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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.

Volume 6 Issue 2
Winter 1996-1997

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Telephones, Assistive Devices and Patch Cords

There were about 25 implantees and at least 10 future implantees who attended the SHHH Regional Convention in Portland. One implantee came all the way from St. George, Utah. A person who might have an interest in the Implant came from New York.

There were 45 exhibitors and most of us were like little kids in a candy store. We used our patch cords to try out the many different devices. I hope that some of our readers will write in concerning the items they bought that works very well for them so that we can share our information.

For those of us who use the voice telephone, one of the things many of us bought was the Audex cordless telephone. This telephone has a place where you plug in a patch cord and then plug the patch cord into the processor. It was wonderful!!! I used the Audex Infrared patch cord with the phone. It does not give you the volume that you get with the Cochlear TLP-102, but you can turn your processor up without getting the distortion you normally get when the processor is turned too high.

If you are now using a voice phone and would like to try a cordless phone, I suggest you contact Audex. Their phone number is 1-800-237-0716 and they can advise you the dealer nearest you. If you live in the Seattle area you can test this phone at the Hearing, Speech, and Deafness Center, 1620 18th Ave., Seattle, WA 98122. Phone 206-328-6871. They also have a cellular phone that works with same patch cord.

Several of our implantees bought the new “Wizard”. It is like a pocket talker except that it has both volume and tone control as well as a directional microphone. You can also purchase caps so that it can be used in areas with audio loops, FM, or infrared systems. I hope those who purchased it will give us a report of the next newsletter.

Since there were no Clarion implantees at the convention, I cannot advise as to what worked. This situation will soon change as a few of our readers are now in the process of receiving the Clarion implant To me, getting an implant without patch cords is almost like getting a hearing aid without a “T” coil. Both the “T” coil and the patch cords can add spice to our life.

Be certain to turn your processor off before plugging anything in. Also be certain you are not plugging something into your processor that is plugged into an electrical circuit.. Talk to your Audiologist about what you can or cannot us with your processor. Confirm with the manufacture that the patch cord is approved for use with the implant.

Sergio tells me that he travels by bus to work. He take a portable radio with him and practices listening. This is a great way to improve our understanding skills.

If you can understand speech without seeing the lips and go to church or meetings and have never tried an FM or infrared system, you might be straining to understand where it might not be necessary.

Some of the implant centers carry assistive devices. Check with your audiologist. If they do not, let me know and I will try to find a store that sells devices and patch cords where you can go test them. If you live in the Seattle area and your audiologist does not have devices, visit the Hearing, Speech and Deafness Center in Seattle. They stock an assortment of devices If you find something that works well for you, be sure to share it with us.|

 

AG Bell to Present Program on Cochlear Implants

The Alexander Graham Bell Association, Washington Chapter invites you to attend their meeting from 10:00 to noon on January 11th . There will be a social time preceding the meeting so come early. Coffee, muffins and juice will be provided.

The meeting will be held at the Eagleson Hall (basement auditorium) at the University of Washington. The Eagleson hall is located at the corner of NE 42nd St and 15th Ave NE., two blocks south of the University Book Store. There is paid parking across the street and elsewhere nearby. Buses #7,9,43,48,71,72,and 73 stop within one block of the building.

The programs will consist of a panel of four implantees representing the different segments of our lives. They are Gordon Nystedt, senior citizen and coordinator and founder of the Pacific Northwest Cochlear Implant Club. Bill Graham, founder of Association of Late Deafened Adults, (ALDA) and currently a successful employee of Microsoft. Andrea Langhout, a newly implanted senior in High School. Jordan Jadallah, a young 4 year old boy and his parents.

Come and learn how an implant might change, not only your own life, but the life of your family.

Don’t miss this golden opportunity if you are thinking about getting a Cochlear Implant for yourself or your child. This is your opportunity to meet other implantees or parents of implantees.

The meeting will be captioned so all can understand. If you have any questions, let me know and I will try to get the answer for you.

 

 

Northwest Man Implanted with New Nucleus 24

Kiril Sokoloff, Ketchum, Idaho, is the fourth person in the United States to receive the brand new Nucleus 24. To my knowledge, he is the first in the Pacific Northwest. Kiril was implanted October 8 in New York at the NYU Medical Center by Dr. Noel Cohen.

The Nucleus 24 is just beginning clinical trials in about 10 centers in the US. Clinical Test will begin at the University of Washington in February.

Following is a quote from Dr. George Gates at the University of Washington.

“We will be implanting the Nucleus 24 under the IDE protocol beginning in February, 1997. We have our first candidate signed up. Availability of the devices is the rate limiting factor. People interested in participating must be candidates in the usual sense plus the desire to be a research subject - which will require at least six multi-hour test sessions over the first six months and perhaps more depending on the phase of the trial they enter. There is no financial compensation to the participants.

“The CI24 is a 22 + 2 grounds - one ground on the implant and the other on a wire attached to a ball tip. This means the device can be programmed in monopolar (for better battery life) or in bipolar. It will have a SPEAK ear level processor or a pocket processor that can do SPEAK or CIS or a combination. Moreover, electrode telemetry is built into the device.

“In short, the 24 has everything the 22 has plus some new features. The 24 will only be available through a small number of centers until the trial is completed in perhaps a year and the FDA has the chance to review the results.

In the meantime, the 22 is the state of the art and will be widely available.

People who are ready now or who don’t want to participate as a research subject should go ahead and have the 22 or the Clarion.

“Many people have asked about which device is best for them. I think the car analogy is best: how do you decide between a Mercedes Benz and a BMW? Both are wonderful machines that will get you there in style, depending on how you use them. Same with the two implants; there really is little to choose between them and I personally think candidates should not agonize over the differences. Given the high level of sophistication of current models of cochlear implants, I feel what is between the ears is far more important than what is in the ear. The most important factor is the familiarity of your implant team with the device. You would not want your Lincoln adjusted at a Cadillac shop. Two final considerations; reliability and planned improvements.

You should ask the manufacturer to address these issues before making a decision.”

 

My Hearing Loss
by Kiril Sokoloff, Ketchum, ID

This letter was cut to keep the file size to under 30K. The gist of the it was that he was happy with his experience of getting an implant. He goes on to say:

“In any event, once again I thank your for all of ;your support. I find your newsletter fascinating and of great value. I’ll be most happy to do anything I can to help out. And, since I’m the fourth person in the U.S. to have this new implant, I’m sure my progress will be of use to your readers. By the way, I like Dr. Noel Cohen very much. He’s sympathetic and caring and I was happy with my experience at the NYU Medical Center. Incidentally, the insurance paid all but $500 of the $40,000 price tag.” [Editor note: Kiril has now received his processor. Following is a quote I received by E mail the day after he received his processor. It sounds like the typical reaction from any type of cochlear implant.] “Receive my transmitter yesterday and it was mapped. the difference between my implant and others is that I have four separate programs. Mine has been programmed for quite, noisy, fairly loud, and louder environments. The sounds I am hearing are extremely high pitched with a lot of echoes.” [Editor note: I hope we have an update on Kiril in our Spring newsletter. It will be interesting to watch his development.]

 

Inneraid Implant Equipment for sale

Wayne Boden has switched from the Inneraid Implant to the Nucleus 22. He would like to sell his old equipment, including processor, two earhooks, and two cables. He is asking $2000 but will consider any offer. Contact Wayne Boden, PO Box 445, Eugene, OR 97440

 

Teenager Received Nucleus 22
by Andrea Langhout, Issaquah, WA

“My name is Andrea Langhout and I am a senior at Eastlake High School in Redmond, WA. I recently received the Spectra 22 at Virginia Mason Medical Center; my surgeon was Dr. Alan Langman and my audiologist is Dr. Suzanne Quigley. Before I get ahead of myself, I'll get into the "before implant" details.

“I acquired Spinal Meningitis at age 2.5, which left me with a severe-to-profound loss in both ears. I was immediately fitted with hearing aids and had heard through hearing aids in both ears up until June 1996.

Around that May or June I suddenly went from severe-to-profound to profound in my right ear. I went to the doctor the day after I realized that I had lost my hearing; after 2 or 3 weeks of taking diuretics and steroids and an MRI and CAT scan, the factors associated with the loss were undetermined. My parents had investigated the implant ever since I contracted meningitis, but as I grew older, (we) decided that I benefited from my powerful hearing aids. (We) had doubts about the implant because I was a borderline candidate. Also, we thought that it would be difficult to fit the surgery and rehab process into my busy high school life. But, when I (finally) lost the remainder of my hearing (and I can't believe I'm actually saying that), and after talking to implantees and professionals, I gave it an enthusiastic go ahead. The timing was perfect because I will be accustomed to it by the time I go to college next summer/fall.

“My surgery was on September 18th, 1996. It went extremely well; there were no complications during the surgery. I was back in the routine within 2 days.

Surprisingly, I didn't suffer from post-surgery side effects, such as dizziness, nausea, balance problems, etc. My incision healed very quickly. My surgeon's fears about ossification in the cochlea were proven wrong when he operated; he said that it was "a beautiful insertion."---all 22 electrodes were inserted.

“A month later I was "turned on." It is funny to think like that---that I run on batteries. =) My first reaction was not of surprise or disbelief, but of relief. It wasn't as bad as I had expected, in fact, it was better than I ever dreamed. The sound transmitted by a C.I. is completely different from that of the hearing aid; it is not only louder, but more complete....sort of like glasses....when you put them on, you can see so much clearer. I immediately realized that I was hearing the entire spectrum of the scale....the most noticeable sounds new to me were the consonant sounds. The sh, s, ch, st, k, h, etc, etc, were all distinctly clear. It wasn't low, in tone, like the sound the hearing aids gave me, but more pleasant and natural. I thought, "THIS is what it's like to hear." It was a great feeling. I walked out of the room and heard my footsteps, my jeans rustling, paper crinkling (during the first week of activation, paper and plastic were the most irritating sounds, but that irritation gradually vanished.), and as I approached the elevators, I not only heard the bell (I was able to before), but I heard WHICH door was going to open. I can turn my head in the direction of the sounds I'm hearing. The car ride home was interesting; it was dark and so I wasn't as vocal. But my mom said, out of the blue, "Andrea, I love you" and I had heard her and responded right away. It took me awhile to realize that I had actually done something like that. The music was playing and others were talking, and I could distinguish my mom's voice amongst all the other sounds in the car.

“Even a month later, I am still learning how to hear. Every day is a new day.

I am currently on the BP+ 1 (bi-polar+1) system as opposed to the cg (common ground) system during the first weeks of activation. What is different about my life with an implant as opposed to the hearing aids? Well, the most noticeable sounds are the consonant sounds, of course. People have told me that my speech is not nasal and also more intelligible. Hearing consonant sounds helps me distinguish between words---there are so many words that sound similar with the hearing aids, but with a C.I., you can notice the differences right away. As a result, I don't have to do as much filling in the blanks when communicating with others; same with lip-reading. I can hear so much better that I don't have to rely on lip-reading 100% like before, but I'm not quite at the point where I can carry on a normal conversation without lip-reading.

That is one of my ultimate goals. Additionally, I have noticed that I have more energy because I don't have to concentrate as much on lip-reading and also being constantly aware of my surroundings. For example, as I took a walk around the neighborhood, I heard cars approaching before I saw them. I felt so much safer and relieved to know that the implant helps me in situations where safety is concerned. I've always had two eyes behind my head, constantly watching what's everything; but hearing has spared me the time and energy focused on doing that. It has been the most incredible experience.

“I can also differentiate between birds by their chirps. I don't like the crow at all, but the wren is pretty. The water flowing in the creek is melodious. I love the hearing the wind blowing and the leaves rustling. Music is so much more pleasant now that I can hear the entire spectrum. I had been a very musical child prior to meningitis, and I guess I still am. My friends surprised me with a gift--a favorite CD--and all I did that day, after school, was listen to music....and not do my homework. I find the extension cord with the small microphone connecting to the speech processor very beneficial when listening to music, the TV, and when doing auditory training with my mom.

“Also, in the car, as I'm turning right or left, I can hear the signal very clearly; and same with the light warning signal...I don't have to worry about leaving the signals on like I did before, I can concentrate on my driving instead.

“There have been several situations in school when people called my name from a distance and I responded. I know I wouldn't have been able to do that with my hearing aids.

“I currently have a 30dB hearing loss in the low frequencies and a 40dB loss in the high frequencies. It should stay in that range for awhile, but I hope to improve to the 20's and 30's. It's so hard to believe the difference in my audiogram from before and after. I feel so blessed, and so fortunate, to have such a miraculous device, something that has improved my quality of life in so many ways.

 

 

Update on Implant
by Richard O’Reilly, Princeton, ID

“Was very pleased to meet you at the Portland SHHH convention which was the best convention of all that I have attended including the Nationals. This was mainly because of the Nucleus 22 implant. For the first time I could hear the people attending the products. Before I could get very little out of these conversations because of the noise. At the meetings I was able to understand enough from the speakers so that I could have functioned very well without the captioning and that is a first for many years.

“The implant was installed July 11th. The mappings were August 21-22, September 12, and October 14th. The first three were not nearly as helpful as the last, mainly because of my misjudgment. When using the hearing aids in noisy situations I could not wear the aids the next day because of sore ears.

So I was being cautious with the implant. I told Kami Crandall what I suspected for the last map and it did help. The sounds are still a little muffled and tinny sounding, but it was only eleven days before the SHHH convention since the last mapping which really put me in a position to benefit from the implant.

“I thank you, Gordon, for all your help and encouragement concerning the implant. Your advice and suggestions were tremendously helpful as they were also at the convention. Your energy seems endless and God bless you. I am looking forward for more suggestions in the future as you seem well informed by the information you receive from other implantees and your own experience.”

 

Child Age 5 1/2 Benefiting from Cochlear Implant
By John Rackham/Maggie Caro, Portland, OR

This letter was cut to keep the file size to under 30K. The parents of Rosa, age 5 1/2, describe their pre-lingually-deafened child getting an implant. They go on to say:

“Almost two years later , we have no second thoughts. Although at the beginning there were a few missteps. Rosa really really did not like the sensation when her device was first turned on and at one point slammed the speech processor into the floor of the test booth. (It survived unharmed but my heart almost stopped on he spot.)

“Now Rosa never wants to be without her processor. She even insists on sleeping with it and wakes us up in the middle of the night in the event that the battery has run down.

“Her spoken language has blossomed. She understands a variety of speakers in a variety of settings, with and increasingly higher degree of reliability. She hears and identifies many environmental sounds. She listens to music on her cassette player, singing and dancing along. She’s been in an acting class and a dance class. No one sticks around to explain or interpret for her. She gets the information she needs directly form hearing teachers and hearing peers.

Her progress makes us optimistic that she will be able to function in a mainstream classroom sometime in her primary school years.

“She is a non stop chatter box who loves to bend everybody's ear.. She loves school, likes her books, likes TV way to much. In short, she just has a real Joiede vivre. Only the other day she said, “Daddy, I’m happy.” [Editor note: There are many parents on the mailing list. Do any of you have E mail? If so, would you like to share your E mail address with other parents or implantees or parents thinking of getting an implant for their child? If so please let me know and I will try to set up a list and advise all concerned.

There has been so much misinformation spread by some who oppose the cochlear implant in children. It is important we make the facts available so that other parents thinking of an implant for their child can also weigh the advantage of having their child implanted.]

 

Nucleus 22 Spectra For Sale

For Sale: Spectra Processor and accessories. The Equipment was implanted on a child but was removed due to medical problems. Equipment includes: Processor, set of cords, ear microphone, and lapel microphone, high energy NICAD battery charger, and other incidentals. Asking $2000 or best offer.
Contact Jim & Amy Rice, 105 Jams St #1, Longview, WA 98362. Phone 360-425-4460.

 

Congratulations to new Clarion Implantees

C. Dale Becker, West Richland, WA
Dale is one of the first to receive the Clarion implant at the Virginia Mason Hospital in Seattle. Dale was operated on November 6th By Dr. Langman. Dale came through surgery in flying colors. We expect to have Dale’s experiences in the Spring edition.

Ginny Buckley, Seattle, WA
Ginny was also operated on by Dr. Langman at the Virginia Mason Hospital on the same day as Dale. She also selected the Clarion implant. Ginny said she came through surgery without any problems. We will be looking forward to her progress report in the Spring issue. Both Dale and Ginny will receive their processors in December.

Attn Readers: If you were recently implanted, please send your information to me. Thanks. Gordon

 

 

9 Year Old Implantee
by Teri Miller, Magna, UT

[Editor note: Teri is the mother of Rachael. Rachael was implanted at the University of Utah Hospital by Dr. Parkin. Rachel had bone in her cochlear which made it difficult. She had a lot of infections and then an ear drum that needed to be repaired. I asked Rhonda Marks, Cochlear Representative, concerning infections and implanted children. Rhonda informs me that a study was made and the results were that children with implants are no more subject to infections than to those without.]

“Rachel is nine years old and profoundly deaf. She went to the Utah school for the deaf since she was 2 1/2 years old. In 1993 we pulled her out and mainstreamed her in regular public schools. She has a full time interpreter at school. She loves school and is very active in sports outside of school.

“Since the surgery, she went to speech and listening sessions at the University of Utah two times a week. She has done great and is responding to sounds that she has never heard before. Her maps are a little behind because of her infection and 2nd surgery. But she is doing great. She answered the phone last week. She said that she couldn’t hear who was on the phone but she heard it ring. that was a big day for us at home.

“Her voice is coming along good, and when school starts they will continue speech , listening and other activities to help her use her implant better and teach her to use the information she is receiving. We are excited for her and am glad she had the implant. Rachel is so smart that once she understands what sound is she will take off with it. Her teachers see a difference in her already.”

 

New Spectra Processor

Since early last fall, most of the new implantees are receiving a processor slightly different from the ones that were previously issued. There is no change in anything except for plug in portal. With the new processor, when you plug in a patch cord, the ear microphone is not deactivated. Those of us who have the old processor have a silver ring around the plug-in portal. The new one has a black ring.

Do you have the option to cut off the ear microphone? If any of our readers have received the new processor and had previously used the other processor, we would love to hear from you and your opinion as to which one you liked the best.

 

Update From Homer E Kissinger

This update was cut to keep the file size to under 30K. The gist of the it was:

It states, “I am nowhere near functioning as someone with natural normal hearing but much, much nearer than I have been for 15 or 20 years.”

 

Utah Lady Receives Nucleus 22
By Mary Barrus, St. George, UT

“What a treat! I was just down to pick up my mail, and received the newsletter form you. I was thrilled to say the least. It is the first time I have been able to read about others who have had the implant. It was interesting.

“I received the Nucleus 22 Channel Cochlear Implant system in January of this year. Dr. James Parkins at the University of Utah Hospital did the surgery. I came through the operation in flying colors, only stayed overnight in the hospital. I had my first mapping five weeks after the operation, then one month later, and then three months later. If I am ever unhappy with it, my friends just say that it is nice to have me back among the hearing, and that I shouldn't complain. I do hear very well on a one on one basis, but have a problem if I am in a crowd, and I haven’t been able to use the phone yet, nor listen to music with my satisfaction. I’m sure that it will improve with time, and a few more mappings. Martha McCandless is my audiologist, and I just fell in love with her and Dr. Parkins, and appreciate all that they have done for me.
“I still have a lot of static that is a little annoying, but as I said, my friends just won’t let me complain, they say I am so much better. If people will just look at me and slow down, I never miss a word. I go back to Marsha at Christmas time for another mapping, and am hoping that some of the static will clear out.”

 

Thanks For your Support
Donors Listed

 

National 1997 CICI Convention Coming Up

“Just another reminder to mark your calendar for June 28-30, 1997 for the National CICI Convention. It will be held in Sturbridge, Massachusetts. As I stated in the last issue, I have never been to that part of the country and do plan to attend. Wouldn’t it be wonderful if we could have a turnout of 50 or more from the states of WA, OR, ID, MT, UT, WY, and AK. There are close to 450 on the mailing list so if just 10 percent attended we could easily meet these goals.
National CICI members receive a discount registration fee. So, if you are not a member of CICI yet, I urge you to join today. You will enjoy the fabulous magazine that is published four times a year called CONTACT.

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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