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Pacific Northwest Cochlear Implant Club Newsletter

The official newsletter for the Pacific Northwest Cochlear Implant Club

Volume 5 Issue 3
Spring 1996

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Convention

The ISHA convention is a group of professionals who deal with hearing loss, such as Audiologist and Speech Pathologist. The convention will take place in Lewiston, Idaho at the Ramada in on April 25th, 26th, and 27th.

On April 26th they will be having a presentation on implants by Dr. Giddings of Spokane. They would like to have people who have implants come to the convention and talk one on one with the professionals who want to know more about the implant and how it affects our lives.

If you live in that area and can make it to the Ramada Inn please advise me so I can send you more details. I plan to attend. Please let me know as soon as possible by mail or by E mail.

My address is on back page.


AG Bell Convention To Hold Seminar on Cochlear Implants
The AG Bell convention will be held in Salt Lake City June 26-30th. An all day Symposium on cochlear implants will take place on June 27th. Some of the subjects covered are:

If you would like more information about this symposium, please contact Ed Pottharst, 4460 Woodland Park Ave. N. #6, Seattle, WA 98103. Phone 206-547-9635 or via E Mail: edp@u.washington.edu.


CICI Board Meeting To BE Held In Iowa
CICI annual board of Directors meeting will be held at the University of Iowa Hospitals and Clinics (UIHC) in Iowa City, Iowa. The meeting will take place May 16-19th. Even if you are not a member of the board you might want to attend their Strategic Planning meetings which will be held all day Thursday from 8:00 a.m. to 5:00 p.m.. The headquarters for the meeting will be the Highland Inn in Iowa City.

If you are not interested in the planning sessions but would like some fun, you might still join them on Saturday afternoon for a trip to the Amana Colonies.

Arrangements have been made with Colony Visits; Heritage Destinations for a tour of the Amana Colonies. This hosted sight-seeing tour will depart from UIHC at 2:15 p.m. on Saturday May 18th via a deluxe comfortable motor coach, which will offer complimentary refreshments on the tour route. A knowledgeable, experience and entertaining Colony Visits Host/Guide will conduct the orientation and introduction enroute on the Motorcoarch. Upon arrival in the Colonies, we will be treated to special, historically entertaining Amana Colonies visit - to places off the beaten path.

The adventure will take us back in time to the area of Communal Amana and entertain us by letting us experience what life was like for these Separatist Pioneer Iowans - it begins with a step back into Communal Era Kitchen Haus, where Villagers once partook of five hearty meals a day that were meticulously prepared under the eye of the Kitchen Boss . Supplies were delivered fresh daily by horse and wagon from other village supply houses - such as milk from the milk house, meat from the butcher shop, and fresh breads from the village bakery. From there its on to the village bakery, where breads and rolls are still baked on the hearth just like in the olden days..after a peak into the oven and the opportunity for fresh, warm sample - it will be time to hitch the buggy (in this case the motorcoach) and be off to next village...which is the olden days was two hours away by Ox cart ..but, by motorized transportation is only 5 minutes away!

The Hosted sight-seeing tour is concluded in the Village of (Main) Amana where we will have time to explore the village on foot, at our leisure until 6:15 p.m. At this time we meet at the OX Yoke Inn for a 6:30 p.m. dinner. The delicious dinner of German/American fare will include salads, two entrees, vegetables, potatoes and gravy, sauerkraut, breads, a non-alcoholic beverage (cash bar available for those who wish) - all served family style. Food is brought to the banquet tables on platter and in bowls and passed family style. When platters are empty, they will be replenished. The bountiful meal is topped off with a special desert.

After an exciting and fun filled afternoon, we will bid farewell to the Amana Colonies and be returned to our comfortable lodgings at the Highlander Inn at approximately 10 p.m..

The cost of this tour and dinner including admissions and gratuities is $47 per person.

If you would like more information about the meetings or entertainment, please contact Bev Fish, 5134 N 105th St., Omaha, NE 68134. Phone 402-496-1673. Or by CompuServe #70243,2771. [Editor note: Information for this article obtained from the Chapter Leaders newsletter: CICI On The Move. January 1996.]


Oregon State to Review Medicaid and Implants
In our winter edition we ran an article concerning Oregon and their policy of denying coverage for implants.

Several of you contacted the Oregon Health Service Commission and expressed your concerns. Ruth Arndt of Portland and Karen Swezey of Eugene informed me they had received communication from Paige Sipes-Metzler, Director of the Oregon Health Services Commission. She has advised Karen Swezey that the situation will be reviewed with Cochlear Corporation and Dr. Schleining from OHSU this spring.

We are indeed grateful to Page Sipes-Metzler for taking the time to respond to our members concerns. It is wonderful to know that there are still people in government that do take the time to respond to the questions and concerns of it s citizens.

We will continue to update you on the situation in future newsletters. If you reside in Oregon and have not yet sent in your letter telling what the implant has done for you, please do so as soon as possible.


My apology to Brenda Trimble
In the Winter Edition, I had the following statement:

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.

I had the wrong mother and Daughter. Brenda Trimble is the mother, and the daughter s name is Nicole. Here is her letter:

I just laughed as I read your newsletter! My daughter Nicole was implanted on September 27, 1995 with the Nucleus 22 by Dr. Langman at the Virginia Mason. I read your list of new implantees and was surprised to find myself on the list! I laughed because I am so pleased with the devise that I would gladly receive one!

Nicole Was born deaf. The earliest hearing tests were done at two months by the BAER and showed no hearing at 102db. Now my deaf baby is dancing to music, saying mmm for more and milk, and sings while playing the piano. I believe her future has broadened and her world expanded. I would like to thank my mother, my Father-law, everyone at Virginia Mason, Cindy and Amy with ILP, Dr. Ryan, RN Lyndell, and Alaska State Medicaid.

Virginia Mason has been great, but we are so far away. I would like to correspond with other parents of children in situations similar to Nicole. Nicole is two years old and has siblings ages three and two. I work full time so Nicole is in a daycare. I have to take advantage of every possible moment and would like to know what other parents experienced.

As a parent I have very few complaints. Nicole tolerated programming, and has worn the microphone on full volume from the very start. I do feel the processor should have a low battery alarm, for the parents of small children who wear their processor under layers of clothing, making it impossible to see the light indicator.


New Implantee
A letter from Emma Pecchia, Spokane, WA

Thank you for the SHHH and Cochlear Implant Newsletters. I enjoy them both.

I had my cochlear implant in April. Dr. Neil Giddings of the Spokane ENT Clinic is my surgeon and Debra Ashley my audiologist. I have the Nucleus 22 Channel system with Spectra speech processor. From the start I ve been happy that I had the implant. I feel more secure being able to hear environmental sounds. I feel I need more work with mapping and practice because I still rely on lip reading to understand. I can use the phone for simple communication if the person calling talks slowly.

The only side effect from surgery is continued numbness of the operative site and ear.


Pen Pal Wanted

Denise Thew was implanted at age 16. She is now 23. She is very much interested in communicating with other who received implants at her age. She now lives in Canada but plans to attend College in Utah this fall. Denise was the first teenage in Canada to receive the implant in Vancouver. She is presently employed as Customer Service Representative for Bank of Montreal and is currently studying to become a teacher for the deaf. Here is her request:

I am 23 years old female from Vancouver BC. Canada.. I will be moving to Salt Lake City, Utah in the Summer to attend university. I ve had the implant since I was 16. I would love to have some pen pals from anywhere.

Please E mail me at dthew@direct.ca
or write:
213-9270 Salish Court
Burnaby, BC Canada V3J7C4


SHHH Regional Convention in Portland October 25, 26, and 27

Many of our implantees are members of SHHH. There will be a regional convention in October. One of the sessions will be on Cochlear Implants. Dr. George Gates, Executive Director of the Virginia Bloedel Hearing Research Center will do the Professional presentation. Rocky Stone, Founder of SHHH will make the layman's presentation. Details will be published in the Summer newsletter.


New Implantee
A Letter from Karen Utter, Edmonds, WA

I would like to preface my report with a special thank you to Gordon Nystedt for all of his timely information and faithful support both before and after my surgery.

I received the Nucleus 22 implant by Cochlear Corp. on December 21, 1995 at the University of Washington Medical Center in Seattle. My implant team was Dr. George Gates, surgeon, and audiologists Sue Sanborn, Ph.D. and Tom Rees, Ph.D.

The hospital stay was about a day and a half due to some dizziness, which had been very accurately predicted by the earlier balance testing. Delayed swelling, which occurred about 5 days after I got home, caused some facial palsy which has now gone away. The balance problem is now only on occasional sort of off kilter feeling.

On January 25th, after preparing myself to hear only strange sounds, I was hooked up and was wonderfully surprised to be able to understand words right away. The words were very weird and sort of electrical sounding, but quite understandable. Two days later I attended a meeting and used an assistive listening device (Williams Sound) at a presentation. It was amazing how much more I was understanding with the implant than I had with my hearing aid. I am now so surprised at the volume of sounds that I am hearing.

So many things are much louder than I remember, but I am also hearing so much more. I didn't realize how much I had been missing. After 3 weeks and as many maps, I continue to be amazed at how normal so many things are sounding to me already. I practice listening to TV news and weather reports to understand voices without the captions and find the AIS makes the TV much clearer tone just as assistive devices do. I think that using a lot of assistive devices with my single hearing aid was helpful in setting up habits for using the implant successfully. The only thing that I have not yet spent time with is the telephone.

Already, family members are telling me that I appear more relaxed when listening. I am extremely happy with my decision to have the implant and very grateful for all of the help and support that I have received so far. [Editor note: Karen also sent me an E mail on some of the things she is doing to help understand. Following is a reprint of part of that message;]

I have been practicing with a tape recorder and children s books with an accompanying tape. Dr. Sanborn said this helps with word recognition, and I think it does. Children s stories are fairly short and the reading is a bit slower. By following the words in the book, it at first helps recognition of the size or length of the word, and with more understanding or later with hearing the word. Some children s taped stories have a lot of background noise. The Bernstein Bear series has minimal noises and good readers. (I bought a couple of them and will share with our granddaughter.) I find I can do very well also with the AIS and plugging directly into the TV. I can follow news and weather programs quite well. The new NW News Channel is a good one cause it s on all the time and only one person is speaking at a time.

New Implantee
A Letter from Emily Mandelbaum, Seattle, WA
[Emily was implanted at Virginia Mason by Dr. Alan Langman and her audiologist is Carol Brazil. Remember, as you read the following, that she has only had her processor 11 days.]

I've had my spectra speech processor 11 days, and I am using my 4th map. The implant has turned my hearing world upside down. There have been stresses and struggles but also delight and great hope for my hearing future.

I was nervous and curious at my first mapping session. Five of the 22 electrodes had been tested in the operating room, and both surgeon and audiologist assured me it worked. But still, I sighed in relief when the audiologist played the first tone of electrode #22. My audiologist asked me to tell her when the tone associated with each electrode became uncomfortably loud. That was tough for me. Then she played several tones and asked if they were equally loud. That was hard too because all the tones are different pitches. At first they sounded scratchy and I could barely tell the difference in pitch. But the more the audiologist played them, the prettier they sounded, and the more they sounded like a scale.

When the first map was completed, the audiologist spoke to me and I did not understand. Then I realized the hearing aid in my other ear probably muddled the implant sounds, so I took it off. I then perceived two voices, one coming though my good ear and a split second later, a tiny, squeaky, raspy voice form the implanted ear - it was surprisingly clear. It made me think of Jimmy Cricket, Pinacchio s conscience. All voices sounds the same - my husband s, my daughter s. Environmental sounds that I expected to bother me, did not - water running, papers crunching, traffic. I also had the odd sense of not being in my world - as if the sensory signals I'd once gotten directly were now beamed at me from some distant planet. That feeling persisted for nearly a week.

The second map, 2 days later, was a big change - programmed very differently said the audiologist. I believe I set the low tones louder than the higher ones. We tried it out in some noisy areas around the clinic - a bit overwhelming but seemed OK - elevator beeps, footsteps and voices in a concrete stairwell. All sorts of beeps, clicks, squeaks, baby crying at home. Individual voices became more distinctive although still very unnatural. I understood men's voices but struggled with women s. I got a headache, got tired, shut off the processor and took naps. But it was easier to hear voices from across a room and some softer voices became audible. On the way to my 3rd mapping session I turned on the radio and understood some words in a weather forecast. That was thrilling.

The 3rd map, two days after the 2nd, emphasized high sounds more and helped me with women s voices. I still had trouble with clerks in grocery stores, soft voices. I couldn t quite understand a 5 year old boy. I started watching PBS TV news without captioning and understood some speech. I watched reruns of Matlock - dramas were more difficult but I did get some words (and sometimes action speaks louder than words anyway). I d forgotten how rapidly people speak when they are not talking to me. On radio I graduated to a newscast and understood about 30% when the speaker had a GOOD voice.

The 4th map came 5 days after the third. this time the loudness of mid range sounds were increased relative to low and high sounds. I noticed that what seemed loud to me while programming the previous map, now seemed softer - brain adjusting I guess. I m glad to have this one for a week. I visited the Home Show in the Kingdome and held short but successful conversations with some of the exhibitors - others I could not understand. Listening to my husband in the car has become easier - if he is the driver! Grocery clerks are a bit easier to understand now. Newspapers and cars are now unpleasantly loud. I still speech read for all conversations. I still ask for repetition but now I expect the repetitions to work. Before I d just give up after multiple attempts and often not even try.

After each mapping session I walk out of the audiologist s office somewhat stunned and uncertain about how I will do or if it will be too stressful. It s reassuring to know I can call if there are problems. I m beginning to realize that I know nothing about the normal loudness of sounds. The microwave roared for my hearing aid. Now it just hums with the implant. I keep asking my husband how loud he thinks certain sounds are. Most music sounds lousy except for some piano pieces that were pretty although unnatural - and I couldn't t detect a melody.


New Implantee
A Letter from Catharine Talbot-Lawson, Seattle, WA

Catharine was Implanted at the University of Washington by Dr. George Gates. Her audiologist is Sue Sanborn Ph.D.

Catharine had a very successful recovery. She attend a party two days after her surgery. She was operated on Friday and returned to work the following Tuesday.

Catharine received her processor on January 11th. She sent me the following E mail message on January 12th.

Thank your Gordon! I have to say that my experiences, both yesterday and today, pretty much mirrored yours; however, I have deliberately kept my expectations low, so I wasn t disappointed. I just had/have to concentrate on the fact that right now the SOLE emphasis is on loudness and softness and that there is really NO sound quality. I sort of heard Sue say this, but I kept looking for something that sounded like what I was used to hearing with my 2 aids and of course, it wasn t there. At least all the channels are working! I suspect I ve rather tired Sue out because I m so picky about the settings, but, as I said, I have to live with it. Paper really was the worst of all the amplified noises, I agree! The diary is already started. Today I m finding it more supportable to keep the process on S , which I hope I won t have to do after the next map because it uses up the batteries faster.

Following is her report about three weeks later, (February 7):

Thanks for the continued encouragement I don t know if you know how much it means, I m sure to others as well.

I rarely use the S setting, as a matter of fact, and when at home do not use the hearing aid because I found it was over-riding the implant (due to familiarity.)

However, the 3rd map was a charm. I got Sue to put in more of the familiar low tones and now I m where I expected to be not perfect but virtually minimal Mickey Mouse squeals which previously were completely distracting and made no sense except with a few people with high pitched voices who spoke slowly and had no background noise. Now I can even hear on the phone, albeit not everything say a good 60 % at least. So I am very pleased. Maybe I needed to have the fortnight of disaster to appreciate what I have now! I still do not hear low voices clearly nor loudly, and if I try to turn up the implant, the other noises are deafening! Believe me, I m not complaining and realize there is a lot of fine tuning to come, but this is nearly normal compared to the 1st two maps and the aid no longer is the strongest inputter, so to speak.

On February 19th, Catharine posted this on Behind-Hearing:

Less than three months later, I have great speech discrimination, I think. Remember, I was able to hear with two aids prior to the CI, but now realize how many high sounds I d not been hearing for nearly 40 years shhh , crows cawing, many buzzers, etc. I can discriminate music but not (yet?) well. It is much more relaxing now to lip-read and I can even hear some things without doing so. I can even use the telephone a bit. With this much progress, I can envision a lot more to come! My 1st two maps were awful, but the next two have opened so many wonderful sounds.


Meniere s Disease
by M. June Knudson, Roy, UT

Well, I wanted to write again and thank you for sending me the newsletter. It is really nice to hear about all of the people who are getting an implant and their experiences with it.

Since I have written to you last I have had several experiences that I would like to share with you. In July of 1995, I had an attack of Meniere s disease. It was a full blown attack and one I wouldn t want to go through again. I received the medical help that I needed and so far I am doing OK. But when I had the attack it left me more hearing impaired than I had ever been. From the experiences of the audiologists, they said most patients that had attacks (their hearing) came back within six months. Well, wouldn t you know that mine has not. It has been a very difficult situation for me.

In the meantime my voice box was lost through the Fed. Express system & was never recovered. So I had to have a new ear hook rebuilt (The ear hook was lost also. Since then I have never been able to hear at the same quality that I was hearing before. Words are all scrambled and usually too loud. (This has been after my Meniere s attack.)

My audiologists at the University of Utah have bent over backwards to help me with everything that they could to help me hear better but not too much has helped.

I asked Dr. Parkin (my implant surgeon) why after all these years (10) would I have an attack of Meniere s. He said that he didn t know.

My understanding is that people who have Meniere s usually have the attack and then lose some of their hearing with it.

What I would like to know is if anyone out there who reads your paper has had a similar experience? And if so, what they have done about it?

I was probably hearing the very best that I have heard since I lost my hearing over ten years ago. I felt really confident and able to cope with most any situation. Now this has changed again for me.

I would like to hear from anyone through your paper if they have had the same kind of experience.

Also, when I lost my hearing the tinnitus was really bad. I started hearing music to everything that I would see and even think. I have been able to get used to that but with the Meniere s attack, it became worse and now sometimes it even wakes me up in the night, it is so loud. I have only met one other person who has this problem (music). Would appreciate anyone answer and experiences concerning these two examples.

One more thing: How successful has a second implant been for those of you who have had it?

[Editor note: June has the Ineraid Implant. The Ineraid was never certified by the FDA and is no longer in production.

I was one of those who have had two implants and also tinnitus. Prior to my first implant, I would hear a very loud roar day and night. After receiving my implant I still have tinnitus, but it is much lower and hardly noticeable.

I originally had a single channel implant. It did help me with environmental sounds but did not help much in group situations. It is almost like comparing a Model T to a luxury car. There is no comparison to a single channel and the Nucleus 22. By the way, I had both implants in the same ear. They removed the single channel and put in the 22 channel. If you have questions as to the possibility of changing to a different brand of implant, please consult you implant surgeon. He will advise you if it is possible.]


Congratulations to New Implantees

Last issue we had a long list of new implantees. This list continues to grow. Following are people we have recently learned about:

Emma Pecchia, Spokane, WA received her Nucleus 22 from Dr. Giddings in Spokane.

Karen Utter, Edmonds, WA. She received the Nucleus 22 from Dr. Gates at the University of Washington.

Catharine Talbot-Lawson, Seattle, Receive the Nucleus 22 from Dr. Gates at the University of Washington.

Diane Terry, Tacoma, WA., Received the Nucleus 22 from Dr. Langman at Virginia Mason.

Jim Brown, Sedro Woolley, WA., received the Nucleus 22 from Dr. Mangham at Swedish Hospital.

Peter Goede, Tacoma, WA., received the Nucleus 22 from Dr. Gates at University of Washington. Dorothy Wood, Tacoma, WA will be implanted March 1 at Madigan Hospital.

She will be the first person implanted at Madigan.

Thanks For Your Support

This newsletter would not exist if it was not for the financial support of our readers. Following are the readers who provided this newsletter financial assistance this past quarter:

Donors Listed

Attention New Implantees

Many of you told me how the stories in this newsletter helped you with your decision to get one. Now it is your turn to return the favor. If you have recently been implanted, we would love to hear from you.

There is probably no one that agonizes over the implant decision more than a parent of a small child. It is a very difficult decision for them to make. If your child has been implanted, would you share your story with our readers? What was it like when the child was first implanted? If it is now a year or more later, would you still make the same decision? How has your child progressed this past year? I now have E Mail. See E mail address on page 6.

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