The official newsletter for the Pacific Northwest Cochlear Implant Club.
Note: this newsletter has been edited in spots to reduce downloading time. Sections cut are indicated in italics. To get the entire issue, click on the Subscription link just below.
Volume 7 Issue 1
Previous Issue | Next Issue | Back
to Newsletters | Subcription
and Email Information
Since over 90 percent of our Implant readers have the Nucleus 22, I have chosen this as our lead article. I assume you have received your mailing from Cochlear Corporation describing what it is and how it works. Cochlear Corporation is allowing us a 30 day money back guarantee so I decided to give it a try.
Remember when the Spectra first came out? Many of us tried it, and our first impression was not good. But the longer we used it the better we liked it. Today I doubt any of us would want to go back to the MSP. Also remember how we shared our impressions with each other. I hope you do the same with the BEAMformer. If you do try it, I suggest you not make your decision until you have used it at least three weeks. Then share those thoughts with us and I will publish them in the winter newsletter. I will do the same for the new Clarion processor due out about the first of the year. See article on Clarion Processor on Page 6.
One of the things that attracted me to the BEAMformer was the duel microphon. I hate the extra cords, but getting sound from both sides of my head is something I have dreamed about for a long time.
Both the processor and the BEAMformer have volume control. This is going to take a lot of practice to find the correct set-up for you. There are four different programs so you have to match the correct channel with the correct volume. Just after I received my unit I took a trip to Alaska. Right after we took off, the Pilot started talking. At first all I heard was a loud bunch of noise. He talked for a long time, so it gave me time to play around with the different programs and volume. When I placed it on channel 3, I turned the volume of my processor down to low two. I was amazed at how well I understood.
He was telling us where we were and what to look for on our trip. He also gave the temperature in Anchorage and said we would arrive 15 minutes early. I have never understood so well on an airplane. So when they started talking on the way home, I was prepared for them. I did not understand quite as well but still understood over 75 percent of what the person was saying.
Some of the negative things are that it is bulky. You get a
double pouch. The processor fits in one part and the BEAMformer
in the other. It also takes two triple A batteries. So now you
have two sets of batteries to worry about. When the BEAMformer
batteries go out, they talk to you. They tell you "one"
and it puts you back to channel one. The only way you know which
channel you are on is to listen to the BEAMformer. I have found
the batteries last about one day.
If you are now doing well in noisy places, I think you are going to find the BEAMformer even more beneficial. I have had mine two weeks and am still trying to adjust. I have found channel three of the most benefit. We were traveling in a noisy RV and, even with the window part way down, I could understand conversation. Not everyone is going to like it. I suggest that if you do purchase it, that you give it a minimum of three weeks before making your decision. Then be certain to write and I will publish your opinion in the winter newsletter.
Cochlear Implant Get-Together Sunday September 21
From Coma to Nucleus 24
by Ernest Asmussen, Renton, WA
I am a recent implantee, having received my implant on April 25 at the University of Washington Medical Center. The doctor who did the implant is Dr. George Gates. My implant is the new CI24 which is being tested for FDA approval for general use.
I was referred to Dr. Gates by Dr. Sue Sanborn, who runs the U of W Speech and Hearing Center. I was seeing her for instructions in speech reading and she provided me with information regarding implants.
I received my processor and had the first mapping done by Dr. Sanborn on June 12. Even though I had high hopes for use of the implant in returning to the hearing world, Dr. Sanborn had taken the approach of caution and had provided me with a lot of information that discouraged excessive optimism. This approach was quite effective in that I was beginning to believe that it would be months before I understood anything with my implant and I also doubted how well I would ever understand anything. To all of those present, my wife, Dr. Sanborn and myself, it was with surprise and joy that when the mapping was completed and I was "turned on" for the first time, I understood everything very well. IT was actually quite funny because Dr. Sanborn was apparently prepared for me to not really understand anything and was mostly concerned that the volume level of the mapping was comfortable. When she turned me on she asked me in a manner that it was obvious she assumed that I would have to speech read her, if the sound level was comfortable. When I said yes it was and that I could completely understand everything she said, she almost fell down because of her surprise at that statement.
Since then I have adjusted the sound levels, I guess what everyone calls new mappings, four times. I have also received a noise reduction mapping which I use in crowds or noisy situations and a map to use on the telephone. Even though I could understand Dr. Sanborn and my wife quite well from the beginning, it sounded like they were breathing helium, high pitched and squeaky. Also, I had varying success in understanding other people right away.
My children were much more difficult to understand, probably due to the higher pitch of their voices and less well developed enunciation of words. However, as time has gone on, my understanding of others has improved considerably and their voice tones are much more normal and natural now.
Before I go on about how things are I want to fill in the blanks of how I came to be in need of an implant. As of last summer I was a "normal" hearing person who was happy, healthy and had a wonderful family that included my wife who was pregnant, an 8 year old son, and 5 year old daughter. Then during the middle of September I contracted some type of Staph infection for which I was hospitalized in the intensive care unit. Within a couple of days of going into the hospital I went into a coma. The doctors tried several antibiotics to combat the infection but none seemed to work very well and my condition deteriorated. I was being fed intravenously and my kidneys had failed so I was on dialysis. On about the third or fourth day in the hospital I was given a shot of Gentimicin, a very powerful antibiotic, which seemed to turn the tide. I started to regain some level of consciousness and in a couple of days I was given another shot of Gentimicin. When I first started to wake up from the coma I could still hear but within a few days my hearing was gone, apparently due to the Gentimicin. At that point I had lost about 40 pounds and was so weak I couldn't sit up in bed, let alone feed myself, stand or walk. After two weeks in the hospital I began a rehabilitation program to learn to walk again.
As I was learning to walk, it was discovered that not only had I lost my hearing but the nerve endings in my inner ear that control balance were also destroyed. Through much encouragement from my wife and family and great patience and care from the staff at the hospital, I finally was able to walk well enough to leave the hospital after a one month stay.
However, that was not the end of my challenges, since I didn't seem to be getting better after I went home. On the day before Thanksgiving I went to see a Cardiologist who informed me that the infection I had also severely damaged a valve in my heart, which required immediate open heart surgery. That was done in early December after which I started to improve in my overall health.
To this point I had struggled to communicate with others, learning to speech read somewhat with the patience and encouragement of my wife. However, I felt very isolated and frustrated since my mind worked fine, I just had trouble communicating with others. I had a handful of friends and family who went way above and beyond the call of duty to help me and interact with me while others found it more comfortable to avoid trying to communicate with me. It was while I was in this situation that I began seeking help in speech reading from Dr. Sanborn. She worked with me in learning speech reading and because I had an intense desire to live and interact in the hearing world, I progressed very well under the circumstances of having no hearing at all. It was during this time that implants were discussed and I became very excited about the possibility of hearing again. I had visions of being able to communicate normally, listening to music, and going to movies again. As I said before, many of those hopes were successfully dashed in preparing me to be realistic in my expectations of the outcome of my implant. As a result of the lowered expectations, some of the results have far exceeded my expectations while others have not.
One of the greatest rewards is that I can converse with my wife and family quite well which has broken much of the isolation that I was feeling. Also, even though I could function in public such as buying something at the store or ordering at a restaurant, it is much easier to do that now and all of the fears I had of doing that are gone now. Also, it is easier to watch television because I don't have to read everything in the captioning. I still use captioning since it is more difficult to understand the sound from t.v. than just talking to someone, but I can relax and enjoy what ever is on easier now than before I had my implant. I also can use a voice telephone with some success. It is harder to understand someone on the phone than in person and the quality of their voice is different. I have to ask people to repeat some things, especially when they change subjects on me. However, even with the challenges of using a voice phone, I very much prefer it to using a TTY.
Probably my greatest disappointment is not being able to really appreciate music yet or listen to the radio. Those things are still a ways off for my understanding. I don't have much understanding in variety of pitch so music all sounds about the same. I can understand the beat but that's about it. I'm hoping that will improve, but I don't know if it will.I know from time to time that I lament the lose of my hearing and wish it hadn't happened, but I believe that all things work together for the good and I am so thankful to have this implant. It's not a real ear, but it is vastly better than no hearing. Like all "replacement parts" that man has developed for the human body, it's an imitation of the real thing. It can't replace the real thing, but it sure beats not having anything.
My life has been tremendously improved by this amazing and wonderful technology and my family and I am very thankful to have it available. We are grateful for all the people like you who have devoted their time and resources to helping those who have lost some of their physical senses and abilities. We didn't fully understand the challengers faced by people who have considerable loss of ability until I was faced with it. However we have found many helping hands among friends and those we had never met. We are so thankful to all of you. You have given us much hope and much to be thankful for.
My CI 24
by Jacqui Metzger, Seattle, WA
It began last year, springtime... I had terrible tinnitus, knock- me-out-of-my chair-noises and with these sounds came the realization that the sounds I wanted to hear was becoming fainter. I saw several doctors, had a battery of tests, and ultimately had to face the reality that my hearing was getting much worse. I was in the before unimaginable, and now, very new position of thinking about a cochlear implant.
I had the good fortune to know people who gave me good advice. I was able to talk with a lot of folks about their implant experiences, pros and cons. I made the decision, with a lot of support from family and friends, to go for the implant, and work with the Implant Team at University Hospital. I was a candidate for the new Nucleus 24, and was told I'd be the first to be implanted here in the NW with this new device. The benefits in favor of the new 24 seemed to outweigh the jitters I felt being a guinea pig and research subject and surgery was done in early February '97. What a team. Dr. Gates, Dr. Rees, Dr. Sanborn, the hospital staff, the Cochlear crew, the research folks all were respectful, skilled, helpful... Recovery was relatively easy. I slept a lot the first week, the second week I was up and about and felt pretty good. I went back to work the third week and with my FM system on the "other" aided ear I was able to manage.
Hookup day was eventful. We sat in Dr. Sanborn's office, I was hooked up to the computer and there was blinking and beeping, and suddenly I "heard" a sound in my ear. I was puzzled, then the light went on...it was a voice! My brain wasn't sure what to make of this weird sensory experience since it hadn't heard much for a year and not a lot more for many years prior. There were tears, hugs, and then the work began. Programming all the channels, again and again over the next few weeks and months. Much patience was required, by all involved. At first all I heard were beeps and squeals and very unpleasant sounds. Over time the splashy, squishy, "ducky" staccato noises began to have more voice-like qualities to them. I listened to NPR (National Public Radio) during my daily commute; I was understanding numbers. Then one day I understood the weather forecast. "Cloudy and rain tomorrow" had never sounded so good!
Since I was using my hearing aid on the other ear, CI and hearing aid were learning to be a team. The hearing aid gave me the sound quality I wasn't getting from the CI.
This experience has been an emotional rollercoaster - from
realizing my hearing was getting worse, to dealing with the
myriad implications of the implant, to feelings of impending
surgery...and then after the surgery and recovery and attention
from friends and feeling so good... the squeaks and beeps were a
let-down at times, with feelings of despair and great sadness;
being in touch with the old feelings of losing hearing and the
hope I had that this implant would change things.
There was hopefulness too, the blinker in the car was a new sound, lovely in it's mechanical blinks. I was newly distracted by sounds; while sitting at my desk "What's that?" It was my clock ticking. It's now four and a half months since hookup. NPR becomes more understandable, people who were hard to understand are more understandable and conversations are easier. I use the hearing aid less and the CI more; I still depend on my FM system for conversations but when the speech processor battery dies it's much harder to follow so I know how much the CI is adding to ease of interaction.
I'm learning to listen to sounds and make sense of them with my ear which is a very different process than taking information through my eyes. I'm doing both now and it feels like I'm rubbing my belly and patting my head at the same time. I'm getting better.
As a friend of mine said, who is also a CI recipient; "The experience of hearing that is getting progressively better is a miracle for anyone who has experienced progressive hearing loss." She's right.
4 Yr. Old With Residue Hearing Receives
by Michelle Frost, Portland, OR
We were so shocked to hear of you having a heart attack, and pray that you are feeling better.
Lindsay had her surgery for the Nucleus 22 on May 27th at Oregon Health Science University by Dr. Alexander Schleuning and was turned on the 30th of June at the Tucker Maxon Oral School by Audiologist Arlie Adam.
This has been a very trying couple of months that really took a toll on our family. We have three children - Lindsay (4), Cameron (19 mos.), and Mallory (6 mos.). I am happy to say that Lindsay is doing terrific. She is a remarkable little girl. We are very proud of her. You mentioned to me that the decision is never easy and you are so right. It is still hard as we are adjusting to all the newness. I feel like the decision to implant Lindsay was so difficult because she had some hearing and was using it well. Lindsay has a bilateral profound hearing loss and with hearing aids had thresholds from 35-90 in the right ear and 35-50 in the left. She was speaking in 3-4 words sentences with fair intelligibility and was making remarkable progress. We were approached with the idea of an implant just because of her doing so well with such a loss. The staff at Tucker Maxon all felt as though Lindsay would get more high frequency hearing which would help with her overall voice quality and also better distance hearing. Over the past 1-1 1/2 years, several surgeons felt that Lindsay had too much hearing, but as time passed we were leaning more towards the implant. After Lindsay's next evaluation (about a year later), all were in agreement that kids with some hearing seem to do great with the implant and Lindsay was now a candidate. Now it was up to us.
Just having my 3rd baby in 3 1/2 years, I was not prepared for such an emotional rollercoaster. Do we stay safe and keep her aided, knowing she'll do just fine, and certainly be an oral adult, or give her the implant and pray that it will be successful in giving her more? After speaking with everyone we could, we finally realized we were the only ones that could decide, and we remembered our goal to give Lindsay every opportunity in this life which practically meant giving her the ability to hear and speak to her maximum potential. Knowing that the implant might help her and even make it easier to communicate, we knew we had to do it.
Taking Lindsay the oral route was the biggest decision we had made. Now we needed to stick to that commitment and not hold back out of fear or selfishness on our part.
Now that this is behind us, we are happy to be slowly getting back to normal. We make choices for our kids everyday, but this decision seemed so life changing and I so badly wanted her to be happy and to know that we had her best interest at heart.
Lindsay, as I mentioned before, is remarkable. She is so proud of her implant that she talks about it, shows other people, and has taken real ownership over it. We will be testing her more and watching her closely, but I wanted to let you know that with her implant on she had speech awareness at 30 dB. I wanted to thank you and the staff and our friends at Tucker Maxon Oral school for your support and please feel free to give my address and phone number to anyone struggling with the decision to implant or the newness of the transition from aids to implant.
I Am Feeling Spiffy, Suzanne
by Suzanne M. Quigley, Ph.D., Director of Audiology, Virginia Mason Medical Center, in cooperation with Clarisa Darcy, Clarion Recipient
I first met Clarisa on April 17,1997, but I already knew much about her. Clarisa, 20 years old, had normal hearing and eyesight all her life until a tragic gunshot wound to the head in the summer of 1995 left her blind and hearing impaired. She was quickly fit with appropriate hearing aids and enrolled in the Washington State School for the Blind in Vancouver, Washington. She began to learn Braille and was able to communicate with the help of her hearing aids until her hearing loss worsened dramatically in the fall of 1996, leaving her with practically no benefit from her hearing aids or FM system. She began to learn how to communicate with the use of sign language, signed on her hand and Braille... she made rapid and impressive progress. Her care providers at the School for the Blind arranged for her to attend the Helen Keller Institute in New York. She would begin there sometime during the Summer of 1997. A call in early 1997, from Nancy Bowen, Clarisa's audiologist at the School for the Blind initiated the start of a successful journey back into the hearing world for Clarisa.
Our evaluations were tedious and draining for Clarisa even with the expert assistance of her interpreter, Christina. All instructions for the tests and the explanations about implants and the process involved in using one were signed for Clarisa. Words were spelled onto Clarisa's hand; Christina held both of Clarisa's hands and made signs in the air, moving Clarisa's hands and arms with her. At the conclusion of our consultation, it was decided that she would be a good candidate for implantation and on May 14, 1997 Clarisa had her operation at Virginia Mason Medical Center by Dr. Langman. End of the year activities at the School for the Blind helped make the weeks to her initial stimulation appointment go quickly. On June 11, her mother and Jean Stolle, Clarisa's speech pathologist, accompanied her to the initial programming and fitting session of her Advanced Bionics, Clarion device. Jean interpreted our conversation that day; helping Clarisa understand what would be involved with programming the device, how she was to let me know how each electrode sounded, what she could expect as we neared the close of the first day of programming.
I then made her first program and turned it on, ready to have Jean interpret my words.... I said, "Hello, Clarisa. Can you hear me? This is Suzanne speaking." Clarisa laughed! She was hearing my voice and the specific words!
Her mother spoke, Jean spoke, Clarisa spoke... Clarisa could understand the majority of what was said to her... even if we did sound like we were under water. She laughed a lot that day and continues to smile more than she did just a few months ago. She returned the next day to report that she called her dad in Spokane and talked to him on the phone, understanding much of what he said.
I saw Clarisa for subsequent intense programming sessions for the next few weeks, scurrying to get her a set of programs that would serve her well as she began her evaluation and studies at the Helen Keller Institute.
On the final day of programming, I met Clarisa in the waiting room. She looked radiant. I commented, "Clarisa, you look spiffy today," immediately regretting using such a difficult word for a person with hearing loss to hear. My heart welled when her response was immediate and clear, "I am feeling spiffy, Suzanne!"
Teenager and Nucleus 22
by Bridget McCarthy, Olympia
Imagine talking to someone in a foreign language and knowing the words. Problem is, you can't lip-read other people in a foreign language. Right now I am in that situation in Germany. Some of my relatives don't speak English. So far I'm doing relatively well, thanks to my new cochlear implant.
I was implanted on February 19th of this year with a Nucleus 22 by Col. David Schall MD at Madigan Army Medical Center in Tacoma, WA. My first mapping session was on my 18th birthday, April 10th. I first felt a rhythmic vibration that I mistook for my heartbeat. I hated the sound of the implant because it was so loud and harsh. Over time I got used to it as it filled in many "blanks" that my hearing aid did not pick up. Now I wear my implant all day except in very noisy environments.
When I don't wear the implant, German people often ask me to repeat what I said and communication is more difficult. When I wear it, most people understand me very well and I have an easier time understanding the Germans. Some people are even saying that my German is improving.
I will attend a baptism in which I will become a godmother and
I will have to answer some questions the priest will ask me
during the ceremony. I'm a bit nervous but I would be a lot more
nervous if I didn't have the implant.
Partly, thanks to the Nucleus 22 implant, I am having a grand time in Germany and the trip will surely leave me with fond memories.
10 Yr. Old Enjoys Clarion
by Debbie Hall, mother of Amanda Maxwell, Kennewick, WA
Amanda was turned on March 20, 1997. We left for awhile to go to lunch and when we walked out of the building she heard the cars on the freeway behind the office and she also heard a helicopter. She was quite excited. We then went to a restaurant Azteca and a man was laughing at the table next to ours and she heard the laugh but did not know what it was. We told her and pointed at the man. Upon leaving she picked up the pay phone and could hear the dial tone. Later that evening, she talked to my husband on the phone, she really couldn't hear what he was saying but could tell when conversation started and ended.
She has heard so many things since she has been hooked up. She can hear the washer and dryer, dishwasher, blinkers in the car, clocks ticking, my husband raking the lawn behind her, the sound of the whale on the computer and she mimics it precisely. Her lip-reading skills have increased significantly. She is hardly using sign, she had been so dependent on it over the last year. She is now picking up parts of conversations in the car from the back seat. We are just astounded.
This morning I asked her a question from one room to the other and she answered correctly. Every day there is something new that she hears. She wears it full time until she goes to bed.
After the first couple of mappings she would come home and take it off. I was feeling bad, and second guessing my altering decision I had made for her. But I think the changes between mappings were a little overwhelming, but the next day she would just put it on and wear it all day. I ask her all of the time how she likes it, and she replies, "Mom, I love it! I hear everything!" I am very happy with my decision and I know she is too.
Another CI24 Implantee
Congratulations New CI 24 implantee
New Processor and Programming Software
for the Advanced Bionics Clarion System
by Suzanne Quigley, Ph.D.,
CCC-A Director of Audiology, Virginia Mason Medical Center
Advanced Bionics has announced that a new product, called the S-Series speech processor, will be available this fall. In conjunction with the release of this product, implant centers will be getting an upgrade of the programming software. This upgrade will enable clinicians to create speech processor programs previously not possible. Most* existing Clarion users will be able to capitalize on these hardware and software upgrades.
Current users of the Clarion 1.2 speech processor do not need to get a new processor in order to take advantage of the programming advances. The audiologist at the implant center will have the capability to create programs with the upgraded software in the existing 1.2 speech processor.
For those wishing to have the latest hardware, the new processor offers some improvements over the existing 1.2 processor. The S-series is lighter and smaller, designed to be more robust, and have longer battery life. Other enhanced features include audible alarms and LED lights to help monitor the function of the system. Patients implanted after June 1 and prior to September 1997 will initially receive the 1.2 processor and an upgrade certificate which makes them eligible for a free upgrade to the S-Series processor at a later date. Implant Centers can provide details on how the exchange procedure will work for each patient.
Patients implanted prior to June 1 have the opportunity to receive a discount on the purchase of the S-Series processor. The amount depends on the length of Clarion use, specified as follows:
Price of the S-Series processor: $5,950.00
Implanted: Discount: Upgrade Cost:
after 6/1/97 $5900 --------------
1/1/97-5/30/97 $4000 $1,950
7/1/97-12/31/96 $3,500 $2,450
before 6/30/96 $3,000 $2,950
*Patients with an internal device that is version 1.2 are eligible.
Virginia Mason Medical Center (VMMC)
Welcomes New Physician to Cochlear Implant Program
by Suzanne M. Quigley, Ph.D., CCC-A
Director of Audiology, VMMC
Article described how Dr. Alan Langman has recently left VMMC to join Allegheny University in Pennsylvania and Dr. Douglas Backous is joining the VMMC Section of Otolaryngology.
*Med-EL Corporation has developed a multi-channel high speed cochlear implant device, widely used in Europe and now undergoing clinical trials in the United States. For more information about this device and other exciting developments for cochlear implant users, come to Virginia Mason on September 21. See announcement on page 1 for more details.
Nucleus 22 Equipment for Sale
One of our members passed away and his friend John McIntyre would like to sell his equipment. John states there are two processors. One is a Spectra 22 processor and the other may be a MSP. It contains two battery chargers with batteries and one accessory kit with one extra telephone adapter. Asking price is $1500. If you are interested, contact John McIntyre, 111 W. 23rd Street, Vancouver, WA 98660. Phone 360-737-8376.
Clarion Implant Receives FDA Approval
Patrice Heck, Marketing Director at Advanced Bionics announces the Clarion Multi-Strategy Cochlear Implant has received approval by the FDA for use in Children. It had been previously approved for use in adults.
To the best of my knowledge it is being offered at the following Northwest Implant centers:
Virginia Mason Medical Center, Seattle
Children's Hospital and Medical Center, Seattle
Spokane Ear Nose & Throat Clinic, Spokane
Suggest you contact your local implant center or Advanced Bionics for additional details.
Newsletter on Internet
Thanks to Gerry Grimm, a fellow implantee, you can locate back issues of this newsletter on the internet. The web site is: http://www.deafweb.org/newsletr.htm#pncic Gerry has a complete web site called DeafWeb Washington. It is: http://www.deafweb.org/
Last issue I published a web site in Italy. I had it wrong. It is: http://www.tsi.it/contrib/audies/home.htm. The implant section is: http://www.tsi.it/contrib/audies/impianti.htm.
Opinions expressed in this newsletter are those of the person
submitting the information and not necessarily those of the
Pacific Northwest Cochlear Implant Club. Mention of goods or
services in this newsletter does not mean endorsement nor should
exclusion suggest disapproval
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.
Previous Issue | Next Issue | Back to Newsletters | Subcription and Email Information
DeafWeb Washington Home
Your comments, additions, corrections, and/or suggestions are
Send email to
Copyright © 1995 - 2003 DeafWeb Washington