Pacific Northwest Cochlear Implant Club Newsletter

The official newsletter for the Pacific Northwest Cochlear Implant Club.

Note: this newsletter has been edited in spots to keep the file size under 30K. Sections cut are indicated in italics. To get the entire issue, click on the Subscription link just below.

Volume 6 Issue 4
Summer 1997

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Children and Implants

Andy Hess
By Grandmother
Mary Harris,
Port Orchard, WA
Andy was implanted in May of 1995, and turned on in June. Since then we went to the John Tracy Clinic in California for a month. That was a terrific experience for all of us. Andy stayed in the Northwest School for the Hearing Impaired for the first year. This September when school started, we mainstreamed Andy in public school. He is doing great in school. With his speech therapy at Virginia Mason in Federal Way and his speech teacher at his school, Andy can understand and say just about anything. His speech is not as clear as most kids his age, but he is working on it, and it is getting better all the time. He does very little signing, and we don't sign to him either. In most areas his learning skills in school are above his hearing classmates. We must give credit for this to the Northwest school in Edmonds, Washington. In my opinion it is the finest school in the state for the hearing impaired. Andy has a lot of support from his parents, family, doctors, and his school. Andy has a long way to go yet, but his progress is unbelievable.

Andy was on King TV Channel 5 news a few weeks ago in a segment on cochlear implants. I listened with great interest and was shocked to hear the "Deaf community" was against implanting of children. To hear the spokesman for the deaf say that when you tell a child he need a implant, you are telling that child, he or she is not good enough. To me that is stupid. When, in fact, what you are telling your child is we love him or her so much and we want them to have all the opportunities that are available to them, and to make their lives easier and more full. No matter what the deaf community says, it is truly a gift from God. No child or adult that can be implanted should have to go through life without hearing. A child that is deaf or one that is implanted has to have the full support and dedication of the parents, family, doctors, and the school to make the success that he will need in the future. But to not give a person the technology that is available to them is so sad. I am so happy that my daughter and son-in-law gave their son "Andy" this chance. It has been great to see him make such progress. I want to thank everyone that has helped Andy, and there have been a lot. Thanks again.

Family Life with a Cochlear Implant
By Mother
Kathy Jadallah
Bellevue, WA
It was a year ago that Jordan (now 4 1/2) received his Clarion Implant. If someone would have told us this would be a great year I would never have believed them..

You have probably heard the wonderful stories of the implant, the negative side, and the psychological implications. I wonder if you have had anyone tell you how happy it has made their child?

My son was always a wonderful child and very outgoing even without language. In the last few months I have watched my child turn into a "normal" four year old. He is precocious, funny, and mischievous. Even though his speech is delayed, he speaks to strangers and asks if he can introduce himself to other children. He has an outgoing personality, but I also know that without his implant this would not be possible. Things are so much easier for Jordan and us now.

I know we have many struggles ahead, but I know that there will be far more joys. The implant causes much discussion, but I encourage those of you who are thinking about it to talk with families and adults who have had it. Really understand what it can do for your quality of life and how rapidly it has progressed in the past couple years. I think that you will be surprised, as we were, about what a "miracle" it is. [Article reprinted from the A. G. Bell WA Chapter Newsletter with the permission of Kathy Jadallah.]

Chinkee Gratrix
- this letter was cut to keep file to 30K and the editor' s note was shortened
[Editor's note:- <section cut>

Two years ago we had Implant Reunions in Portland and Seattle. At both locations there were a number of implanted children present. It was so exciting to see how happy and well adjusted these children appeared to be. I will not forget the story I was told about the child who had been implanted and how the implanted became deactivated due to a slide accident. These parents told of the frustration their daughter went through having to go back to a deaf world. They stated how difficult it was for the complete family. Then once the child was re-implanted, she once again regained her pleasant personality.

I also met a boy who was both deaf and blind and has the implant. It was so exciting to see that child in action and see the wonderful life he will have because the parents had courage enough to allow their child to be implanted. A couple of issues ago we carried the story of the child who threw the processor on the floor when she heard the first sound. Then a few weeks later, the child would no longer go to bed without the implant. If she woke up at night, and the battery is dead, she goes to the parents room to have them put in a new battery.

It appears that these children, once they have experienced how wonderful it is to have sound, no longer want to return to the deaf world.

Putting an implant on a child is not going to return the child to a normal hearing world. Just as Andy's grandmother stated, they did, and are still giving their son and grandson a lot of special attention.

Regardless of the method parents chose for their child, the most important ingredient is love.

Parents who have had their children implanted have given the child a choice. Once that child grows up, it can elect to remain in the hearing world, or just take the implant off and be part of the deaf world. This is a option that will not be available to those of the deaf community who state it is wrong to implant the child.

Every parent of a hearing impaired child should look at all the options available to them. They should talk with parents who have decided to raise their child in the deaf culture. They should also talk with parents who have decided to raise their child oral or with total communication. They should talk with parents who have chosen to give their child a cochlear implant. Then the parent should make the decision of what they feel is best for their child. Once they have decided on what is best for their child it is their decision and no one should be made to feel guilty of the choice they have selected.

I would be interested in hearing from parents who have elected to have their child implanted and why you decided to proceed. Your letter might make it easier for another parent facing the same challenge you have already faced.]

Young Girl Receives Clarion Implant
Amanda Maxwell,
Kennewick, WA
Debbie Hall, mother of Amanda, states Amanda, age 10, was implanted in Spokane by Dr. Neil Gidding. After the first mapping Debbie states: "Amanda is doing quite well. She can hear quite a bit more than I was expecting. For the first week, we could hardly get her to use it. Now she wears it constantly and has had only one mapping. Words are difficult but she will get them if she reads your lips. She has heard wind chimes, telephone ringing, dial tone, busy signal and does talk on the phone. She can't hear the words but knows when the other person has stopped talking. She hears the dryer, dishwasher, and clock ticking. She now enjoys and rocks out to the music in the car and in her room."

Teenager Receives Nucleus 22 Implant
Bridget McCarthy
Olympia
Bridget was implanted at Madigan Hospital and recently started her mapping at the University of Washington, Sue Sanborn, Ph.D. Audiologist.

Bridget has not had much time to adjust to her new way of hearing. I asked her for some comments for this newsletter. Here is her reply:

"I am going thorough a period of disappointment because I can't distinguish between sounds (everything sound pretty much the same) but I am hearing things I never heard before. So, I have mixed feelings about it. My mom keeps telling me I have to work at it and practice but then I start groaning and saying "Oh man, MORE work??!" I guess when you're a senior getting ready to graduate, the last thing you want is extra work. I just need to become more disciplined about the whole adjustment period, I guess."

[Editor's note: Bridget, do not feel alone. Many of us went through the same early stage disappointments. I think all of us, regardless how much we prepare ourselves, expect to hear normal as soon as the processor is turned on. It just does not happen.. But in a few months I suspect you will look back at the situation and grin. I suspect, once you have adjusted, you will find out how much easier it is to speech read with the implant. Thanks for your report Bridget. I know how difficult it must have been for you to make it. All of us are rooting for you and hope you will report more in a future newsletter.

New Clarion Implantee
Mauro Magnani
Marano, Venice, Italy
My cochlear implant surgery took place on March 17, 1997 at the Venice General Hospital. The surgery was performed by Prof. Gregorio Babighian ("father" of implant surgery in Italy.) I had my first map on April 4, 1997 by Dott. Sergio Panizza

My CI processor is a Clarion MS and I am now using a CIS map. I am happy with the results so far. I just finished a long voice business phone call here in my office. It has been more than ten years since I have been able to do that, even with the benefit of a hearing aid. I'm naturally very happy on having my CI, but I am still expecting much improvement over the next several weeks. The area that will require the most work is being able to carry on a conversation in a noisy environment.

[Editor's note; Italy is a long way from the Pacific Northwest but we are delighted to have Mauro as a member of our club. Isn't it exciting to hear the wonderful results people receive all over this world when they decide to proceed with an implant? Our congratulations to Mauro.

Mauro is the president of AUDIES Association in Italy. It is a national association for the fight against deafness and the defense of hard of hearing and late deafened people's rights.

Mauro has established a couple of web sites on the Internet. They are:
AUDIES Association
Cochlear Implants Info.
CICI Convention and more info on the CICI 1997 convention
Mauro's e-mail address is: Magnani@tsi.it ]

New Nucleus 24 Implant
Jacqui Metzger
Seattle
Jacqui was implanted at the University of Washington by Dr. George Gates. He has had her mapping done by Sue Sanborn also at the U of W. She states, " I was hooked up in early March. After two months it all still feels very new and I'm making slow but good progress." She states she will write a more comprehensive piece in a few months.

Life with a Cochlear Implant
- this letter was cut to keep file to 30K.

First Year Check-up
By Dorothy Wood
Lakewood, WA
On April 16th I returned to Virginia Mason Hospital where Carol Brazil gave me my first annual check-up since my implant on March 1, 1996. She made a slight change in one channel of the program I have been using for the past 6 months as I found the higher musical tones (violin, flute, clarinet) to sound "tinny"; otherwise I have enjoyed the music of symphony, opera, and jazz. I feel fortunate to once again enjoy music as I have been told it is unpleasant for some implantees. Carol has been so helpful during the programming and adjustments and I greatly appreciate her patience, skill and friendly manner.

The battery of tests taken prior to my implant indicated a score of 24% comprehension and I now scored at 92%! Apparently my brain is responding very well to the stimulation the implant affords and I have been told it will even get better.!

When I am out-of-doors I hear the numerous birds singing in our yard, the wind in the fir trees, traffic, sirens, voices, etc. What a blessing it is to once again have these experiences. I now hear approaching cars when out walking, so my safety there is better. My taste, which was somewhat changed following surgery has now returned to normal.

My life has changed so much as I no longer hesitate to go into group or public situations where I must hear. I am now president of the Tacoma Chapter of SHHH, a position I would not have considered before. My responsibility as publicity chairperson is so much easier now as I am more comfortable approaching people and answering their questions.

I use a patch cord with my cordless telephone, at meetings and the theater and have a longer cord with a microphone which has been useful in noisy restaurant situations. With these my hearing is very good. I continue to lip read when speaking on a one-to-one level as I find it helpful.

In closing, I feel it is important to spread the word about the benefits of a cochlear implant and I take every opportunity to explain it to others, hoping they will experience a better quality of life such as I am experiencing.

Enjoying Nucleus 22
By Diane Terry
Tacoma, WA
I apologize for not keeping in touch with you. I thought about calling you many times, but wanted to wait till I had something that I was going to live with.

- this letter was shortened to keep file to 30K.

Even though I've had many problems, I'm still doing very well in spite of everything. I can't tell you how overjoyed I am to hear after 21 years of nothing. I also feel blessed that I can use the phone (voice). Of course there are a few that I can't understand over the phone, but I am pleased with my progress in general.

It was so different this Christmas cause this was the first Xmas I could hear what my family was talking about. They all are thrilled to be able to talk with me too. I talked to my brothers over the phone during the ice storm. We all were trapped at home. I could hear one brother better than another but still could carry on a conversation. I might add I was never able to talk with my brothers over the phone cause they didn't have TTY's.

I am discovering how noisy some things are! Like the neighbors dog that barks all the time, and my clothes drier that has the grossest sounding buzzer. I now can make raisin bread with my bread machine cause I can hear the beep when to add them. I can also hear when the vacuum cleaner becomes unplugged instead of vacuuming with an unplugged vacuum (boy that really makes you feel stupid). For the first time ever the oven timer becomes useful! I was amazed at how many different phone rings there are in my office. I just thought that was so cool! My co-workers couldn't understand why I would want to pay attention to all of them. Things are much better at work too. So, as you can tell, I am nothing but thrilled to be back to life again!

I hope this makes up for all the times I should have called you. I want to thank you for being there for me to talk with. It really helped to be able to talk with someone who has went through it.

[Editor's Note: Diane's message made my day. She visited me prior to the implant and we had to communicate on the computer. So I was completely shocked one day when I answered the telephone and it was Diane at the other end. I became so excited that I could not understand her as well as she was understanding me. I lived over eight years in a silent world. She lived over 21. So I can understand the change that took place in her life. I doubt anyone, who has not experienced total deafness, can understand the total frustration when you are with your family for the holidays or any time of celebration, and not be part of what is going on. So, I can understand the thrill it must have been for her this year to once again be part of the family gathering.]

Vertigo Problem
By Larry Louck
Mountlake Terrace, WA
In late 1992 or early 1993 I, and three others of my family, had a pleasant visit with you at your home. Shortly thereafter I received implant surgery and was equipped with a WSP and accessories. Of course we will never hear as normal again, but overall it has been a tremendous success. Two years ago I received a new Spectra 22. My surgeon was Dr. Charles Mangham and my audiologist is Jennifer Castro at Seattle Ear Clinic. I plan to go back to Jennifer soon for a check and re-programming.

Before surgery I had the start of a vertigo problem. I have no inner ear assistance now and depend only on eyesight and touch for balance and I am always a notch behind - have a faltering and staggering gait. As you may notice, it now affects my handwriting and in the long haul has a very slowly - progressively gotten worse.

I still drive - daytime mostly and am extra careful. I am 84 now - still walk or stagger up to three miles per day, but definitely not very fast. I am known as the walker who uses both sides of the sidewalk at the same time - "oh" those interesting side trips.

I have enjoyed your newsletter throughout the years and read of no one who continues to have vertigo as a problem.

I have persisted with much medical and non-medical assistance but can find no assistance for my vertigo except what I am able to devise each day. Please keep the newsletter coming my way.

Enjoying the Clarion Implant
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Conflict With Glasses and Microphone
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Enjoying CI24
by Kiril Sokoloff
Ketchum, ID
I am using a cellular phone but can't hear quite as well as on a regular phone. My latest mapping (February 10th) was quite remarkable. I have much more depth of tone and much more full bodied hearing. I have a lot more to say, but need a few quiet days. Will try to get something to you soon. The most important thing that has happened is I am no longer retreating. After 10-15 years of cutting back and withdrawing as slowly as I could, I'm now able to advance. Truly remarkable!

Implant Helps In Understanding
by Emily Mandelbaum
Seattle, WA
I want to tell you that, without the implant, I'm not sure I could ever have gotten through the sale of our home of nearly 30 years and the move immediately following without a hearing "interpreter" around me all the time. For I had to converse with movers, real estate agents, inspectors, repair people, painter, insurance representatives, Utility officers, etc. etc. Not that I understood them all well - some were hard - but well enough, especially when some, upon my request, slowed their speech. There was also the need to react quickly in so many instances where I could not have responded in time, if at all, with my hearing aids. That would have triggered the humiliation, consequent loss of esteem and depression to which I had become so accustomed. When I think of the temptation to wait for "better technology", I am so glad I did not. Would those improvements, intriguing as the are, ever have compensated for the nightmare I would have suffered during this period? Never!

Many implantees say they wish they'd gotten their implants years earlier. I feel the same, although it was not possible because I repeatedly failed to meet the criteria. I believe those criteria have changed or are changing so that, hopefully, people as desperate as I was will not have to wait as long. (Emily Mandlebaum, Implanted January 3, 1996)

Enjoying Implant
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Enjoy Newsletter
by Sandy Daniels
Bellingham, WA
I have given your name and address to the Audiology department at Western Washington University. I hope you don't mind my doing that. [Editor's note: Not only do I not mind, I am very appreciative of those who make copies of the newsletter and share it with others.]

Occasionally, I speak to the classes there on my experiences of having the cochlear implant. These are graduate students planning a career in Audiology. I thought your newsletter would be of great interest to them and future students also.

I never tire of reading how people are doing - the ups and downs - of having the implant and any new technology out there. Your are doing a terrific job of keeping us informed. Thank you!

New Map Reduces Twitching
by David Dyer Milton
Freewater, OR
Yes, I would like to continue receiving the Pacific NW Cochlear Implant Club newsletter. It is always so full of helpful and interesting information. Enclosed find my check to help keep the letters coming.

I was implanted with the Cochlear Mini-system 22 using the MSP speech processor by Dr. F. Owen Black in August of 1990 at Good Samaritan Hospital in Portland. In April of 1995, I updated to the Spectra 22.

I received my 40th plus map in September of 1996. Kim Allen, audiologist, was able to put several of the eight channels back in that had been taken out because they made my face twitch or they were screeching. So far I've not had a problem with the channels that were replaced.

Although the cochlear implant has not been perfect for me, my family and I are most grateful for it. I would be totally deaf without it. Thanks again for the newsletter.

[Editor note: I was talking with Suzanne Quigley, Ph.D., Lead Audiologist, Virginia Mason. I mentioned this to her and asked her about it. Dr. Quigley informed me they have developed a new mapping process. So if you have some electrodes turned off due to twitching, and have not been in contact with your audiologist in a long time, you might want to check with him/her and see if it is possible to have some of your electrodes turned back on.]

Big Improvements in Understanding With Implant
By Sergio Martinez
Seattle, WA
On July 9, 1996, I was hooked up to the Spectra 22 processor. I have the Nucleus 22 implant. Today, nearly 8 months later, I was tested on key words in open-set sentences (no lip-reading.). Let's keep in mind that theses are sound booth conditions. On CID sentences, I got 95%. I got 91% on the noticeably harder Iowa sentences. At the six-week point, I got about 80% and 70% respectively. So, there is improvement over time.

This is a huge improvement over my old, bilateral, aided profound loss, I would usually score about 40%. The 40% score came from my aided left ear. It was my 0% right ear that got the implant! I do not wear a hearing aid on the left ear anymore. I did for about a week after implant turn-on. Recently, I have tried the left ear hearing aid (a Unitron power aid) again a couple times. With 95 dB threshold, that ear sounded muddy and much less sharp that the implant. It was distracting and gave less information than the implant. I can't believe I ever had to get by with that ear.

I think it has been very helpful to spend my bus commuting time listening to National Public Radio (KUOW 94.9 FM). Their reporters and interviewers generally have good enunciation. I use a Comtek patch cord with a small palm-size radio.

Rechargeable Batteries
by Homer Kissinger
Richland, WA
Panasonic has new AA NICad battery out, their #P-3GPA rated 1100 mAhr. That 10% greater capacity than the ones furnished by Cochlear and works just fine. I found them at Price-Costco but expect they're widely distributed.

[Editor's note: Be certain to check with your audiologist if you are trying out new batteries or anything else to be certain it will not damage your processor. Homer also informed me in another e-mail message that some members of his family were in a very serious car accident. He was able to keep in touch with the telephone and using the telephone cord supplies by Cochlear Corporation. He stated he would never have been able to do this with his hearing aids.]

Insurance Coverage
by Rita O'Clair
Auke Bay, AK
I have never seen it mentioned anywhere in the newsletter that some insurance companies have different coverage rates for surgery depending on whether the surgery is done on an outpatient or an inpatient basis. For example, my Aetna coverage is 100% for outpatient surgery and only 80% for inpatient surgery. Since cochlear implant surgery is so expensive, the difference between outpatient and inpatient coverage is very significant. Normally, cochlear implant surgery is done on an outpatient basis. But I recall how, after my surgery, I was given the option of staying overnight because I vomited blood for over 4 hours after surgery. Since I was having such a hard time of it, they offered to let me stay overnight. I was feeling so bad that I was very tempted to take them up on their offer, but finally decided to leave because I was so afraid of contracting an infection. It wasn't until later that I found out that if I had stayed overnight, my surgery would have been reclassified as inpatient and I would have lost that 20% of coverage! At the time that they were urging me to stay overnight, no one explained this change of coverage to me and it wasn't until much later that I realized what would have happened. Anyway I think people should know this before surgery is done. Thanks for the good job you are doing with the newsletter.

[Editor's note: If your insurance policy has different rates for inpatient or outpatient, you might want to check it out. But I would strongly recommend you follow the recommendation of your doctor]

CICI Membership Information

Are you recently implanted? Please share your story with us? Have you recently upgraded your equipment? If so please share it with our readers as to what you did and how well you like (or dislike) the upgrade.
Thinking of getting an implant but have questions? Let me know and I will try to answer it or put you in touch with someone who can.

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