caused from an illness in my teenage years.  However, early on it was not too much of a problem and I no doubt compensated by lip reading so got by well enough.  As my hearing worsened I started to use a hearing aid and eventually I left my job as meetings, the telephone and office life in general became too stressful and difficult.