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Pacific Northwest Cochlear Implant Club Newsletter

The official newsletter for the Pacific Northwest Cochlear Implant Club.

Volume 8 Issue 4 Summer 1999

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CICI 1999 Convention -July 23-26

Manhattan Beach, CA

"Blue Skies, sandy beaches, and beautiful weather beckon you to join us for an experience you won't soon forget. We have planned a wide range of workshops that address the needs of potential and current implant users from infants to senior citizens, parents, spouses and family members. Captioning is provided at all sessions specifically for the hearing impaired.

"In addition to educational, self-help, motivational and just plain fun sessions, a number of activities are planned for your personal enjoyment. A Welcome Reception on Friday evening will herald the opening of the Exhibit Hall. Older children will enjoy a trip to the Long Beach Aquarium. A trip to the Getty Museum has been arranged, along with tours of Advanced Bionics Corporation, the House Ear Institute, and the John Tracy Clinic. There will be traditional Awards Banquet on Sunday evening, with a separate entertaining banquet for the children. A Grand Raffle of fabulous prizes will salute the closing of the Exhibit Hall, and a Barbecue Beach Party will complete the weekend." Cost is $75 for a CICI member if you register by May 15th. If you are not a CICI member, you can send in your membership of $18 for an individual and $30 for a family. Cost for CICI Companion is $40. Few conventions have such low registration fees. Children Activities fees are $10 per child, per day, for Saturday and Sunday and $5 per child on Monday.

If you would like to attend the Sunday evening award banquet, It is $35 per adult. The banquets is optional. Other optional activity includes a Barbecue Beach Party on Monday, tour of the Getty center on Friday, and your choice of a tour of the House Ear Institute, or Advanced Bionics or the John Tracy Clinic on Monday.

Hotel Reservations must be made direct with the hotel. Room rates are $98 per night plus tax for up to four people per room. There is no charge for a crib or cot for the child in the room. The Registration brochure states that the room rates apply June 23rd, 24th and 25th. Camille Jones, Chairman, has informed me that she has persuaded the hotel to extend this special to include July 20-29th. If you have called the hotel and they have informed you different or that all rooms are full please get back with the hotel. If you still have a problem, let me know.

I have a few copies of the convention brochure. If you did not receive one, and do plan to attend, let me know and I will mail you a copy.

I attended my first CICI Convention in Vail, CO in 1991. I also attend the one in Atlanta. It was a chance to meet many people with implants. As you are aware, I am a strong believer in patch cords and the use of assistive devices. There is no better place to learn of the items that can make your life more enjoyable. The most knowledgeable person is a fellow implantee who has found the device that helps them. Not all devices help everyone. I would not be able to attend church and understand the service without assistive devices. Come, enjoy, and learn!!!

[Editor's note: Most of the above information was obtained from the Convention Brochure.]

 

First To Receive the

Clarion EPS

 By Greg Heller, Port Orchard, WA

 Near the end of my almost 2 year quest of information about cochlear implants, the staff at Virginia Mason Hospital gave me my options of implant systems available to me. I was offered the new Clarion EPS (electrode positioning system). It is the same as the Clarion "S" system with the exception of the positioner piece.

The positioner is a thin piece of silicone that goes in the cochlea behind the implant array. It acts as a shim or spacer to "hug" the electrode array to the inner wall of the cochlea. This helps to get the electrodes closer to the center of the cochlea where the nerve fibers are located. Advanced Bionics is hoping that this extends battery life due to the lesser distance between the array and the nerve fibers. It is also suppose to help with future mapping strategies due to the equal distance between the array and the nerve fibers.

I was implanted by Dr. Douglas Backous on February 26th, and was the first in the Northwest to receive the "Positioner".

I was activated on March 23rd and am now into my third mapping done by Suzanne Quigley, Ph.D. I am doing great with my new "ear" and I am experiencing a steady stream of smiles as I rediscover the little sounds that I thought were lost forever.

I had my third map March 31 and I still can't believe how well this implant works. We solved most of the "echo" or tunnel effect so people and environmental sounds are taking on a more normal sound. My audiologist set up two different programs and while switching back and forth two, wanted me to tell her which one sounded better. I picked one and told her it made my voice sound very close to what I remember it sounding like before. She asked me to choose once more and tell her which one made her voice sound better. She told me to concentrate on which program made her voice clearer, not just pretty or normal. I chose the one that had the high frequencies boosted somewhat because it brought her speech to the forefront. It sounded rather "tinny", but I could understand her much better. After using the map today at work, I discovered that not only did it bring out
speech better for most people, it did a better job of it in a high noise background situation.

It amazes me that I can hear speech this well in such a short time. My wife and son and I carried on a three way conversation last night. We were all surprised at just how well I understood them and it was the first time that
I was able to have a conversation with BOTH of them at the same time. We haven't been able to do that since the onset of my hearing loss, 7 years ago.

Implant - Added Bonus for Visually Impaired Recipient

by Evelyn Bolyard, Arlington, WA

I am a 51 year old diabetic of over 41 years. I got retinopathy well over twenty years ago, which caused new vessels to grow into the duct in my left eye and also caused blindness. The retinopathy caused my vision level to go down dramatically in my right eye also. Several years ago I lost just enough hearing in my right ear so that
I couldn't hear whispering in that ear. Then in the first part of Sept. 1997 I lost all the hearing in my left ear and a good deal of the hearing in my right ear. (I thought the hearing loss might be related to my diabetes, but the doctors didn't think so. It was classified as an auto-immune neurosensorial sudden hearing loss.)

In August 1998 I got a hearing aid for my right ear which helped considerably. A little over three weeks later I ended up back in the hospital with severe vertigo and complete deafness.

On February 10, 1999 I received a Cochlear Nucleus 24 implant. Dr. Charles Mangham Jr. was the surgeon. He did an excellent job. Everyone that has had him for their surgeon says he is "the best". Janelle LaRosa is my audiologist. I was "hooked up" and had my first map on March 17, 1999.

What a great experience to be able to hear again! The sound was a "hollow" or "tinny" sound at first when listening to voices, but that has calmed down a lot in the two weeks since my first map. I have had three maps and am scheduled for my fourth in a few days. The sound has gone down so I am ready for the next map.

At this point I have only two maps in my WLP. I wear my ELP most of the time even if it isn't quite as clear as the WLP. It is nicer not to have to wear the cord. [Editor's note: A WLP is a waist or body processor. The ELP is ear level or behind the ear processor.]

I have already had several conversations on the telephone without the amplifier. I don't hear every word , but I can sometimes understand enough to know what the other person is talking about. I've tried the amplifier once and right now can hear better without it.

I also have been able to catch words on the radio and have watched complete programs on TV and understood a lot of what was said. I had heard that this is unusual to be able to do, so I guess I'm doing well. I have a lot of trouble with road noise and with background noise in restaurants . Also voices are still hard to understand from a microphone and from a distance. When I listen to TV I have to stand close to it. Music is still awful, as I had been told it would be. But it's getting better. Last week at church my husband wrote down the name of a song that a gal was singing at the microphone, and I understood every word. I was told that I would probably have to watch peoples' mouths to be able to understand, but I find that I don't have to do that. Sometimes it is helpful to watch lips if the person's voice is harder to understand.

The implant has given me a second chance at leading a "normal" life. It is so wonderful to be able to hear again.

My Cochlear Implant A Different Kind of Hearing

By Evelyn Busick-Jacobson

Bainbridge, Island, WA

I was trying to remember just when I first heard about the cochlear implant as a medical way to help people such as myself, and the possibility that I would be eligible for the implant. After looking up dates and events in some of my records, I found it was in the summer of 1996. Although hearing impaired as long as I can remember, I had
recently experienced a significant drop in my hearing ability. My family physician agreed with me that I should have this checked out and referred me to Dr. Langman at the Virginia Mason Medical Center. After his initial examination determined there was nothing medically wrong, I was then referred to the Audiology Department for further hearing tests, and to fit me with new hearing aids. That was when I first heard about the Cochlear Implant. Dr. Langman had explained the need to determine if an improved and powerful hearing aid(s) would help me to hear better before considering an implant. I was fitted with the Phonak Binaural BTEs'. These I wore until my implant in December, 1998.

My pre-implant testing began in the fall of 1998, at the Virginia Mason Medical Center. My hearing and speech comprehension was tested in both ears, with and without the hearing aids. I was given extensive testing for word and sentence comprehension. I did not do well when I had to repeat from word and sentence tests without visual clues. I selected the Nucleus 24 Cochlear Implant System. Dr. Backous performed the implant surgery in December, 1998.

The surgery and recovery went smoothly, my discomfort minimal. I returned to the Virginia Mason Listen for Life Center for my hookup in early January, 1999. I remember being fearful of the sound, even before I heard it. Would it be too loud? Would I even hear it? When I finally did hear the sound, it was a clear and pleasant "bong bong bong"! This was my moment of excitement!

Establishing my volume boundaries and mapping two of the strategies was completed that first visit. It was disconcerting to hear my own voice so loud! Also strange to me was the monotone characteristic of the voice sound. Fortunately this begin to improve immediately so that I could tell when my audiologist was talking or when my husband was talking.

Amazing! I returned home, enchanted with all the sounds I heard, no matter if I knew what they were. Speech was still raspy and tended to be monotone, my own voice in particular. Before the day was over the sound begin to take on pitch and as long as I could use visual perception along with the sound, I felt I could understand speech so much easier than ever before. The volume was wonderful, almost too loud. Certainly no effort to hear normal speech sound. I found myself telling people they did not need to speak loud. I had plenty of volume to hear them but still needed visual assistance to understand. My new adventure had begun.

I have continued to work with the different maps my audiologist has given me after the initial hookup. It is easy to listen to television, lectures and other normal speech sounds with the implant. When I asked her about listening to talking books as a way to practice speech comprehension, she agreed it was an excellent idea, but suggested children's talking books from the library. They come with a cassette and a book, enabling me to check words as I hear them. It works great. The 10 components", placing the speech processor in position to be secure and yet allow access to the controls.

I love the ESPrit, ear level unit, for when I am going shopping or other outside activities. It is so much like wearing a behind the ear hearing aid, something I am somewhat accustomed to. I wear the body unit around home for it does have just a bit better sound and program choices. It is easy to use with a telephone (when I arrive at that stage), as well as other activities such as connecting to the cassette player to listen to my speech tapes or to watch TV with the TV/HiFi accessory. I am glad I have both units, the body worn speech processor and the ear level speech processor. I appreciate and enjoy the flexibility each of them offers.

I have been careful to cover my head and my unit whenever I am outside in the rain. With so much heavy rain and high humidity this winter, I have been diligent in putting the units in the dry pak several nights a week. The ESPrit unit is especially sensitive to moisture. I use the rechargeable batteries that come with a charging unit for the body speech processor, a big savings on batteries. I love those "bongs" going off in my head to alert me to the low battery power!

This has been such a big success for me. Most of the implantees I have talked to feel the same. It goes long way towards giving us the hearing we need to live our lives more easily, no matter what our age or goals in life.

Frustrations with Implant

By Sadao Kuroiwa, Spokane, WA

I received an implant by Dr. Neil Giddings, a member of Spokane ENT in February 1999. My udiologist's name is Ms. Erin Somers. I have a Clarion system.

The sounds are total confusion because I have to relearn the language to different sounds to what I was accustom to before.

At 75 I have to relearn English for the first time ever. I discovered that I left my lites on after removing my ignition key as I now hear the warning sound. Also the same sound if I leave my key in the ignition. Because my understanding of speech has taken a step back, I am told to be patient. As before, TV and the phone are, at this point useless. Thank you for your inquiry.

[Editor's Note: Since he states that he was implanted in February and the letter is dated March 27th, I assume he has had his processor a very short time. I am hoping we hear from him again by the time of the next newsletter. I suspect things will improve dramatically for him by then.]

Enjoying Implant

By Rob Williams, Sublimity, OR

In November of 1998 I was evaluated at the Seattle Regional VA Hospital as a possible candidate for a cochlear implant. A team comprised of Nancy Cambron, my Audiologist, Dr. Kuntz, my Otolaryngologist, and Dr. George Gates, put me through three days of intensive tests including a cat scan. The preliminary tests were a bit unnerving. Nancy Cambron and Dr. Gates both told me that I would probably have balance problems. Dr. Gates told me to stay off of ladders, and to make certain someone was with me on my morning walks to be available to steady me. My Implant Team determined that I was an excellent candidate. Since I have always had very good balance, I was concerned about this potential after-effect, however, I felt all along that a priceless gift was placed in my hand for the taking, so the risk of vertigo problems seemed minuscule to me placed alongside the opportunity to hear once again.

Surgery was performed February 1, 1999. It went very well, and the next morning, Dr. Kuntz, stopped by early and told me that I would be able to go home that morning. She had hardly left the room when it felt as though my head was literally on fire. I reached back to check the pillow to make certain it was not on fire. The burning sensation spread down all through my body. I called for the nurse. I told her it felt like I was on fire. She stuck a thermometer in my ear then said, "Well, you're not!" And promptly left the room.

A few minutes later my wife Carolyn and daughter Debbie came in. I told them what had happened and my wife, who is a nurse went to the nurses' station where Dr. Kuntz was reading charts and told her what had happened. She ordered an immediate change in medication. Apparently I was allergic to something. I settled right down.

I also want to say that was the only bad experience I had with staff. The rest were wonderful. I was nauseous and had dry heaves but it did not last long. They kept me until late afternoon to make certain the nausea was under control.

I was pretty groggy on the way home, but once there, I started feeling a lot better. I had trouble staying awake for about a week and did experience some vertigo instability. By the end of the week, that was all gone and I felt fine. I have not had any recurrence of balance problems and have been on and off the ladder, shot baskets in my driveway and have taken morning walks by myself with utmost confidence.

Nancy Cambron activated the Nucleus 24 Speech Processor March 1 so it was exactly one month between the surgery and the activation. The moment she turned it on, I was able to understand what she was saying. Carolyn was more excited than I but I can tell you that it was the first time in almost 2 years since I had been able to understand speech. The past year, I couldn't even hear people's voices ... without a hearing aid, not even my own. Her voice sounded monotone and like she had filled her lungs with helium. The monotone effect has not gone away entirely even yet, but it's much better than it was.

That same day, Carolyn and I had dinner at Ivar's on the waterfront. It's a noisy environment with hardwood floors and the clatter of dishes. Some of the people around us were talking very loud. I was able to understand almost everything Carolyn said, although I had a lot of trouble understanding the waiter. (I have discovered that I can hear women better than men).

That evening we went to Southcenter Mall near our motel and I asked to play a keyboard. I played my arrangement of Roger Williams' arrangement of Autumn Leaves. If you are familiar with it, you know that it is played the length of a piano keyboard. I could hear every note but it didn't sound like a piano ... it sounded twangy, but I could tell the difference in pitch.

Nancy continued to fine-tune the speech processor the next two days, and on Wednesday of that week, she tested my ability to hear on the telephone. I could understand her questions and respond. My situation with the phone is unusual. I am told that it normally takes 6 months to a year to really be able to understand speech and some never get to that point.

That evening I called my daughter here in Sublimity and she estimated that I was picking up 60% of her words.

We stayed in Seattle during the entire activation so on Thursday of that week, we took the tour of Underground Seattle. The guide spoke very rapidly. I was able to understand almost everything he said, except when he turned his back to me.

On Friday, Carolyn and I spent the day along the beaches of Puget Sound. I could hear the sea gulls and the crows and recognize their sounds. I could also hear dogs barking and the birds singing in the trees, although they hardly sounded like birds.

On Saturday we attended a conference at the University of Washington entitled, Beyond Hearing. My surgeon, Dr. Gates was the moderator and he also led a couple of sessions. I had a good visit with him and he was excited over my progress. They had captioning during the entire day. I found that I could understand most of the lectures, but would get tired and concentration became difficult. When that happened I turned to the captioning for awhile then it was easier to go back to the lecturer. I also met several people I had been sending E-mails to who had cochlear implants. That was exciting as well. One lady congratulated me on my ability to hear before I opened my mouth. She said that my daughter had sent a general E-mail to everyone on my list saying, DAD CAN HEAR.

I had one experience in the men's rest room that was really frustrating. I saw a man with a cochlear implant so I started to talk to him about it. The acoustics were very live with marble walls and I couldn't even hear what I was saying, let alone what he was saying.

On Sunday, we visited a church that was located not too far from our motel. The first hymn they sang was one I was not familiar with, and what I was hearing was totally unrelated to what was printed. But when they sang the simple praise choruses, especially the ones I knew, I could hear them well and sing along with them, although very softly because I wasn't sure I was in the right key. I was also able to hear the sermon, something I haven't been able to do for a long time.

Yet another test came when some people invited us to join them for lunch. We ate with a group of people from the church and it was difficult to hear. I used the mike that comes with the speech processor quite a bit and that helped.

Since I've been home, I have talked with people on the phone, including my granddaughters and have gotten by nicely by using the special patch-cord that comes with it. I plug my patch-cord into the TV and can hear every word clearly. I was driving to a breakfast meeting the other day in Salem and I hear Paul Harvey News for the first time in about 4 years without any patch-cord. I use the patch-cord for my portable radio here in the office and I also found that if I plug the patch-cord into my music keyboard I can hear it much better.

Music, however, is probably my greatest disappointment, although I was forewarned. I am finding it virtually impossible to match my voice to the tones I hear, especially from a G above middle C on up. I can sing much better when I'm deaf than I can with the cochlear implant.

My daughter, her husband and the grandchildren were here during Spring Break. And I could talk and listen to the granddaughters again. They were pretty excited about that. My daughter told Carolyn, "I feel like I have my Dad back again."

My own voice was a surprise to me, because it sounded more like my recorded voice than the way it has sounded to me over the years. The adjustment was probably easier for me than most because I've done a lot of radio work over the years, so I'm used to hearing my voice by recording. It is settling down though and it sounds much more pleasant than it did right after the activation. It's hard to describe, but if I listen to my voice under the overtones, it is much richer in quality. I find this is also true of most men's voices,

Recently, I was driving in my van and had the radio on. A familiar voice belted out Autumn Leaves. It was none other than Nat King Cole and I was able to hear the music and understand the words. I went right out and purchased a three-volume CD set of Nat King Cole which I play on my computer and am able to readily recognize the songs I know.

The music keyboard is interesting too. The synthesized banjo preset sounds the closest to normal. Grand piano sounds authentic in the bass register, but twangy and difficult in higher frequencies. Organ presets are particularly difficult and indiscernible.

Yes, there are some frustrations with the cochlear implant, yes, it is difficult to hear people in a crowd or noisy environment, but this great technological gift has restored my ability to converse with people once again. The dry-eraser boards and the magic doodle boards have been laid to rest and everyone I talk to share my excitement and enthusiasm for this great miracle. I would not hesitate to recommend it to anyone who desires to hear again.

A Miracle

By Joan Andrews, Punta Gorda, FL

Already two words sum up my cochlear implant experience: A MIRACLE! Loren Bartels, MD, FACS, Director of The Tampa Bay Hearing & Balance Center in Tampa, FL did the surgery on February 11th. After an overnight in the hospital my husband drove us home to Punta Gorda, 120 miles south of Tampa. Two weeks later during my post op check up, Dr. Bartels gave me happy news . . . my healing was so well along that I could schedule my hook up in two more weeks rather than the expected four.

With our home full of house guests and day visitors, the two weeks flew and on March 10th we returned to Dr. Bartels' office for the big day. Donna Kulwicki, M.S., FAAA, CCC-A carefully proceeded with the hook up of my outer Clarion-S equipment while my husband, daughter Jane and friends looked on. When Donna signaled that all was ready I waited and waited for sounds to began. Finally I began hearing faint beeps, and moments later realized I heard a voice. Suddenly I understood Donna asking me if I can hear her. "Oh yes, and I can hear my own voice too!!" Then I heard another voice saying, "Joan, can you hear me?" I turned to my husband and asked him if he had just asked me that question. He said yes! . . and with that the Miracle of hearing was underway. More fine tuning, more voices, more clarity, more understanding words, and yes, many happy tears of joy. When we left the office I was already enjoying easy conversation. It was marvelous.

Later during lunch with my husband and Jane, I laughed when I heard the beautiful sound of ice tinkling as the waiter poured ice water into my glass. The waiter looked at me as if I was a bit off center. After all, who laughs at filling a glass with ice water? What fun!

My husband and I talked constantly on the way home. I was hearing him clearly for the first time in years. This seemed unbelievable but it was happening.

As I write this less than a month later, I've had dozens of happy new hearing experiences. Understanding some TV without captions; picking up sentences on a radio; understanding a speaker on a microphone at an outdoor event; presiding over an all day FLASHHH meeting and relying more on my implant hearing than on CART; understanding all the board members at our local chapter SHHH board meeting; having real conversations at last with old friends, and most precious of all, being an active participant within our circle of beloved family members. The hated barrier of lost hearing that separates us from our loved ones, has melted away. I understand my grandchildren (15, 5 and 4). We talk about serious things and laugh together about funny things. All this is taken for granted by hearing people but, to one such as I who has been on a twenty year journey to deafness, this metamorphosis and the joy it is bringing my loved ones and me is indescribable.

My thanks to Gordon and all of you whose stories I've read and referred to often for support and information. A special 'hat's off' to Fran Czarnecki in New Hampshire, whose implant story appeared here recently. Fran and I have been pen pals for many months. This changed last week to becoming telephone pals when I called her on my speaker phone. We had a marvelous conversation, most all of it understandable.

What a precious moment that was. . . two recent implantees visiting on the telephone!

My next precious moment will come soon when my beloved husband and I celebrate our 49th wedding anniversary and I will be able to hear every word he says.

[Editor's note: Joan sent me a follow up stating she has had 3 more mappings since hook up and is scheduled for 2 more before the end of April. ]

Teenage Enjoys Implant

  By Carla Drennen, Kelso, WA

  [Carla was listed in our "Congratulations" column in the Winter newsletter. Her update arrived just as the last newsletter went to press. She has the Clarion and was implanted by Dr. Backous At Virginia Mason.]

I am very happy with my implant. It is working very well, but it takes awhile for me to catch on to what others are saying. Hyla Dobaj is very happy with my progress, although, it is very tiresome going back and forth from Kelso to Seattle.

I encourage others who needs a cochlear implant to get one. It may be sore for a while and then having to wait for a month for it to heal, but it is worth it. Also for those who play instruments for music and you wear hearing aids and they don't work for you, ask if you would benefit from a cochlear implant. It just might make it a whole lot better. I am fourteen-year-old and in ninth grade and I play the clarinet which I have been playing for four years. I am also in the Southwest Washington Youth Symphony, and play for my high school band which is also the marching band . Now with the implant I have taken up, teaching myself with a book, the piano. I feel this implant has been very good experience and made my life a whole lot better each time I come home from Seattle.

 

Delighted with Implant

  By Kathy Kifer, Eugene, OR

  Gordon, I'm delighted to report that my implant is working and it's just wonderful! The surgery was done at OHSU in Portland by Dr. McMenomey. Don Plapinger is my audiologist. The hook-up was just a week ago so I'm still a "newbie" at using this equipment (the Nucleus 24 with the ESPrit processor). The recovery from surgery was easy, as was the preliminary testing. Even the insurance matters were easy and in fact Blue Cross is picking up more of the cost than I thought they would based on my policy. So I'm very happy with the whole experience!

Before the surgery I did a lot of research on the two decisions I needed to make: which brand of implant, and which ear to implant. The Internet provided tons of information and opinions on both issues. I would have been happy with either the Clarion or the Nucleus and only chose the Nucleus because it was the one my C.I. center had the most experience with and also because the ESPrit ear-level processor seemed to be popular with those who have it. My ears had similar audiograms but I implanted the worse one because I was still getting 20% correct on the word test with an aid in my better ear. I had not used an aid in my worse ear in 12 years, which was some concern, but it still had residual hearing.

The first sounds I heard were just like C3PO, the robot in Star Wars. Just whistles and beeps. But the whistles started to sound a little voice-like within a few minutes and by that evening I could understand voices on the
radio and the telephone! The voices are still very much like Alvin and the Chipmunks, but pretty clear. Using my aid in my other ear is working out very well and I hear best with both on. The aid gives me the natural sound of the voice and the C.I. supplies the crisp, high frequency part that makes the words clear. In the next couple of months I will probably get the belt-level processor as well, so I can use the new faster coding strategies that are coming out. For now, I am VERY happy with my choices and I'm grateful to the professionals who made this miracle happen. Also I should acknowledge that it was my friends at SHHH who gave me the info and the push I needed to get this done. Now of course, I only wish I had done it sooner!

 

Four Year Old Loves to Hear

  By Kim Schafer, Spokane, WA

  Our precious little Maddy was 2 1/2 month old when she contracted meningitis, and became profoundly deaf from it. We immediately jumped into learning sign language, getting hearing aides, starting speech therapy, joining the local parent support group PANDA, and gathering as much information about deafness as we could.

After wearing hearing aides for 2 1/2 yrs with no response, and praying about making the right choice for 1 1/2 yrs, we made the decision to have the cochlear implant done. Maddy was implanted with the Clarion in Dec. 97 just before she turned 3 yr. old. She has now been turned on for 15 months and is doing wonderful.

She is delighted with all the new sounds and voices that she hears daily. She has become dependent on the implant as if it were a pair of glasses to help her see. It helps her to hear all that she was missing. I really do feel she enjoys being able to participate in conversations more now. She immediately alerts us when the battery dies, asking us to "please change the battery".

The implant has given her a wonderful sense of independence in the social world. She truly loves speech now, and I truly believe that has to do with how much auditorially she is getting from the implant.

We are starting to drop some of the signing, making her really listen the first 2 times, then if she does not understand, use our signing skills. She seems to be making more progress with her auditory skills, and her speech. We are so very proud of her, and love to see
her happy.

One problem that we had was with the harness that holds the speech processor. It ripped out on the seam, irreparable, and talking to a friend who's son has the same implant, his ripped out in the same place and had to be replaced twice. We now use the fanny pack, which works well for her age, but hangs below her shirt, and does not allow her shirts to be tucked in, meaning no body suits. Any suggestions, or carriers that families have found work well for this age?

Thank you for your wonderful newsletter. Having a place for information sharing is an awesome resource.

Congratulations

Rio Stacey, Seattle, WA. Rio received his Nucleus 24 from the University of Washington. His surgery was done by Dr. Gates. Sue Sanborn is his audiologist. He received his first map on March 3rd

Sherry Niemeyer, Elmira, OR. Sherry was implanted at OHSU by Dr. Schluening. Her Audiologist is Don Plapinger and has the Nucleus 24

Monica Healey, Fair Oaks, CA Monica had surgery on March 11th and will be getting her processor and first map on April 8th. She has the N24 system and Dr. Roberson at the California Ear Institute performed the surgery at Stanford Hospital in Palo Alto, CA.

Jesse Carpenter, Baltimore, MD. Jessie is two years olds and was implanted 7 months ago.

Beth Eisenhood, Seattle, WA. Beth was implanted in February by Dr Gates at the U of W and has the Nucleus 24.

Dorothy Weaver, Bremerton, WA. Dorothy will receive the Nucleus 24 at Virginia Mason by Dr. Backous on April 21.

Leland R Robinson, Bainbridge Island, WA.Leland is scheduled for surgery at Virginia Mason on April 14 by Dr. Backous. At the time I saw him in March the type of implant had not been decided.

Willy Paine, Kirkland, WA.Willy received his Nucleus 24 from the U of W. Dr. Gates did the surgery and Sue Sanborn is his Audiologist. Willy was born deaf. I met Willy prior to surgery and he appeared to understand nothing I said unless he lead the conversation. I recently saw him at a meeting at the U of W and was delighted to see the tremendous improvement that has taken place.

Sid Shell, Everett, WA.Sid received his Clarion from Virginia Mason. Dr. Backous did the surgery and Carol Brazil is his Audiologist. Sid states he will have an article for us for the next newsletter.

Bill Henderson, Sandy, UT.Bill has the Clarion and received his processor in January.

[Editor's note: We hope some of the people mentioned in the Congratulations column will submit their stories to us for the next newsletter. Deadline will be July 1 so this gives you time to get used to your new way of hearing and to let other know what the experience is like for you.]

Cochlear Implant

Presentation in Spokane

Holly Segel, M.A. of Advanced Bionics announces that they will hold an implant forum in Spokane, WA May 10th at 7:00 p.m.. It will be held at Cavanaughs Inn at the Park located at West 303 North River Drive in Spokane. Phone # 509-326-8000.

To register for the forum, please call Holly Segel phone 800-678-2575 Ext. 4779 or e-mail:

care@advancedbionic.com

This forum is sponsored by Advanced Bionics Corporation, Spokane ENT, Audiology Research, and Rockwood Clinic.

If you require real time captioning or assistive listening devices, please advise Holly at time of RSVP.

 

Are you on our mailing list? If not, and live in WA, OR, ID, UT, NV, WY, MT, or AK, let us know and we will add you to the mailing list.

Virginia Mason Holds Monthly Meetings

The Listen for Life Center at Virginia Mason Medical Center has begun monthly meetings for implantees or those thinking of getting one. The meetings are held on the 3rd Thursday of each month from 7:00 to 8:30 p.m. If you would like more information contact the Listen for Life Center phone: 206-341-0948 voice or 206-223-6362 TTY. E-mail: Lsnforlife@vmmc.org

Changes For Children's Hospital and Regional Medical Center

By Wendy L Russell, M.A. CCC-A

Big happenings are in the works for the Division of Pediatric Audiology at Children's Hospital and Regional Medical Center! As many of you may know, Jill Bargones, Ph.D., has retired as Coordinator of the Cochlear Implant Program with the birth of her second child. She will be greatly missed by the implant team and by the many families she worked with, as she was a key player in building the program to what it is today. Wendy Russell, M.A. is a pediatric audiologist and has been with the program since it's inception in 1994, and is now the full-time Coordinator of the implant program. Joining the team as the full-time Aural Rehabilitation Specialist is Susan Naidu, Ph.D., who has been active in working with families with children with hearing loss in the Seattle area since 1984. Susan will work with children who use hearing aids and other assistive devices as well as provide on-going aural rehabilitation for children with cochlear implants. In addition, Wendy Russell and Susan Naidu will be available for school in-service visits. We look forward to these exciting changes, and hope to continue to serve families and educate the community on options for children with hearing loss.

 

Readers Have Their Say

Cellular Phones

By Bill Henderson, Sandy, UT

 

If you have any advise to offer regarding cellular phones, either analog or digital, I would appreciate it very much. I have been using a Clarion cochlear implant since January and am making satisfactory progress. However, I am interested in discovering the best possible arrangement for using a cellular phone with the cochlear implant. The implant is in the right ear. I have some speech discrimination in my left ear with strong amplification.

[Editor Note: Cell telephones have probably become one of the hottest items for discussion among both hearing aid and C.I. users. It seems we can find a analog cell phone that does work with the C.I. But what about digital cell phones? Has anyone found one that works well with your implant? If so, what type patch cord do you use? I assume the patch cord may vary depending on if you have a Nucleus 22 or 24, Clarion, or Med-EL. Also if it is a BTE or body processor. If you do use a cell phone, please advise the type implant your have, the patch cord you use and if the phone is analog or digital. I will publish the information in the next newsletter. I also plan to attend the CICI convention and learn as much as I can about Cell phones. If any of you have one, and plan to attend the convention, I hope you will get in touch with me and show me the attaching equipment you use.

The same applies to regular phones. I have received a lot of inquiries as to what is the best cord and best phone to use with the implant. Many of you that have contacted me have the suction cup and hate it. Some like the suction cup or no patch cord. The majority, that have contacted me, prefer to hold the phone in the natural position and use a patch cord. I would love to hear from all users who use a voice phone, (Nucleus, Clarion, Med-El, BTE users) what phone and patch cord you find works best for you.]

 

One Year Later

By David Burlingame, Bremerton

Yesterday I went to Seattle for my yearly check up on my Cochlear Implant and my progress. After doing another mapping and checking a few things, We did some word recognition tests. Last year I scored about 14 to 20 percent correct on the tests with my hearing aid. One year later with the implant the Score JUMPED TO 65 to 70 percent correct! The funny thing is I scored better when they added background noise to the test ( like noise at a party or something) On that particular test I scored 78 percent! I thought maybe that it was due to me relaxing more with something to listen to. When the sentences were being said I was able to hear or understand more of it.

Boy some of those sentences were very long and I was surprised as well as the audiologist when I got it right. I was having fun doing the tests. Its amazing! Now some of you who haven't seen me in awhile, don't be surprised If I understand you if you are talking behind my back you might never know....I wouldn't say anything but I would get even... HAHA

Enjoying Nucleus 22

By Ray Mooney, Deer Park, WA

 

Assistive Devices

By Barbara Orr, N. Salt Lake, UT

 

I have one concern and it's about assistive listening devices. I have had no idea there was anything out there until I started reading about them in "Contact." Then you mentioned them in one of your newsletters and it's been obvious from all the letters, people are using everything. I have no idea what they are or how to go about finding out. Audex has a full page ad in every "Contact." so I wrote to them and they sent a little catalog, which isn't a lot of help. I e-mailed them to find out a doctor that has the products to view them and the doctor they said to contact has no knowledge of cochlear implants and has none of the devices and didn't even know they had a cell phone that was cochlear implant compatible.

I talked with another audiologist from Arizona State University this past year and he was the one that told me about the Williams Telephone coupler and they sent me one. It has been wonderful and has been the whole difference between talking on the phone or not. I now use the phone with it. He was the one that also told me about the Comtek and I could use it at church. I had known of the Comtek but never realized I would be able to use it by plugging into it with a jack. I bought one this past year and it has been fantastic. I can't believe I have gone all these years getting so little out of my church meetings. I understand everything now and thoroughly enjoy the meetings. I keep wondering what else is out there that I know nothing about but would change my life for the better. Do you have any helps on who or where I can go to find out what is available?

I have saved some issues of "Contact" that have talked about ALDs and I know there's something for the movies (I haven't been to a movie in years) but have no idea how to even go about looking into it. Also, the theatres and symphony hall here only have the head, or earphones, available, They

the Sennheiser —but have nothing I can plug into my processor.

[Editor's note: Most of you that know me well, know that I believe our return to the hearing world just begins with hearing aids and implants. Assistive devices can make life so much more enjoyable. As Barbara stated, they can be a wonderful help in church. I always use an FM system in church. One Sunday someone pushed the off switch in error so I could not pick up the service with my FM. I understood nothing so I went home. I do not like to sit through a service where I do not understand what is being said. But things are getting more complicated. When I had the older Nucleus 22 I found the Comtek patch cord the best over all cord. I didn't have to carry around a pocket full of cords. But now I have the upgrade. With the correct patch cord the head mic stays open. But that patch cord is only good with a few items. At the church they use the Telex FM. The cochlear cord will not work with it. So I use my Comtek cord. It is bad because the Comtek cord does cut off my head mic, but at least I can hear the service. I do not know if the Comtek cord works with the Clarion or the Med-El. I plan to attend the CICI convention and watch to see what the Clarion and Med-El people are finding works best for them. It is too bad that each manufacture cannot make one versatile cord that could be used with almost all equipment. Most people don't want to carry around a suitcase full of patch cords. First of all they are too expensive. This past week I lost my Cochlear cord so had to call in a get a new one. It was $90. I do not mind paying for it if I could use it most of the time, But I can't. It has very limited usage.

Now the problem will even be worse when all the manufactures come out with the BTE. I assume all will require different patch cords than what is used with the body processor.

It is true that most theatres use infrared and use the Sennheiser headset. The newer ones do have a plug in so you can plug you implant patch cord into them. But also most infrared manufactures now also make the box type (like the FM unit), so you can plug your patch cord into it.

I would like to hear from all implantees that use assistive devices to let me know what patch cord and device works best for you. Please don't be shy. The information you share might benefit another person.

Enjoying Spectra

By Ed Markham, Burley, ID

I am getting along pretty well with my Spectra 22. I still have trouble with the telephone and TV. I have to have my TV caption and use the TTY telephone.

I have been hearing a lot about the Spectra 24. I have been wondering about trying it. Is it very expensive? I haven't talked to Mareen about it but is about time I had mine mapped. I can't hear in crowds or noise. Even on soft, the noise sometimes is terrific.

I have wondered if sometime they could put another space between soft and normal. I need to be facing people to hearing very well. I still have problems of staggering but am taking exercises.

I tried the Beamformer for a while but had little success. It seemed the batteries didn't last very long.

My voice tends to have a hoarse or hallow sound to me. Others sometimes tell me to talk louder and I am talking as loud as I can.

Thank you for hearing my complaints. It is still much better than it was. I don't know whether I told you I became deaf immediately. I have had problems almost all my life and was totally deaf in one ear for a long time. When I lost all my hearing there was just a pop in my ears and that was it.. Thank you again. I enjoy your newsletters very much.

[Editor's note: You cannot just switch from a nucleus 22 processor to a nucleus 24. It would require new surgery replacing the part in the skull. The next change for the Nucleus 22 will be the behind the ear (BTE) processor.]

Gordon L Nystedt

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