ALDACon 99 Cochlear Implant Panel

This article provides a synopsis of the cochlear implant discussion held at the recent ALDACon in Arlington, VA.  

Copyright 1999 by: Northern Virginia Resource Center for Deaf and Hard of Hearing Persons 10363 Democracy Lane, Fairfax, VA 22030

October 14, 1999

By Mardie Younglof

Panelists:  Jon Miller, Arva Priola, Wayne Roorda, Jeanne Schneiter, and Edith Shapiro.

Moderator: Peg Williams, Ph.D., Executive Director of Cochlear Implant Club International, Inc.

Each panelist introduced him/herself, giving a brief auditory history, brand of implant, and length of time hearing with the implant.

Wayne: Had the surgery in August 1997 and has the Clarion S.

Arva: Started losing her hearing as a college sophomore, and retired from teaching in 1989 when she became too deaf to continue.  Has had the Spectra 22 (by Cochlear Corporation) for 6 years.

Edith: Had a progressive hearing loss for 20 years.  Was implanted two years ago, but, due to a hospital error, has the Clarion 1.2 electrode array and uses the Clarion S processor.

Jon: Lost his hearing three years ago.  Has had a Clarion S for two years.

Jeanne: Began losing her hearing in her 20s.  Received the first Med-El implant at Johns Hopkins University Hospital two years ago.  She loves her

"easy-to-use processor" because she and her husband travel a lot.

Question: "What has been the greatest benefit of your implant?

Jeanne: "One word: 'everything!'"  Her greatest specific benefit was being able to communicate with her husband.  "We all tell you the same thing: we love it."  Her implant means safety; she is able to hear sirens, can hear her granddaughter at a distance from her on a playground, can hear conversations not directed to her.  "You can't tell secrets when I'm around!"

Jon: "Greater independence!"

Edith: Her first reaction was "free at last!"  She and her husband can talk without his having to repeat.  Cochlear implants, she explained, have different degrees of success; not all implants are successful.  There are situations where she is still hard of hearing.

Arva: She has control of her voice.  The second benefit for her was returning to work; she presently works at the disAbility Resource Center in Fredericksburg.  It means a lot to her to be able to use the phone.  Her implant has given her independence.

Wayne: Echoed Jeanne: "You get your life back!  Without sound, you survive, but you don't live."  His implant turned his life around.

Question: "What aspect of your life has benefited the most from your implant?"

Wayne: Hearing all kinds of sounds while driving.

Arva: Her son said in a newspaper article that when his mother lost her hearing, he lost all small talk with her, but after she received her implant, that changed.  She is able to interpret for others, and it means a lot to her to be able to do so.

Edith: The greatest benefit for her was getting her marriage on a better track.  She likes being able to hear people on the phone and getting their reactions.  She is able to function without being accommodated.

Jon: Being more connected to friends and family.

Jeanne: "Jon sums it up."  She reconnected with people and is free to communicate with others.  The best benefit of all is being able to communicate with her family and her husband's familiy.   Loves being able to joke with people.

Question: "Have you had any problems with either the surgery or your implant?  If so, how did you deal with it?"

Jeanne: Explained that CI surgery is close to the facial nerve and an error on the surgeon's part can result in facial paralysis.  In her case, the surgeon hit a blood vessel, and she had a black eye.  She looked like a "fright mask" for a week.  She also had a minor problem with dizziness, but it soon disappeared.

Jon: Had no complications from surgery, but experienced a slightly metallic sense of taste.  He pointed out that "consumables" have to be replaced-batteries, cord, etc.  The manufacturers ship replacements very quickly because they know users are dependent on their products to be able to hear.

Edith: When she was to have her surgery, she was awakened after being given the anesthesia and told by her doctor that they didn't have the Clarion S electrode array she'd wanted, but she could be implanted with the Clarion 1.2 array and have the S processor.  She decided to go ahead with the surgery and received the 1.2 array and has had no problems with it.  She did forcefully complain to her doctor about the matter.  She never learned the source of the error: the manufacturer or her implant center.  A drawback is that equipment, such as the cable, has to be replaced.

Arva: Had no problems with the surgery, but had problems with communication access at the hospital, and told the audience, "You need to advocate for that."  She uses 17 of her 22 electrodes; 5 had to be turned off because of facial twitching.  "During the first three months you're getting used to the implant and you need mappings.  You don't just sit there with the implant."  All three of her kids were involved with her rehabilitation process.  People ask her why she didn't wait for newer technology, and her response is that "I didn't want to lose my family."  Hospitals and CI centers don't tell you all you need to know, but you can learn from other users.

Wayne:  Had a sore throat and mouth after his surgery because of entubation.  Four days later, he became very dizzy for a week.  Other than a slight black eye, he had no other problems.

Question: "Tell us about something you did post-implant which you would not have done before getting the implant."

Wayne: Listened to music on his son's stereo system.  His kids were flabbergasted to see Dad listening to music.

Arva: The most recent experience she had (which she wouldn't have done before getting her implant) was traveling to Canada by herself.  She had no problems on that trip.

Edith: Listens to the weather channel, which isn't captioned, and understands explanations of weather conditions and forecasts.

Jon: Listened to his car radio and heard once again those familiar voices. He listened to a program called "Soundprints," about cochlear implants and his surgeon was interviewed on it.

Jeanne: "You aren't welcome as a volunteer if you can't hear."  She has expanded her volunteer work and is able to participate in large groups.  She also travels alone. She went alone to Seattle and enjoyed the trip; handled meals, tips, phone calls, etc.  Is a CPA specializing in taxation and has to get 40 hours of continuing education per year.  She now can attend classes with the "most inconsiderate instructors" and can cope.  Is able to follow instructions in computer-use classes.  She also took on more responsibilities at work.

Question: "With your implant, what kind of listening situations still cause you the greatest problems?"

Jeanne: At a church retreat in the mountains recently, she had to be "creative" with her device in order to cope with understanding people's speech at different distances from her.

Jon: His experience is the same as Jeanne's.  Background noise causes trouble for him.

Edith: Her car radio is hard to understand.  She wants to be able to get traffic reports in New York City, but has trouble understanding them, although she hears weather reports just fine.  In large groups she uses an FM listening system if she feels the need.  There are some people she cannot understand no matter how hard she tries.  Very noisy situations are also difficult.  She explained that CIs do not give us normal hearing, but they are nevertheless a "miracle."

Arva:  Agreed with Edith that implants are a miracle.  She now functions as a hard of hearing person.  At the CICI convention last July, she was in a group of 4 or 5 implant users in a noisy place, and all of them were using their auxiliary miniature microphones clipped to a cup, and everyone was understanding everyone else.  Cited the need to accept that certain situations will be difficult.  Hearing people have problems hearing sometimes, too.

Wayne: His worst situation is a noisy room.

Peg Williams (moderator): She, too, has trouble hearing in noisy rooms.  When she was talking with Rocky Stone in a noisy room, he was using his auxiliary microphone and heard her just fine, while she was struggling!  "Your problem hearing may not be you.  The world is getting noisier and noisier; music is piped in everywhere."

Question: "Does the implant help you to enjoy music again?  Tell us about your experience with music, which is a cornerstone of all cultures."

Jeanne: "The saddest day in my hearing loss was the day we sold my piano."  After her implant, "the music situation was the slowest thing to develop."  You must allow your brain time to accept the new signals.  As time passed, she heard conversations beautifully, but music still sounded awful.

Rediscovering music is a "breathtaking experience."

Jon: Had a similar experience.  He is a pianist.  He appreciates music more now, but said that what we hear with our implants doesn't always match our memories.  People who were deaf for a long time are happy with what they get.  The simpler the music is, the more he enjoys it.

Edith: Agreed with Jon.  The only music she actually enjoys hearing is what she remembers before losing her hearing.  She knows she is hearing what she remembers.  Music with an implant sounds better that it did with hearing aids.

Arva: Was thrilled to be able to hear the sounds of Christmas just after her hookup.  She has recently begun picking up words of a solo sung at her church.  

Wayne: Listens to all kinds of music, but doesn't care for the more modern rock because he is not accustomed to it.  When he listens to classical music, he can, within seconds, identify the composer.  It has been a real comeback for him, but he added that everyone responds differently to music.

Jeanne: Emphasized that abilities come with time.

Arva: When she upgraded her Nucleus 22, her life changed because she then was able to use the phone.  If she'd waited to get an implant, she'd have lived in isolation.

Question: "Does your implant help you cope better with family gatherings?

This aspect of life is a common problem for people with hearing loss."

Jeanne:  Her family says they can't get over her being able to hear again. She and her husband are very close to all their relatives.  Her younger sister, who has a hearing loss also, said to her, "I'm so afraid I won't get bad enough to get a cochlear implant!"  Jeanne loves being able to talk to her son in California on the phone.

Jon: For him, family gatherings are easier.  Since half his relatives are under the age of five, things get really noisy.  Four kids can be screaming while he's talking, but it's much easier for him than before.

Edith: Used to sleep through family gatherings!  She may still miss some stuff, but doesn't get sleepy!

Arva: Her son said he wished she had two cochlear implants!  She and her family can have casual conversations and discuss different topics.

Wayne: It's easy for him to interact with his sons.  He can carry on conversations with them, even in the back seat of the car with no problem.

Audience question: "How hard is it to get outside funding for those who can't afford to pay for an implant?"

Edith: Medicare pays for it.

Wayne: It depends on your insurance company.  If you are self employed, it may be more difficult to get coverage for an implant.

Peg Williams:  Asked Linn Tearney, who works with insurance companies in her job at Cochlear Corporation, to comment.

Linn: Medicare covers 80%, and patients often pick up the tab for the remaining 20%.  But often supplementary insurance will also pick up the tab. Sometimes Medicaid will cover the cost of an implant.  Some private policies balk at paying.  She has had to do a lot of appeals.

Peg: Veterans Administration pays for implants for veterans.  In a CICI membership survey, they found that 93% of CI users had at least some insurance coverage.  There are no private funding sources that she knows of.

Audience question: "What about rehabilitation after surgery?"

Edith: There aren't many rehabilitation counselors.  It's a new thing.  In New York, they give you as much as you need.

Arva: Is a peer counselor for people with cochlear implants.  She has gone to people's homes to listen for environmental noise, such as washers, driers, refrigerators, microwaves, etc.  She helps clients with rehabilitation, such as phone use.  She tells people what to expect when they pick up the phone. The more a CI user gets out with the public, the more s/he will use the implant.  You need to get out.

Edith: When she practices on the phone with her rehabilitation counselor, she is able to relax more, is not as uptight.

Audience question: "Are implants interchangeable among the three brands?"

Edith: NO!  The results are the same regardless of the brand you select.  You need to investigate each brand yourself.

Arva: Your brain trains itself to listen to the brand you have.

Wayne: Pointed out that Edith has a Clarion 1.2 electrode array with a Clarion S processor.  Even though he and Edith both have Clarion S processors, they would not be able to use the maps in each other's processor.

Jeanne: All CI manufacturers retrofit product upgrades to the internal components of our devices.  Thus, we don't need to be reimplanted.

Arva: NEVER try out a processor belonging to someone else!

Audience question: "In using the phone, do you use a patch cord?  Is there a cell phone that works with cochlear implants?"

Linn Tearney: You are not cheating by using accessories with your devices.

Do whatever helps you.  She uses a Dynametric adapter on the phone at work because it cuts out the surrounding noise.  You can practice phone use by dialing 800 numbers.  There is no stress because there's no live person on the other end!  Motorola StarTac has a jack to plug a patch cord into.

Edith: Another option is to use a telecoil pickup.

Arva: There are amplified phones, voice carryover phones.

Mardie Younglof: Some CI users like the Ameriphone XL-30 phone.

Sandy Spekman (audience member): Still uses her hearing aid in the other ear on the phone.  She bought a splitter at Radio Shack, a Duo-mini jack, and a mini jack amplifier for her speech processor.  It's much like the PockeTalker.

Audience question:  "What are mappings?  What is so important about them?"