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Pacific Northwest Cochlear Implant Club Newsletter

The official newsletter for the Pacific Northwest Cochlear Implant Club.

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Volume 7 Issue 2
Winter 1997/1998 

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Enjoying CI24

by Catherine Clardy, Buhl, ID

My cochlear implant surgery took place on July 30th, 1997 at the University of Utah Hospital in Salt Lake City. The Surgery was performed by Clough Shelton, M.D. I received the Nucleus 24. The mapping was done by Marsha McCandless. I received my 1st mapping on September 18th and have two more mappings since then.

When Marsha was doing the 1st mapping, I wasn't able to distinguish between the tones I was being given. It sounded like a lot of noises jumping around in my head. It was most annoying and upsetting as I felt that I was going to understand what I was hearing. All of a sudden I realized that I could hear and was understanding words and entire sentences! It was truly a miracle to me to be able to hear once again.

I still cannot tell what most of the sounds and noises are. I can hear the radio or television but not know what I am hearing. The telephone and microwave are very different sound than I remember. I was only without hearing for 9 months, so many sounds are close to the same and get better as time goes by. Paper rustling sounds so loud! The dog barking is like a fog horn. I'll have to learn to redefine my sounds on some things.

Just had my 3rd mapping and already have a 53% comprehension. I could understand entire sentences sometimes but not vowels. They are hard for me. I can use the telephone but have to use the Cochlear patch cord. Have tried to use the television patch cord but cannot connect it to my TV so will have to use the closed captioning a while longer. I can pick out words from the dialogue but not enough to understand yet. The 3rd mapping has given me a program so I can try to hear music. Haven't had time to try it today, but hopefully it will let me enjoy music once again.

I am doing very well. Marsha said I as doing about what most are doing at the 3 months mapping. I hear so many things now that I didn't even hear with my hearing aids.

I used the infrared headset for TV and concerts, etc.. That is the only assistive device I used with my hearing aid. Would be glad for any help you might give me for the assistive devices for the Nucleus 24. I was given several patch cord or such with the 1st mapping but haven't felt well enough to work with them. Have had other medical problems.

Hope this will help others or give them some idea about what each one of us has done and how well it has benefited us. I cannot imagine life without the implant now that I have it.

Oh, I was in one end of the house the other day and heard something drop. I could not tell what it was and I went to the other end of the house. It had been the cat. She jumped down off the sofa. the house was quiet and I could hear the noise. My husband had seen her jump and told me what it was.

I will be looking forward to reading your next newsletter to see how others have fared with their implants.

[Editor's note: Catherine was able to use the phone immediately after her first mapping. She talked to her mother in Texas for well over and hour and also talked to her son. She stated that she was able to understand over 90% of what was said. When she first thought of the implant, she knew nothing about it, nor had she ever met a person with one. It is your stories to this newsletter that help people like Catherine. It is her story that will benefit someone else. Please keep your stories coming! It is important we share with one another.]

 

Implant Social Sunday January 25th

 

I am Feeling Hard of Hearing Again

by Sarah La Gow, Issaquah, WA

Let me begin by saying I was born severe-to-profoundly deaf and was fitted with hearing aids as a toddler. I was raised as an oral deaf person and am perceived as hard-of-hearing by most people who know me. I've done just about everything any normal person would do, including playing piano. I mainstreamed in public schools and have completed my masters degree in physical education. I have even performed as a professional cheerleader and dancer, and am currently teaching in a public high school.

Two years ago this month (October), the residual hearing in my dominant ear disappeared for unexplained reasons. I experienced instant vertigo, nausea and tinnitus only to be relieved by removing my hearing aids, I spent the following 18 months in total deafness undergoing many different kinds of medical treatments to try to restore my residual hearing, but to no avail. I was also misdiagnosed as having secondary Meniere's disease but found the symptoms were present only when I tried to use my hearing aid in my dominant ear. I did everything possible before I explored the possibility of a cochlear implant, including an exploratory surgery to repair holes in the inner ear membrane.

Having been deaf all my life (and in and out of the deaf culture in early childhood), I suppose it was natural to feel resistant towards the implant, to tell the truth. I have received several cochlear implant newsletters from Gordon which were greatly appreciated. To be honest, however, I could not relate to those who were hearing to begin with and then were implanted after sudden hearing loss. I wanted to meet or communicate with someone "in my shoes" (born deaf or became deaf as a toddler, wore hearing aids, then were implanted). Finally through Dr. Suzanne Quigley (one of my audiologist), I met Andrea Langhout. Andrea was implanted just before I was. Along with her mother, Mollie Langhout., Andrea met with me at a cozy coffee cafe. They answered all my questions and really inspired me. I made my decision right there to go for it.

I was implanted with a Nucleus 22 cochlear implant at Virginia Mason Hospital on February 5, 1997 By Dr. Alan Langman. My first mapping appointment was a few weeks later on February 25th with audiologists Laura Comer and Suzanne Quigley. I kept my expectations low at this first mapping appointment knowing that there were still swelling in my ears and the implant array itself had just started to heal. My hearing was fuzzy at first and I could only hear one tone. I had six more mapping appointments over the next month-and-a-half and each time my perception of hearing would improve. I also had the good fortune of having to practice hearing at school with all those high school kids. The following are some highlights that I experienced with my implant in the firs two months.

Within a week following the first mapping appointment, I started to make associations with syllables and lip-reading. Some sounds were louder than the old hearing aids and I heard some words without lip-reading and could repeat them.

I caught a student talking in Squad Six as I was responding to a student in Squad Two during PE class (I teach Phys. Ed. and Aerobics).

I caught a student making adjustments at a weight station(in the weight room, of course) when he was told not to and when he asked how I knew he had made the adjustments, I told him I heard the clicking sounds from the weights. The WHOLE CLASS APPLAUDED!

I was able to follow discussion in most staff meetings and did not need interpreters.

I heard birds making sounds, even across a football field. It is unbelievable!

The turning point occurred when a student asked me a question using a full sentence and I felt I heard every word. After I repeated his question to him, he said I was correct! After that incident, Suzanne and Laura decided to test my hearing (early April). Sure enough, my hearing. skyrocketed in the high sound range when compared to my old hearing aid. My speech discrimination was almost back up to where it as before I lost the residual hearing.

Over time, I was finally able to hear and understand my toddler son. My husband said he now has his hard of hearing wife back.

By mid-April, I decided to experiment and plug-in the telephone adapter. I phoned my husband at work and heard about 90 percent of our first conversation. I'm now able to use the phone again; preferably with those who know me, such as family and friends. I also called and surprised Laura and Suzanne on the phone! They did not expect me to hear the phone this soon and I had no problem understanding them.

This summer was spent experiencing new sounds. I constantly asked what I was hearing (I had never heard some of these sounds with my old hearing aids). My across-the-street-neighbor whistled for his dog and I asked my husband "what was that high sound I just heard." Progress is being made hearing music. I started out as hearing a big blur and now I am enjoying percussion pieces and simple melodies. The piano sounds different from the way I remember it with my old hearing aids but, hopefully, I will enjoy it more as time goes on. I am also able to teach aerobics with my implant on (except Step bench because of the risk of electrostatic discharge).

I feel more confident now that I can hear some sounds again. Total deafness was quite an adjustment and those 18 months were a very difficult time. I'm glad to be able to experience hearing sounds again (even though it's a new way to hear, different from hearing. aids). My ongoing project now is to create clothing accessories for the processor, particularly for women.

I am currently undergoing mapping appointments to upgrade my processor to a more advanced mode so I can gain more benefit. Like I mentioned earlier, it's nice to be hard-of-hearing again.

 

BEAMformer Update

In the last issue I had promised that we would have the reports of all of those who have tested the BEAMformer. Unfortunately, I am aware of only one other person who has received theirs. The rest are still waiting. It is also my understanding the the free trial period has been extended until December 31. I know there are many of you who have ordered yours and are waiting to try it out.

Since I am only aware of myself and Jim Brown, I will report on our observations. I have now had my unit over three months and Jim Brown has had his for over three weeks. While we both have no intention of returning ours, we both have mixed feelings on the unit.

First I will report on some of the negative parts. I believe the main negative feeling is the battery life. It is very frustrating in not being able to use rechargeable due to the very short life. (Approximately 4 hours). Now you have to carry with you two different types of batteries. You need the double A batteries for the processor and the triple A for the BEAMformer. They never go dead at the same time.

The second negative I have is the hum I get, especially on channel 1. Jim does not seem to get that same hum. Cochlear sent me their clinical trial unit and I do not get the hum with that unit. But, overall, I prefer the sound on the new unit over the clinical trial unit.

Damp, cold weather seems to have a larger impact on the BEAMformer than it does on the processor. I notice a definite sound change in damp, cool weather. Jim states he also notices it.

Now for the positive parts.I never use my processor without the BEAMformer. One day I disconnected just to see how it sounded with just the processor alone. Now that I am used to the sound with the BEAMformer, I find it hard to listen to just the sounds of the processor. For me, it is like getting a completely different map. I like channel two and the duel mikes. I love the part of getting the sound from both sides. Just the duel mikes make the BEAMformer of value to me. I have it on channel two 95 percent of the day.

I have found, when riding in a car, I can hear and understand some on the radio with channel three. Without the BEAMformer, the road noise made it impossible for me to understand anything.

Following are some of Jim's comments: "The mall experience is my first positive experience with the unit. Sure, the noise suppression works in other environments but so did the noise suppression on the main unit.

"This afternoon was the first time I have removed the BEAMformer from the main unit since I got it. I normally keep the BEAMformer on channel one all the time I am at home because there is little need for noise suppression and there is less battery drain on channel one.

"I do find the push buttons and channel 3 convenient for driving. I am always forgetting to turn it back up when I go into a store. The push buttons are easier and faster than trying to find the proper wheel and counting the clicks or going deaf momentarily during a conversation with the test buzz.

"I also congratulate the design engineers on the battery case design. The lack of a loose battery door while changing batteries is very convenient. I have had two instances of jarring the batteries loose though. Maybe that was because I was using the minutely shorter Rayovac Renewable?

"The three main disadvantages are the price, the bulky weight and the battery life. Using the combined unit in a shirt pocket was too uncomfortable. The shirt was always tugging at the other side of my neck, etc.. I long ago decided it was too dangerous for me to wear the processor on the belt, too many knocks and bumps. That is the reason I like the almost under-arm position. So I have now rigged up the elastic belt "shoulder holster" or half bra arrangement. It stretches to conform, can be moved into shirt front for access and is protected but still mostly out of the way. It also gives me plenty of wire slack for head movement. I run both wires under the left arm." Thanks Jim.

I like having my processor and BEAMformer in my front pocket. I do not feel any tugging on the neck.

While the BEAMformer is not perfect, to me it is very beneficial. Right now my unit is back at Cochlear Corporation being reprogrammed. I will report further in the next newsletter. I hope by then several of you will have had your units and will also report to me on your likes and dislikes.

By the next newsletter I would assume some of you will be getting your new Clarion Processors. If any of our readers exchange theirs, please send us a report so we can print it for the rest of our readers.

We receive few letters from our Clarion users. So far we have none from Med-EL users. Please share your story with us. This newsletter is interested in the experiences of all our readers. We want to hear from Clarion, Med-EL, Nucleus 22, and CI24 users. Please share your experiences with us. We are especially interested in the experiences of children and teenagers.

 

Med-El Now Offered in Spokane

by Neil Giddings, MD

Spokane Ear, Nose, and Throat now has the Med-El cochlear implant available for adult patients. The Med-El implant offers a faster stimulation rate than any other cochlear implant available in the United States at this time. It is an FDA investigational device for adults. The patients who would qualify for this device are severely hearing-impaired adults, similar to those who would benefit from he Clarion or Nucleus device. Advantages of the Med-El device include the faster stimulation rate and an electrode that reportedly is easier to insert deeper into the cochlea than other electrode arrays that are currently available. This may lead to more accurate pitch perception by patients with cochlear implants. Another benefit of the Med-El implant is that patients who obtain the Med-El implant at this point, will be provided with a behind -the-ear processor at no charge to the patient when this becomes available. This is expected to be available within the next 12 to 18 months.

Spokane Ear, Nose, and Throat is the only implant center in the Northwest which has the availability of the Med-El implant at this point. We continue to offer Nucleus, Clarion, and now Med-El implants, and believe that patients should have the widest range in choice in implants available for their hearing difficulties.

We recently had a cochlear implant picnic. Approximately 50 implant patients attended the picnic as well as their families. It was a wonderful event to have all these implant patients together and their families, and have them experience an opportunity for them to meet other patients and their families who are also benefiting from cochlear implantation.

The patients with implants ranged from 2 years to 80 years of age. We look forward to doing this on an annual basis because it was such an enjoyable experience for everybody involved. 

 

Virginia Mason Soon to Offer Med-EL

by Suzanne Quigley, Ph.D.

The Cochlear Implant Team at Virginia Mason Medical Center (VMMC) has been selected as a site for inclusion in the national clinical trial for the MED-EL Cochlear Implant System. Participation in the MED-EL clinical trial reinforces the VMMC Implant Team's commitment to providing patients with a full range of implant options.

The MED-EL system is a multi-channel implant which uses high speed processing strategies. It has been widely used in Europe with very good results. The MED-EL Corporation is now seeking FDA approval for use in the USA. Dr. Douglas Backous, Medical Director of the VMMC implant team, was one of the first surgeons in the USA to implant an MED EL device.

 

University of Utah Now Offers Clarion

by Marsha Simons-McCandless, M.A. CCC-A

Our center has implanted 4 Nucleus 24 adults, all of whom are doing extremely well. WE have two sisters, one teacher, and Catherine Clardy, who you featured in your last newsletter. Of note is that Catherine could use the telephone the first week of implant use and after the first stimulation, could communicate with her husband without any note writing. We also have 4 children with the Nucleus 24, (Two in Idaho and two in Utah.).

We are beginning to implant the Clarion device as well - the Gourley family was the first one. We'll let you know how that comes along. Thanks for all your do.

[Editor's note: We are always interested in updates from the implant centers that we can pass on to our readers. It is by working tougher that we can improve the lives of those with a hearing loss.

 

"Tuned-In" To My Clarion

by Dale Becker, West Richland

Working in the yard last week, I heard a strange "Ca,ca,ca,ca,ca,ca," (e.g. a long cackle). I looked up and saw that my Labrador dog had flushed two cock pheasants from the sagebrush near the border of our property. This was the first time I had heard cock pheasants cackle in over 50 years. And I have bagged quite a few of them during this span. So environmental sounds are coming in marvelously.

My Clarion was implanted at Virginia Mason Hospital, Seattle in November ‘96. After six months of use, I recently underwent my fourth programming session. My audiologist started with tests in a soundless booth to learn how much I now understand of human speech while wearing my Clarion -- a) single words with lip-reading (100% recognition), b) single words without lip-reading (almost 100% ), and c) sentences without lip-reading (poor). While sentences recognition without lip-reading remained poor, I could determine word spacing and estimate the number of words in each sentence.

Based on these results, my audiologist said I "was making progress." A couple of months ago I could understand almost no words without lip-reading. Now I can. I did get my hopes "crushed" a little. My goal is to understand sentences well without lip-reading. My audiologist said that very few cochlear implantees become proficient at this. She added that almost all implantees require some lip-reading to understand what is being said. So maybe my expectations are a little high. But I will keep working on it!

Two of my initial problems have been resolved. First, all swelling has gone down at the implant site and my headpiece magnet (a large one) attaches well. Second, the life of each battery pack has increased during program adjustments from about 6-hr

to over 9-hr. This means that I must change battery packs only once each day, sometime during late-afternoon. Battery depletion is fairly easy to anticipate and plan for.

Noisy situations such as restaurants, for me, is just a minor problem.

With my speech processor at "normal" setting, restaurants can be very noisy. All I need to do is lower the sensitivity control. This cuts back-ground noise greatly, while I can understand voices from my table fairly easily - with aid of lip-reading. My audiologist suggests that I use the small microphone attachment supplied with the Clarion in such situations. So I will try the microphone again, although I do not feel using one is necessary. Frankly, a microphone is inconvenient to carry and use. When you need it, you usually don't have it.

One unexpected problem comes from my spouse. She likes to add to a conversation when, to all indications, it has ended. Unfortunately, her remarks usually occur when I am leaving or have left the room. Thus, I am compelled to return in order to understand what she says. This can become very annoying. Reminds me of a puppet on a string. . With an implant, I can no longer ignore her. We need to work out an agreement

Anyway, I now have two new "programs" installed in my speech processor to experiment with, as well as a third program to use in noisy situations. Testing-testing-testing-testing! Oh well! Life is little more than a series of tests anyway. 

 

Readers Have Their Say

Enjoying CI 24

by Dorothy Olsen, Tacoma, WA

This past weekend [September 8] has been a milestone for me. I exhibited at the WIRF Tacoma Dome Antique Show and so many of the people there were those that I had known for 20 years or more of doing shows and having a shop in Lakewood.

When I told them I could hear their voice, their reaction amazed me. More than one had tears in their eyes. Many of them tested me with a statement to see if I got it. Several repeated over and over, "It's a miracle". Many were not aware of the cochlear implant at all. It was an emotional time for me because I didn't realize how much many of them cared.

Lip-reading was far easier and I didn't get so tired. There were still few I could not communicate with...all men. There is something about their voice that is harder to hear. It made this week a turning point for me. Before this weekend, I would not have had the implant if I had it do do over. Now I am beginning to enjoy it and when I turn it off, I miss it.

I had a funny experience a few days ago. I was working in my office and heard this strange noise that kept repeating itself. I looked all over the room and there was nothing. Finally I looked out the window and there was a bluejay all pugged up, taking a bath in the fountain in our entry patio and I could read his "lips" while he was chirping!!!

I was also given the phone adapter recently and when I first called Julie, she knew nothing about it. I could hear the busy signal, the phone ringing, and when she picked it up... this for the first time in well over 30 years. I said, "this is mom and you answer me with either "yes yes" or "no". I explained about the adapter. Then I said, "shall we go to the TDD?" Because I can still not understand the voice, although I can tell when it is a voice. She answered, "yes yes" and so empathetically that we both giggled like a couple of kids. It is so wonderful to know I can now make an emergency phone call where I really couldn't before.

I am looking forward to the future with this. I feel it can only get better as I learn to become accustomed to this new sound after so many many years of total silence.

The encouragement of Dr. Sue and Kevin, as well as your newsletter, with the optimistic approach most have toward this, has been wonderful. It kept me from getting discouraged at the worst times.

 

Rebuttal to Mary Harris Letter

by Rob Roth, Seattle

I read the article by Mary Harris in the Summer 1997 issue. She mentioned the KING 5 news report on cochlear implants and was shocked that "the spokesman for the deaf say that when you tell a child he needs an implant, you are telling that child, he or she is not good enough. To me that is stupid." It is obvious from the article that Ms. Harris loves her grandson Andy, and wants nothing but the best for him. That is as it should be.

I was the "spokesman" that Ms. Harris referred to. To call what I said "stupid" is something else. Ms. Harris should respect my opinion, just as I respect hers. I am not a so called "deaf militant." But I do have opinions. These opinions are borne out of a lifetime of experience. I speak for myself, however, I do know that many other people, born deaf or deafened in childhood, including not a few implantees, feel the same way I do. It is not my intention to start a debate, just to present one viewpoint as an adult deaf person.

It is important to remember that the hearing aids were viewed by parents in the ‘50s the same way the implants are viewed today. Growing up, I went to many speech therapists, hearing aid dealers, and audiologists. I went to what are now called mainstreamed programs. Young implantees have similar experiences today.

Growing up, I was constantly barraged with information, both subtle and overt, that being deaf was something "bad", or that my speech wasn't good enough, that I couldn't do something because I was deaf, etc.. These messages came from parents, teachers, neighbors, friends, and even strangers. Some were well-meaning, intending to look out for my welfare. Others, said what they said out of ignorance. In the fifth grade, one teacher even said to me that if I was bad, I would go back to the deaf class. From that point on, my impressionable mind equated deafness with badness. To be good was to be hearing, but even then realized the conundrum that I could never be hearing. To a young child, it is devastating to constantly be reminded that they need speech lessons instead of playing outside with their friends, or to have their speech corrected because of a missing "rr" or "sss" instead of their important message being heard by his/her parents. I never once felt "normal" as a child. I never felt "good enough." I always felt inferior and inadequate. Years of therapy allows me to feel happier and accepting of myself today.  

It may be an issue of how a deaf child is parented, whether or not they are implanted. But, the statement I made was and is not "stupid." It is important that a child be loved for who are are, and that the child always receive positive, affirming messages. 

 

Thanks for Newsletter

Enjoys Clarion

Three Little Pigs

 

Hot Wire +15

by Jim Brown, Sedro Woolley, WA

Fifteen months after my cochlear implant hot wiring (start up) I managed to get in for my annual tune-up and evaluation. I was disappointed in my comprehension score. I thought I was doing at least 80%. But the tested 60% is far better that the 4% before the implant and the test was immediately after considerable revisions to my map. I am getting used to not looking at a person to see them and evidently able to do a bit of speech reading again.

A year ago I experienced severe vertigo while bicycling in Denmark five months after implant. It subsided over a period of several weeks and I have had no major recurrences since. I now suspect severe hay fever and constant wind noise was the cause. During the recovery I started having facial flinches though. 

When they said the C level is the MAXIMUM COMFORT LEVEL, I took it to heart and set my initial C levels very high. By gradually decreasing the C levels and turning off 3 to 5 electrodes, we have managed to control the facial flinching. My last two maps have used bipolar +2 for most of the electrodes but +5 for two to by-pass the three electrodes that have been turned off. It seems to work quite well.

By lowering my C levels, I am also getting better battery life and was able to reuse a sweat contaminated cord again. At the higher C levels the cord would short out after a few minutes of use. Even after washing and thoroughly drying it several times.

Meir Garst, Puyallup, wrote in the Winter/Spring '97 CICI "CONTACT" that she has problems being "tethered". I too cringe when the ear hook is yanked from my ear. I wear a minimum of clothing around my secluded Naturalist home site and pockets and belts are a problem. I found a pair of tan elastic clip-on suspenders, separated the two halves and removed the clips from one end. I use these as chest belts to carry the nylon bag that came with he CI. I run the longest cord behind my shoulder, clip it to the belt and then under my arm to the processor in front. The second shortened elastic belt and bag I use as a head band with a plastic baggy around the processor on occasion when I have a guest for hot tubing.

 

Enjoys Spectra 22

Loves Implant 2 1/2 years later

Love Implant

Also Enjoys Implant

 

Sonic Cleaner at Dentist

by Don Albers, Olympia, WA

I had a tooth repaired at my dentist this morning and a sonic cleaner was used in the next room and I experienced a very sharp inner ear pain for about 5 minutes

I would like to advise all implantees to turn off their SP's when anywhere in a dentist office when a sonic cleaner is in use. I had just been given a large shot of Novocain. The dental assistant was in the process of placing a rubber dam in my mouth and I heard a high frequency noise and a few second later the very sharp painful inter ear pain.

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