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Pacific Northwest Cochlear Implant Club Newsletter

The official newsletter for the Pacific Northwest Cochlear Implant Club

Volume 5 Issue 2
Winter 1995-1996

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Cochlear Implants have changed the lives of both adults and children. Please read their stories in this issue.

Cochlear Implant Meeting Coeur d'Alene
Self Help for Hard of Hearing People (SHHH) is presenting a program on Cochlear Implants. The meeting will be Saturday December 16th from 9:30 to 11 a.m. at the Kootenai Medical Center, Classroom 1, Intersection of Ironwood Drive and I-95 in Coeur d' Alene.

Guest Speaker will be Dr. Giddings, Spokane Ear, Nose, Throat Clinic. Rocky Stone, founder and previous Executive director of SHHH may also be there. Rocky has an implant. There may be people attending this meeting who are interested in an implant. If you have an implant and live in Eastern Washington or Idaho, and can spare a few minutes of your time, I urge you to attend so people interested in implants can see you in action. You do not need to be a member of SHHH to attend this meeting.If you have any questions on this meeting, please contact John Centa, Regional Coordinator for SHHH. His phone number is 208-772-3033 or E mail jmcenta@aol.com.


Join CICI Today
If you are not a member of National Cochlear Implant Club International, I urge you to join now. You will receive their magazine CONTACT four times a year. Membership dues are $18 for individual and $30 for family. Make your check payable to CICI and mail to CICI, PO Box 464, Buffalo NY 14223-0464. If you join prior to December 31 you can save a few dollars. Individual is $15 and family membership is $25. Either way you are getting a bargain. I hope you will join today.


Oregon State Medicaid Denies Child Cochlear Implant

For those of us who belong to CICI, it was a real shock to read there latest issue of Contact and discover that Oregon State is the only state in the nation that does not pay for Cochlear Implants.

Eric Miller is 3 1/2 and lives in Salem. Following is a quote from CONTACT: Eric bagan losing his hearing at age 10 months and by age 2 1/2 was a candidate for a cochlear implant. Eric qualifies financially for assistance under Medicaid and in every other state would be qualified to receive a cochlear implant though Medicaid and the rules governing the EPSDT, Early Periodic Screening Diagnostic and Testing program. However, in 1994 Oregon received a waiver of the Federally mandated Medicaid rules to establish a model state health care delivery system known as the Oregon Health Plan. This plan excludes cochlear implants. The Irony of this situation is that if Eric had lost all his hearing just a little earlier, before the restructuring, he would have been able to get his implant.

Since this newsletter goes to many people in Oregon, I am urging all of you to become involved. It is unbelievable in this day and age that a state agency would deny a person the right to hear.

If a person had lost its hands or feet, would the state of Oregon deny the person a prosthetic device or artificial limb?

All of us who have had hearing, tasted the deaf world, and returned to the hearing world through the miracle of the cochlear implant are dumbfounded how anyone could deny another person the ability to communicate. Not only implantees but the families of implantees can testify to the value of the implant in family life.

What can we do? I urge all implantee and their families and friends write in and let the department know the benefit of the implant, not only on the implantee but on the rest of the family. It is important that everyone in Oregon become involved. Talk to your friends in SHHH, AG Bell and ALDA and tell them what has happened.

WE need to educate the people throughout the state of Oregon concerning the benefit of a Cochlear Implant. A good way to do this is get articles in your local newspaper as well as on TV. Try to arrange an interview so the general public can see the powerful effect the implant had on the life of everyone involved. Then in your interview, let the public know about the policy in your state and urge all people to write in.

Some of you were able to obtain a job, or a better job, as a result of the implant. Be certain Medicaid is aware of these facts.

Write to:
Oregon Health Service Commission
Attn.: Paige Sipes-Metzler, DPA
800 NE Oregon ST. #17 Suite 640
Portland, Oregon 97232

Please send me a copy of your letter as well as any press coverage you are able to generate. No one should be denied the right to be able to hear any more than a person be denied the right to have vision or be able to walk. Very few understand the importance of hearing in a person's life. It is up to us to educate them. Please do not sit back and let someone else do it for you. Each of us must do our part to be certain no individual is ever denied the right to hear. Please do you part to help your fellow citizen. Let them know we care. Thanks for your effort.


New Pediatric Cochlear Implant Program At Children's Hospital
by Jill Y. Bargones, Ph.D.,CCC-A and Susan J. Norton, Ph.D., CCC-A

The Pediatric Cochlear Implant Program was established at Children's Hospital and Medical Center in 1993. This is a comprehensive, family-centered program for children with profound hearing losses and their families. The Cochlear Implant Team is composed of professionals who specialize in working with children and families. We believe that obtaining a cochlear implant for a child is truly a family affair. The Team works with all families who express an interest in cochlear implants to decided whether or not a child and their family are candidates for a cochlear implant. Once a decision to obtain a cochlear implant is made, the Team works with the family to ensure that the process is successful. The impact of the cochlear implant on the child and family are closely monitored. This involves regular evaluations of the child's speech, language and hearing with the implant as well as monitoring of the child and family's social-emotional health and well-being. Once a child receives an implant, it is important that the child participate in individual auditory and speech training. A rehabilitation program is offered at CHMC for interested families. In addition, The Cochlear Implant Team works closely with the child's teacher and other professionals involved with the child. In-service training and participation in IEP meetings are available. The goal of the Program is to work with families to develop and maintain good communication and psycho-emotional health and well-being for all family members.

Two cochlear implant options are currently available through the Pediatric Cochlear Implant Program at CHMC. The Nucleus 22 Channel Cochlear implant system was approved for use in children in 1990 and has been implanted in more than 4000 children world wide. In addition, a new cochlear implant system, the Clarion, is currently undergoing clinical trials by the FDA for use in children. The Pediatric Cochlear Implant Program at CHMC is participating in the pediatric clinical trials of the Clarion cochlear implant. That means that this device is available as an option for any child receiving an implant at CHMC. The clinical trials for the use of the Clarion by adults was recently completed and an FDA panel has recommended that the device be approved for use in adults. The procedures for determining if a child is a candidate for a cochlear implant and the basic surgical and rehabilitation process are the same for both the Nucleus and the Clarion. The devices differ in the parts that are surgically implanted and the speech processing strategies that are coded in the external part work on the body.

For more information about the Pediatric Cochlear Implant Program at CHMC or for information about the Clarion Cochlear Implant System, contact Jill Bargones at Children's Hospital and Medical Center, 4800 Sand Point Way N.E., P.O. Box 5371/CH-78, Seattle, WA 98105-0371 or call (206)528-5118 (voice or TTY).


Newly Implanted 7 Year Old Child
by Cindee Chapman, Mother, Seattle, WA

My son, Cameron, was implanted with the Spectra 22 on June 14th, 1995 and hook up and mapping took place on July 26th. Cameron had the cochlear implant done at Virginia Mason Hospital in Seattle. Dr. Langman performed the surgery which was a huge success. All 22 electrodes were implanted. Dr. Suzanne Quigley and Carol Brazil did the mapping. Cameron was hooked up much faster than anticipated and has progressed beyond expectations. I am so happy that Cameron was able to have this procedure! He is already saying a few words and is learning to distinguish between noises that are too soft, too loud, or that are just fine! One day last week as we were in the living room reading a book, the telephone rang. Cameron signed "telephone", I said yes it is the phone. I went into the kitchen to pick up the phone at the same time Cameron went and got the other phone and said hi. This would not have been possible if he didn't have the cochlear implant.

I am glad that we had the implant done at Virginia Mason Hospital. I can't say thank-you enough to the wonderful caring and loving staff there. Cameron's implant has opened up the whole new world to him. This year he is attending an oral program at Ridgecrest, in the Shoreline School District. If you are considering a cochlear implant, I highly recommend checking with Virginia Mason. Cameron continues oral therapy with Carol Randall and both of us appreciate her support. Having a cochlear implant was the best thing to happen to Cameron. I look forward to meeting other parents whose children have cochlear implants.


11 Year Old Child benefits from Spectra
by Keo Rogers, Ephrata, WA

I have been meaning to write to you for a long time. My son is Allex Rogers. If you remember Allex was one of the first children in the nation to receive an Implant. He was implanted when he was almost 4 (right about this time of the year) and he is almost 11 now so he has had it 7 years. He received his MSP about one year after being implanted and got his new Spectra in January of this year. Although I could write pages on what we feel he has accomplished and why, I am writing to speak about the new Spectra.

His father and I were very up and down about whether to get this new device. Allex goes through so much every time he changes devices and the reviews have really been mixed according to other implantees. We did feel that if the device worked, it would definitely help Allex who is almost completely integrated in a regular (noisy) classroom. We decided to give it a shot.

The very first time he put it on his ability to understand went to zero!!! We realized it would take awhile for him to get use to it and the tests showed he had definite improvement sooo. During the next several months he had it adjusted and honed but he hated to wear it and although he was starting to understand voices once again it seemed to us not nearly as well. He had picked his own program and his T's were really high. During all this, Allex refused to talk about what he didn't like about this new processor or if the was hearing better or worse. I was really sick at heart fearing we had made a serious mistake especially since many adults had turned their Spectras back in because they couldn't adjust to it. Trying to find a solution to his problems, we went back on August 28th (almost 8 months after he got the new processor) and had his T's lowered.

The improvement was dramatic and immediate!!! His understanding of our voices has taken a big leap forward. His voice is improving. I finally believe we have made the right decision. I am looking forward to what the next few months will bring. To those who are having a difficult time, I encourage you to hang in there and keep trying.

Thank you Gordon for all your work in putting the newsletter together. We enjoy it very much and always look forward to receiving it.

P.S. After refusing to pay, our insurance company came through for the Spectra but it did take several persuasive letters.


New Implantee Describes Results
by Helen Laythe, Portland, Oregon

I had my Cochlear Implant on June 22nd and everything went pretty much as Dr. Schleuning [Oregon Health Science University in Portland] and his staff had prepared me for. Some discomfort but really quite easy all the way around. The next few weeks went by well except the closer I got to hook up time, the more anxious I got. Scared of the unknown but excited at the same time.

August 3rd finally arrived. The big mapping day with Dr. Plapinger. It went very smoothly and the outcome was better than I ever dreamed possible. I was hearing very well!!! Yahoo!!!!! The first big obstacle I had was my own voice. I had not realized how loud I was talking before. So it took a few minutes to bring my voice down.

My daughter was with me so after we left, I was constantly asking what the sounds were. Elevator bell - helicopter, etc., bathroom sounds like flushing were very loud. (That improved in the next week.)

Traffic noises were not as bad as I expected. In fact it was fun hearing cars tooting their horns again.

My daughter turned on the car radio. The first music was really jumbled. It turned out to be Rock and Roll but I didn't understand that way back when I had hearing. She then turned to some soft chamber music. It was not clear but enough for me to get comfort from those lovely sounds.

The music sounds climaxed my first day and I then cried with overwhelming joy.

The next few days were filled with many surprises. the biggest was having my 2 year old granddaughter say Hi `Grandma. I have never heard any of my four grandchildren. I actually heard the squeak of someone's shoes as they walked past me. I could hear the TV in the next apartment. (I know some people complain - I loved it.) Heard the clicking of my turn signals in my car. Played Bingo the other afternoon and head all the numbers called but maybe three. The list goes on and on.

I don't do well in restaurants or places that have a large group of people. They tell me I should improve. Wow! I can't imagine because I'm so happy with what I have right now.


3 1/2 Year Old Child Doing Well With Implant
by Piper Cheney, Mother of Jordan Beckingham , Fox Island

Jordan Beckingham received a cochlear implant on September 26, 1994 from Children's Hospital in Seattle. Jordan lost her hearing at 22 months from meningitis. She has now had her implant programmed for nine months and is 3 1/2 years old. She continues to thrill and surprise us as her use of the implant improves. She alerts to many household and environmental sounds and can understand many spoken words. Jordan currently is in school at Northwest School for Hearing Impaired Children in Seattle. She receives individual therapy from Star Leonard Fleckman an auditory verbalist audiologist, as well as therapy and close monitoring from Jill Bargones at Children's Hospital. Dr. George Gates, Dr. Kathleen Sie, Dr. Susan Norton and Dr. Jill Bargones have been wonderful to work with. We expect great things from Jordan and are excited about her progress with her new implant.

Are you enjoying these stories? We need yours for the next newsletter!!!! It is our readers who make this newsletter so interesting. Please share your story today.


Implant Update
by Joyce McDaniel, Port Angeles, WA

I had a great two weeks in Colorado with my youngest daughter. She was very pleased with what I hear with the implant. I was able to hear and understand the stewardess two or three rows away from me. I used the S setting their to cut down background noise. I thought it worked fine. One afternoon I heard a funny noise and couldn't think what it was. Then I saw a little squirrel sitting in a tree just chattering like crazy! Also I found I can actually hear a cat "meow", not just see it moving it's mouth!

Yesterday, Sunday, I called my daughter in Colorado. First my son-in-law answered and he knows how to speak slowly to me and I recognized his voice and was able to understand all he said. Then my daughter came on and I had the same results. Later I called my family here in Port Angeles and my youngest grandson answered first. I was surprised because I knew it was Damon. Then my daughter came on. I was really pleased with being able to hear and understand all of them. I did talk to another woman, who usually talks soooooo fast I have to stop her. I understood most of what she said yesterday too. I plan to try the phone more. With the phone, I didn't even use the phone adapter. I just answered my phone that has amplified handset and it was enough and I could understand. I am in the process of getting the cords for FM and infrared. Are there two cords needed? I want to be able to use the FM for the system at our Senior Center for SHHH meetings.




Thanks to all of those who took the time to share their stories with us. A very special thanks to the parents. In the past we have had few articles on children because we did not receive any. Every story that has been printed is going to touch someone's life. We are so proud of those who are willing to share, not only the joys but also the frustrations.




Congratulations to new Implantees

We are delighted with the large number of people who have either been implanted, have set date, or are awaiting their insurance approval.

Samuel Dean, Redmond, WA. is three years old and is the son of John and Judy Dean, Redmond, WA. Samuel received the Clarion implant in July at the Children's Hospital in Seattle.

Mary Sexton, Edmonds, WA was implanted by Dr. Charles Mangham, Seattle Ear Clinic. Mary received the Nucleus 22.

Brenda Trimble is a young child, from Anchorage, Alaska. Her mother is Susan Burch. Brenda was recently implanted with the Nucleus 22 by Dr. Alan Langman at the Virginia Mason Hospital in Seattle.

Ben Havdahl, Helena, Mt. was implanted by Dr. George Gates at the University Hospital in Seattle. He has the Nucleus 22 and will be receiving his processor in early December. Allison Salud, 3 years old. Parents are Lisa and Mike Salud and live in Federal Way, WA. Allison received the Clarion Implant at the Children's Hospital in Seattle.

Hector Pena, 7 years old from Honduras received the Nucleus 22 at the Virginia Mason Hospital in Seattle. Hector has been staying with Nanci Green in Bellevue and will return to Honduras after the first of the year. There was an article on Hector in the Seattle Times on Thursday November 23rd.

Timothy Smith of Bremerton will be receiving the Nucleus 22 in early December at the University Hospital in Seattle.

Emily Mandelbaum, Seattle, will receive the Nucleus 22 at Virginia Mason Hospital in Early January.

Jim Brown, Sedro Woolley, WA , is awaiting insurance approval to receive the Nucleus 22 at Seattle Ear Clinic as soon as his insurance gives approval.

Mel Maitland, Spokane, WA. He did not state what type of implant. or where he was implanted.

This is the longest list we have ever had. We suspect there are others that we are unaware of. We have not heard from anyone in the Portland or the Salt Lake City area. We hope to hear from some of these and will publish their stories in the next newsletter. In some cases we am not sure who did the operation or who your Audiologist is. Please give this information when you write in.


Thanks For Your Support
This newsletter would not exist if it was not for the financial support of our readers. Many of you have been very generous in your support. Following are the readers who provided this newsletter financial assistance this past quarter:

Donors Listed

Also thanks to all of you who wrote letters this past quarter. This newsletter is your stories and without your input we would have nothing to publish. We are especially interested in new implantees as well as things you have done to improve your ability to hear. We are not only interested in the joys, but also the frustrations. You story can help someone else who is afraid to ask.


Battery Clip in Spectra
If you are still having problems with the battery cutting out on the Spectra, you should return your processor to your implant center and have them replace it with a different one. Per Rhonda Marks, Cochlear Corporation has received FDA approval to change the battery clip. I have exchanged my Spectra and the new clip is very tight. I have had no problems with the clip since the exchange.


Telephone Connectors
Most of us with the Nucleus 22 who use the telephone use the TLP-102 adapter. Some have found the volume to high and have exchanged it for the 101. I find TLP-102 very satisfactory. I always turn my setting down on my processor before beginning a phone conversation.

I recently had a letter from a lady who works in an area with radio towers. When she plugs in she picks up the radio stations. Has anyone else had this problem? If so how did you overcome it?If you talk on the phone, what type telephone do you find best to use with the implant? Do you use an answering machine? Can you understand it? If so what brand do you have?

For those who have Nucleus 22, If you do not use the Cochlear patch cords, what do you use if anything? How do they compare with the Cochlear patch cords? If you have a Clarion or an Inneraid and use the telephone, do you use a patch cord of any kind? If so what do you use?Do you use assistive listening systems? If so do you use FM? Infrared? Audio-loop? Which system best meets your needs. If you use the Audio-loop what kind of patch cord or receiver do you use? In replying, please advise type of implant you have.

What about Watching TV? Does anyone use anything other than captioning? Are there other devices you use to improve you life style? If so please share them with our readers.


Why Should I Think About an Implant????

The interest in the Cochlear Implant is growing rapidly. Probably the greatest missionary in the world for implants is we the implantees. As our numbers increase, more and more people are learning first hand of the hope that exist for people who either lose their hearing or as in the case of children, were born deaf.

Yet at the same time there is a tremendous amount of misinformation spread concerning the implant, especially with children.

It is probably a very traumatic experience for parents to learn their child is deaf or for the child to go deaf at a very young age due so some type of illness. These parents are looking at ways to give that child an opportunity in life.

It would be wonderful if the parent could go to an organization and receive completely unbiased information concerning the best way to raise that child. But it is sad to say, this is seldom the case. If they contact a deaf organization they will be likely told that the child should remain deaf and be brought up in the deaf culture with American sign language. While that may be good in some situations, it does not apply to all. They should also be told of the benefits of bringing the child up oral. If they are planning on bringing the child up oral then they need to give that child all the help it can get in hearing what is being said. This is where the Cochlear Implant can be such a benefit.

As you read some of the letters in this newsletter you will notice that the parents and the professionals are telling you there is more than just giving the child an implant. That child will need special training and understanding.

It is the same if you decide to bring the child up in a deaf culture. The child will need special training as well as the parents.

Some parents are deciding on Total Communication. They want the child to grow up oral, but at the same time want the child trained in sign language so it can decide later in life the world it wants to live in. The main thing they all need is a lot of LOVE. Adults can make their own decision. I wish every adult, thinking of an implant, could read all of your stories you have sent in over the last four years. Even those who had problems at the beginning will tell you they would never give up their implant.

Many are afraid of the unknown. They are afraid it might not work for them. They have heard and read scare stories. I wish I could convince everyone to go in and find out if they are a candidate and talk with the Doctor and Audiologist. They would find their fears relieved. Some people want to wait for the latest technology. If you do that you will never have one, as technology is always changing whether it is a cochlear implant or a computer. Why Deny yourself the ability to communicate with your love ones.

I hear many stories of lack of communication in families. The person will tell me that the family must learn to communicate with them. But what about you? Don't you also have a responsibility to try to increase your ability to communicate. I suspect you will be amazed at how your family and friends will bend over backward to help you once you have helped yourself.

I have heard some of our younger members tell how the implant helped them either get a job or get a better job. Now that they can hear environmental sounds, the safety factor is much improved.

Some people state they are afraid to receive the implant for fear it will increase their tinnitus. Several implantees including myself found a dramatic decrease in tinnitus once we were implanted.

Are there possible side effects? Sure there are. Most of them will disappear in a month or two. But some do not, but people state that the ability to hear far outweighs the side effects they received.

If you are thinking of getting an implant, go to your nearest implant center and pose your questions to a qualified specialist.

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