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Pacific Northwest Cochlear Implant Club Newsletter

The official newsletter for the Pacific Northwest Cochlear Implant Club.

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Volume 8 Issue 1 Fall 1998

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CICI Convention

Manhattan Beach, CA.

July 23-26, 1999

The sunny shores of Manhattan Beach, California, beckon you to experience an unforgettable weekend at the 1999 CICI Convention! If you have never attended one, this is your chance to find out what they are like. CICI only hold their conventions every two years. The last one was attended by over 800 people.

So let us all mark our calendars now so that we can plan our vacations accordingly. The guest room rate is $98 per night for up to four people per room (Friday p.m. to Monday a.m.)

There will be special children events so you do not need to leave the children home. This will be a fantastic opportunity to meet and talk with other parents who have children with implants.

If you are an adult with an implant, or thinking of getting one, it is an opportunity to meet and talk with hundreds of others with implants. Learn what patch cords they use. Learn of the different telephones and assistive devices that help them to hear better.

How do you register? If you are a member of CICI, you receive their fantastic magazine "Contact" which will be carrying all the details. If you are not a member, now is the time to join. Cost is $18 for an individual, $30 for a family, and $60 for Professionals. If you need an application blank, let me know and I will send you one. Address is on back page. You do not need to be a member of CICI to receive this newsletter, but it is highly recommended. You will need to be a member of CICI to attend the convention. So why not join today and not miss any issues? Join today!!! You will be glad you did.

Letter in Newsletter Gives me Courage to Proceed with Nucleus 24

By Carole Odell,

Gig Harbor, WA

I am now 56 years old. I started losing my hearing in my mid 20’s. For the first 20 years or so of gradually losing more and more sound, I tried all
sorts of hearing devices. Nothing worked for me. I’ve been told it’s
impossible to amplify sound if there isn’t any hearing left to amplify. Makes sense! By November of 1994, my hearing had deteriorated to the point it was near to impossible to talk with most people. I still could hear very low sounds with one ear, but the other ear was, for all practical purposes, deaf.

My husband did some detective work and found that the University of Washington had a program for improving conversational skills via speech reading. This
was my first contact with Dr. Sue Sanborn at University of Washington’s Speech and Hearing Clinic. During these first visits, Dr. Sanborn mentioned that I might be a candidate for the Cochlear Ear Implant. I’m not the brave type, and the very thought of an operation by choice, scared me. I did do better with my newly learned conversational skills, but as the years passed, I continued to lose more hearing, and became 95% dependent on speech reading for any kind of communication.

December 1997 found me again at U of W with a new hearing test that was a disaster. My hearing had continued to deteriorate. Again, Dr. Sue approached the implant subject and informed us of the new advances in implants, particularly Cochlear Corporation’s Nucleus 24. We also received a

Today I went for my 4th mapping. I could hear 80% of the sentences in the testing booth. Before the operation, my score was 0. I feel I’ve been handed
back my life. Anything is possible. I’m driving all by myself to visit my
Mother in California next week. This trip would not even be a consideration
before the implant. I was afraid of needing road assistance and not being
able to obtain it. Now, I’m able to understand most people the first time,
and if I ask for a repeat I get it all 99% of the time. I’m told it will
continue to even get better!!

Gordon, I want to thank you so much for your obvious concern with all of us needing hearing help. Without your newsletter, I would never have met Dorothy who has become such a good friend, and even worse, may have not gone ahead with the operation.

Three Year Old receives Clarion S-series

By Susie Jones, Boise, ID.

Thanks for your work on the Cochlear Implant Newsletter! It’s encouraging and comforting to follow others’ journeys.

Our son, Parker, was implanted in November 1997, at age three. He received the Clarion S-series implant at Oregon health Sciences University in Portland. Dr. Alexander Schleuning was his surgeon.

Parker has a profound hearing loss and wore hearing aids for a year and a half before implantation. With the help of the aids, he had some hearing in the speech range, and had begun to develop some speech. However, his language skills were progressing slowly and we felt his window of opportunity for language acquisition was closing. We wanted to give him the best tools available to cope in the hearing world, and we felt that a cochlear implant could better help him reach his potential.

The initial hookup was in January, 1998. Parker was very excited about his new processor and carrying pouch. He willingly wore the headpiece during mapping and throughout the first evening with no adverse reactions. It took some bribing the second day for him to cooperate, but we left the office with the device turned on! However, for the next week, Parker and I had some power struggles about wearing the device. He wore it as long as it was turned off., but immediately removed the headpiece when I turned it on. So.. I learned to be patient, and Parker finally gave in.

He now wears the implant during all waking hours. He no longer responds when he ONLY wears his hearing aid in the non-implanted ear. His brain seems to have accepted this new electronic sound in favor of what little acoustic hearing he had. His most recent audiogram shows spectacular gains from just four months of use! He is hearing at 15-30 Db through 6,000 Hz. Needless to say, his speech and language have also improved greatly! By the way, we have been using Cued Speech with Parker for 1 1/2 years, and we think it is the best communication mode to use with Cochlear Implant users. What SOUNDS they cannot hear, they can clearly see and process.

We owe a great deal of gratitude to Parker’s professional teem: Dr. Schleuning, Don Plapinger, and Sherri at OHSU, and Alina Mills, SLP, in Boise.

Returned to the Land of The Hearing With

Nucleus 24

By Nancy Harvey,

Mercer Island, WA

Nancy Harvey reporting from the Land of the Hearing. It is incredible how much of life I missed without the implant. I can participate in small talk with strangers in casual conversations on the weather and the color or a car or what color a stranger painted her garden furniture! Even hearing squeaky hinges is a delight. I am on a first name basis with the WD-40.

We implantees are a "special group". We can show others what wonderful things they should be thankful for each day. Instead of isolation we are now part of a noisy humanity that throbs and thrives with strange and squeaky noises. We can look back on the Land of Silence as a learning ground of important lessons of priority and focus. This learning pointed us the way to development our lip-reading skills and situation awareness. Sometimes we read wrong but it honed our humor and our love of laughter. I leave this Silent Land with many insights into living life at the fullest.

Hearing babies cry becomes music and even the noisy computer keys are to be cherished as I return to the hearing world. People have been so helpful . Much praise and thanks go to our professional helpers. They have earned their "wings". Wing Awards go to all of the Angels : Dr. Gates, Jenny Stork, Dr. Sue Sanborn, and Kevin Franck. Without all of their professional dedication this new adventure would not have been possible. I am indebted to each of them for their contribution to the success of the implant.

The Hearing World is Eureka (aka known as the Place to be). Each day progress is made and words come alive on the radio without the lip-reading skills. Now I can understand the new language that resembles speech under water and parse out perhaps 100 words. Radio advertisements are "guaranteed or your money back". The words don't all come together at this point, but I am confident the puzzle pieces will soon fall into place. At an outdoor auction, I discern the going once, going twice, sold for seventy five dollars to Mary.... and then faint out with garbled understanding.

As I close this letter of thanksgiving and praise to God, there is sheer awe at the new technology. I encourage any of you who are eligible for this procedure to talk with some of the "success" cases. It is a given parameter that nothing was guaranteed from this procedure. What in life is guaranteed? The Implant is worth the gamble. Giving the rehab your all, you cannot reap less than all it can give you. Go ahead,

throw your heart over the fence, your "hearing" will follow!

Let's dance. I was deaf, but now I hear!

Child, Three Years Old

Receives Med-EL

By Eleanor Huebler, Seattle

Claire Huebler, BD 7/22/95

Parents: Jeff & Eleanor Huebler Seattle)

Surgery: June 12th at Virginia Mason.
Surgeon: Douglas Backous

Aural therapist & audiologist: Hyla Dobaj

Turn-up: July 2nd

Device: Med-El Combi 40+

I believe Claire was one of the first 5 children in the US to be implanted and participate in the new pediatric clinical trials for the
Combi-40+.

Claire is doing wonderfully. She has been wearing her implant all day long since the 2nd day. She already responds to her name much more consistently, tells Mom & Dad to shhhhhh often and is more aware of environmental sounds. She is imitating some sounds automatically such as woof, woof and boom, boom (4th of July) when we tell her these are the sounds dogs and fireworks make. She can hear Dad whistling and her baby sister, Emma crying. The most striking thing to me is that she hums and vocalizes to herself all the time especially when reading, coloring, generally when she is playing by herself. She is certainly using her voice much more than she ever did pre-implant. Our only regret is that we didn't do the implant sooner!!

Do you have a child with an implant? Please share your story with us. The little thing that you say might just be the word another parent is looking for. As you are aware, parents are very concerned about doing the right thing. Send me an e-mail or write a short note and I will publish it in the next newsletter.

Med-EL Makes

Speech-Reading Easier

Adam Kushner, Edgewood, WA

[As told to Gordon Nystedt]

Adam Kushner visited my home on January 28th. At that time he stated he was not interested in the implant. His speech was quite loud and we were unable to carry on a conversation unless I typed out everything I was saying. We compared notes and noted how much his life was like mine before I was implanted. Before he left my home, he decided to proceed and see if he would qualify. I called his implant center and set up an appointment.

Adam had surgery for the Med-El at the Virginia Mason Medical Center in April. Dr. Douglas Backous was the surgeon. His Audiologist was Carol Brazil. He received his processor on May 20th.

I did not see Adam again until June 30th. What a difference!!! His voice had toned way down. We did not have to sit by the computer at all. He understood what I was saying!

He states he has had six maps up to that point and had another appointment for the 4th week in July. He further states that he understood Carol Brazil, his audiologist, just as soon as she turned the processor on. But he was concerned because he has not been able to use the phone and does not understand the TV. I informed him that few people understood the TV without captioning, especially sports programs or any program with background noise. I also informed him that many people cannot use the phone at the beginning – that it does take a lot of practice and adjusting to the implant.

At this point he is not wearing it all day. I urged him to wear it more and more until he became adjusted. I also advised him that things, like the telephone, might become easier as he adjusted to the processor.

He wanted to know why he did not get a Telephone cord like I had. The Med-EL is still an experimental device and all cords and attachments must be approved by the FDA. Darla Franz, Med-El Representative, has informed me they are investigating cords and will inform their clients as soon as one has been certified.

Adam wished to express his appreciation to Dr. Douglas Backous, Carol Brazil, his audiologist, and everyone else at the Virginia Mason Medical Center who has been involved with his surgery and now with his rehabilitation.

After seeing Adam in my home, I have every hope and confidence, that with the proper usage and practice, that Adam will once again regain his place in the hearing world. He has told me he plans to attend SHHH meetings this fall. Way to go, Adam!!!

Attorney Enjoys CI24

By Brian D. Sheridan

Ishpeming, MI

Thanks for your kind letter of January 11 welcoming me to the Club. I’m in the Upper Peninsula of Michigan, which is quite a ways from your base of operations but I am, as far as I know, the only adult implantee within 150 miles. So I have to find my fellow implantees where I can!

I was implanted with the CI24 at the University of Michigan in Ann Arbor in January of 1997, and activated a little over a year. It’s been a wonderful year, for sure! I can now use the telephone on a regular basis, go to court and depositions (I’m a lawyer), and above all function and communicate with my family and friends.

My wife and I went to the CICI conference in Sturbridge last year and learned a lot and enjoyed meeting other implantees and spouses, and also meeting some people in the flesh that I had corresponded with for a period of time pre and post implant. I was privileged to be part of the test group for the Esprit ear-level processor at the time. I subsequently had to give it back when the test ended. My impression was that it was "not ready for prime time", but when it is, it will be an enormous convenience. No more wires or boxes . It was so natural that I inadvertently wore it into the shower the first morning I had it, realizing my

mistake only when I heard the water rushing (for the first time), and then carefully backing out.

I am looking forward to trying the BEAMformer when it becomes available for the 24. [Editor’s note: I talked to Cochlear people at the SHHH Convention in Boston this year, and as of this time, there is no decision on making a BEAMformer available for the Nucleus 24.]

I read somewhere (can’t lay my hands on it now, but I think in one of your newsletters) about implantees recommending Audex portable phones. Are they talking about cordless phones or cell phones, or both? Do the Audex phones have a patch cord connection to the speech processor? If not, why is Audex better and an off-the-shelf brand? I can use a cordless (900 MHz) phone in the house now with some success, but haven’t tried out a cell phone, although I would like to.

[Editors Note: Several Implantees in our area have the Audex Cordless phone. Most feel it is one of the best phones they have ever used with the implant. Audex has both a cordless phone, as well as a cellular phone. They have a jack built into the headset so you can direct connect the phone to the processor with a patch cord. They have a patch cord that works very well with the Nucleus 22 that does not have the Audio mix. In my processor, I do have the audio mix. But when I use the Audex patch cord it cuts off my head mic. Audex is trying to develop a cord that can be used and not cut off the audio mix. When I hear they have it, I will let you know. Also those that have tried their cell phone tell me it works very well with the implant. If you are interested in either of these products, I recommend you call Audex and find the dealer nearest you that sells both phones. One thing you might remember, is that when Audex came out with the phones, they had one phone that worked well with both implants and hearing aids. Now they have developed two phones. AT the SHHH convention in Boston, I told them I would still want one that is compatible to both as I have hard of hearing people using my phone. They said you can still get the phone that is compatible for both at the same price but need to ask for it. You can contact Audex at Phone 1-800-283-0716 or E-Mail: vbeatty@iamerica.net or sherio@iamerica.net ]

Back on the Telephone With the Nucleus 24

By Arch Roberson, Meridian, ID

Thanks for keeping track of me. My implant operation went off as planed April 22nd at the University of Utah and it was a snap, no problems at all. Dr. Shelton is just a great guy and an excellent physician who did a superb job from evaluation
thru implant. There was very little pain, no nausea or headaches, I had a little taste disturbance and dry mouth which was predicted, but that's gone now. I felt like I had a bad bruise after the operation, that's about the best description I can give it. The insertion went so well that Dr. Shelton predicted the results would be very good at turn on and he was right.

Marsha McCandless turned me on May 28 and as we started thru the procedure of setting the processor, she told my wife that I was just doing wonderful. (speaking of wonderful Marsha falls in that category) When that mapping session was over Marsha, my wife, and I just sat and talked for a few minutes. Words can't describe how I felt at that point. When we got home from Salt Lake City I called my daughter in Eugene Ore. on the phone, then she called me back the next morning just to make sure it was really true. I was disappointed with the phone
adapter at first because I was having trouble understanding some people, but
discovered later part of the problem was the telephone and not the adapter.

My second mapping was June 12 and it went every bit as well as the first one. Marsha made some adjustments to the processor , and then tested me on open-set sentences, I scored 88% recognition on the first set and 99% on the second set. The decibel level, at which I begin to hear sounds, just blows me away, I can hear clocks ticking and crickets chirping. The hard drive on this computer sounds like a harvester. I told my wife I almost hear too much but I love it.

The third mapping was June 30, more adjustments, and by this time the CI24 has been approved by the FDA so tests weren't required, but Marsha tested me anyway on regular short sentences. She says my progress is fantastic and just wanted to demonstrate that to my wife. I scored in the 80s on that test. Bells are beginning to ring now instead of the rattle sounds I heard at first. I can pick up a few musical sounds at times and even understand most of the newscasts on television.
The best part of this whole ordeal is I can talk to my wife and family again and run errands, etc. As some of your readers have said, it's not like having normal hearing, but I can tell you it sure beats the alternative. I'm so thankful that we have people like Dr. Shelton and Marsha and the Cochlear Corp. who can help us get back to normal living. Thanks to you again for making all this information available with the news letter.

Congratulations

Congratulations to Dawn Pomeroy, Chehalis, WA. Dawn is the first person to receive the Nucleus 24 at Swedish Hospital in Seattle. Her surgery date was July 15th and was performed by Dr. Charles Mangham of the Seattle Ear Clinic. Her Audiologist will be Jennifer DeCastro and Tristan Holmberg.

Congratulations to Sarah Marker, Manson, WA. Sarah is 15 years old. Her surgery date will be August 11th and will be performed by Dr. Charles Mangham, Seattle Ear Clinic at Swedish Hospital. She will receive the Nucleus 24. Her Audiologist will also be Jennifer DeCastro and Tristan Holmberg.

Congratulations to David Ferguson, Fort Pierce, FL. David was implanted on July 7th by Dr. Thomas Balkany at the University of Miami

David Selected the Med El Combi 40+. He has experienced some dizziness, but is otherwise doing fine and is now awaiting turn-on Date. He learned about us and the implant from one of our readers and implantees, David Burlingame, Bremerton, WA.

We hope to have all of their stories in our next newsletter.

Congratulations to Linda Brown, Kennewick, WA. Linda states she was implanted in Spokane by Dr. Neil Giddings a year ago. She received the Clarion and her Audiologist is Laura Ortmann. We hope to hear more by next newsletter.

Nucleus 24 Receives

FDA Certification

The Nucleus 24 has been certified by the FDA for use in adults and Children as young as 18 months. What this means is that most of the implant centers that were offering the Nucleus 22 are now offering the 24. Several of you had told me you were waiting for your Implant Center to offer the Nucleus 24. Now your wait is over!!!

During the certification period they were offering the new implantees both the body and the behind-the-ear (BTE) processor. If you are contemplating the Nucleus 24, I would check with the implant center and see if they will still be offering you both of the processors. I will have more word on the BTE after the next article by Catherine Clardy.

Behind The Ear Processor

By Catherine Clardy, Buhl, ID

I received my body processor & was turned on last September. It was my constant companion until the middle of April when I got the BTE. I fell in love with the BTE at once. It was more like my last hearing aid. I had lost all of the bass tone many years before. The high pitches were more normal to me. I love the smallness of the BTE system and the ease of wearing it.

I seldom use the telephone so don't mind having to switch back to the body processor to hear when I do use the telephone. I seldom use any of the other patches & am beginning to hear more of television & music with just the BTE. I am having problems with batteries but hope to get that straightened out soon. Some of the batteries last just 24 hours but I have had them last for 10 days. I have been told that I might possibly be able to hear over the telephone 1 day in the near future with the BTE. I can already understand some of the conversations now. I recently attended meetings of CICI & was able to fully understand the entire process the 1st day. Unfortunately the next day & a half weren't as easy. I feel much freer with the BTE. I know it isn't for everyone but it is my favorite. Either one of the processors sure make life easier for me. Would be at a loss if I didn't have them.

[Editor note: In time they do expect to have a boot so that you can plug the phone and assistive devices into the BTE. But they are not there yet. Hopefully, the implant is just the beginning! Now we need to get out of our isolation and back into circulation. Many times an FM or Infrared can be very beneficial at a church service, an SHHH or other club meetings. So if you do have to make a choice between the BTE and the body processor, I urge to take more than cosmetics into considerations. Do you want to go to movies and use Infrared? Do you want to talk to your friends in a comfortable way instead of trying to hold the headpiece to the mic? It would be nice to have both processors. That way you could wear the one that would suit your needs the best.]

Dennis Clardy Now on CICI Board of Trustees

Dennis was elected to the CICI Board at their annual meeting in Toronto. The term is for three years. I hope some of our other readers would like to join him. If you are interested in serving on the Board, please let me know and I will put you in touch with someone. The next Board meeting will be in California during the Convention. If you have any suggestion for Dennis or would like to know more what serving curtails, contact Dennis via E-mail: clardy_consulting@email.msn.com

Dennis states; "CICI is a growing organization which just opened a permanent Washington DC Office and hired full time Executive Director. The next several years will be critical for the organization as it ramps up from a small all volunteer organization to a National operation. I hope to help in its endeavor to become that Organization." Thanks, Dennis for being willing to serve.

Utah Cochlear

Implant Program

By Marsha McCandless, Audiologist

Hope this is not too late for the next newsletter but things have been very busy here.

First, the Utah Cochlear Implant program is now involved in clinical trials for the Med-El device, both for children and adults. We have implanted the first child in the United States and will be doing his initial stimulation next week. We'll keep you informed of this child's progress.

Also, our center put on the first NECCI conference for training teachers and other professionals who work with cochlear implant patients. The topics cover candidacy, devices and how they function, troubleshooting devices, and rehabilitation methods. Dr. Clough Shelton (our team surgeon), Marilyn Madsen (our SLP/teacher of the deaf) and myself put on the conference. We received support from all three implant companies (Cochlear, Advanced Bionics and Med-
El). Claudia Anderson from Audio Enhancement also presented information about the new portable sound field speakers that many implanted children are using in their classrooms to improve the signal-noise ratio.

In addition to the 2 1/2 days

information presentation, we had an evening social for current implant users and perspective implant candidates. It was very well attended and reports back were that the participants acquired a lot of new and useful information. The patients enjoyed comparing experiences and also had an opportunity to talk with the various manufacturers clinical representatives.

Our Nucleus 24 patients continue to perform extremely well and we are fitting the ESPRIT (BTE speech processor) on many of them as well as the body worn unit. Patients like the convenience, although most prefer the body worn unit for its flexibility in use with ALD's. We have begun the advanced encoder study on the Nucleus 24 adult patients.

If anyone has questions about any of these issues, please have them contact me at the University of Utah at (801) 581-8915.

Gordon L Nystedt

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