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. To get the entire issue, click on the Subscription link just below.
Volume 6 Issue 3
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Cochlear Implant Club International
Sturbridge, Massachusetts June 27-30, 1997
Thinking of getting an implant for yourself or your child? You have an implant, and want to share your experiences with others? Want to learn more about patch cords and assistive devices that can help you to get even more benefit from the implant? Would like to learn if there are any processor upgrades on the horizon?
If you have answered yes to one or more of the above questions, then you may want to attend the CICI upcoming convention. This convention takes place only every other year. Never will you meet so many who have already been implanted. Only those of us who are implanted know what we hear and what we feel. Maybe you have something that bothers you. This is your chance to meet many others and see if you are alone or if someone else has the same problem. I can almost bet you will find someone experiencing a similar situation.
<section cut - for more info, e-mail CICI at: 76207.3114@CompuServe>
There will be many things planned for the children. They include arts and crafts, games outside, field trips, and day care for the youngest attendees. The children's programs have been designed to allow parents time to drop off and pick up their children without interrupting the adult agenda.
To me the most enjoyable part of any convention is seeing old friends and making new ones. Everyone coming will have a common interest. We will either, already have an implant for ourselves or child, or be learning more about them.
CICI Membership Information
[Editor's note: In our last edition we mentioned that Kiril was the fourth person in the United States and the first in the Northwest to receive the new experimental Nucleus CI24. I sent Kiril a series of questions. Following are the questions and his response]
Where did your surgery take place and who was your doctor and audiologist? "Dr. Cohen performed my surgery at the NYU Medical Center and Ms. Betsy Bromberg is my Audiologist."
Date you received your first map and how many maps have you had? "I received my first mapping November 18, 1996 and have had two mappings in total to date."
What did it sound like on the first map? Has the sound now become more normal? "The first mapping sounded like an 8 year old boy in fast forward superimposed on a police squawk box with a lot of feedback. Yes, the sound has become more normal after 4-6 weeks with no feedback."
How has the implant helped you? How long did it take to understand speech? Does it help you in lip reading? Anything else you want to say? "Yes the implant has helped me very much and it took me 4-6 weeks to understand speech. Yes, the implant helps me with lip reading. "The CI24 - differences is not only a computer (?) with four different noise levels, but the receiver placed in my brain is of a more advanced level. Before the operation in October, I was tested for hearing. Heard not one word over course of ten months.
In December, I was tested with sentences and heard 70-75% of the words. "I started using the phone (cellular and regular) and can carry on a limited conversation with close friends who speak slowly and are happy to repeat. "Anyone who is contemplating the CI24 should contact me. I will be happy to help out."
Recap by a Clarion Implantee
by Dale Becker,
W. Richland, WA
In mid-1996, the Clarion was added to the Nucleus 22 as cochlear implant systems offered at the Virginia Mason Medical Center (VM) in Seattle, Washington. This timing coincided with my growing interest in obtaining an implant. I contacted Dr. Suzanne Quigley, Head Audiologist at VM, for the prerequisite counseling, evaluation, and audiological tests. All lights turned green.
At this point, I faced two hard decisions -- Whether to go with the Clarion or the Nucleus, and whether to implant my "good" (HA ear) or the "bad" ear. After much advice, deliberation, and hesitation, I decided the Clarion might be best for me. I also threw caution to the winds and decided to go with the ear accustomed to sound from my HA.. Dr. Alan Langman, implant surgeon at VM, inserted my receiver/stimulator (R/S) and electrode array on Nov. 6.
How did I get to this point? In a nutshell, I acquired measles at the age of three, leaving a moderate hearing loss in both ears. By the time I graduated from high school, doctors said my hearing was declining and would continue to decline throughout my life. This was one of the few accurate predictions ever passed on me. Suffice to say, the young believe few long-range forecasts.
I graduated from college without wearing a hearing aid. But I started using a hearing aid during graduate school and I depended on one through a successful professional career. After retirement, late in the game, I learned for the first time about cochlear implants through involvement with SHHH. At this point, closed-captioned movies and TV, as well as VCO telephone calls, had became necessary aids to life. I could understand face-to-face conversation only with the aid of lip reading and other transitional aids. And, yes, many ugly problems involving communication reared their heads because of my hearing loss. (If you've been there, you'll know what they are.) Fortunately, I was born an optimist. Also, I was well supported by family, as well as a few close friends and professional acquaintances.
Where am I now? No physical discomforts followed implant surgery. This was an unexpected bonus because I expected otherwise. Dr. Quigley introduced me to a Clarion speech processor and programmed it a month later. Three subsequent re-programming sessions followed. Most sounds from the near-environment were initially puzzling and distracting, but are now a delight to hear.
I never realized the extent of noise coming from kitchen appliances, the way my dog pants consistently; or the various sounds shoes make on floors, carpets, gravel, and snow. When making VCO relay calls, I was surprised to hear the sounds of typewriters clicking and phones ringing in the office of the relay operator. The list of pleasant surprises is almost endless. And I found that my speech processor tempered the shrill sound of sirens, so annoying and painful with my hearing aid.
Understanding human speech with my implant, at this point, is another matter. Words sound different and tend to run together. I do well in face-to-face conversations because of some lip-reading ability. But my understanding of group conversations remains less than 100%, and direct telephone conversation remains out of reach. At least for now.
My experience points out the problem faced by most cochlear implantees -- learning to understand human speech well is not an automatic given, but takes time and commitment. Further, rate and ability to understand speech likely varies greatly from one person to another. I still have many goals to shoot for. Understanding human speech without lip reading is one of them. Check with me a year from now.
Happy With Her Nucleus 22
by Elizabeth Paine
I decided after five years of profound deafness, waiting for FDA approval of the Clarion, [Editor's note: The Clarion is now certified for implantation in adults.] that I wold follow my brother, Alden Douglass, in his urging me to apply for a Nucleus 22 Cochlear Implant. That was the summer of 1995. After all the testing and final approvals the surgery was done in October 1995, at the University of California Davis Hospital in Sacramento. The surgeon Dr. Hilary Brodie and the Audiologist, Dave Shaeffer, make a confidence-inspiring team because of their meticulously careful work and patience, for which I want to thank them from the heart.
I could hear and understand speech clearly from the first moment I was "hooked up", December 1st. What a Christmas gift! 1996 flew by faster than any year I can remember so full of new experiences in hearing again; the ocean waves on shore, bird song, bells, quiet conversation with friends, warning sounds like motors and sirens, dogs barking or telephone ringing. What a blessing it was to hear the birth-cry of our daughter's first baby, and the first time for hearing our other two grandchildren speaking and even singing and laughing!
My husband is delighted that my voice is back to its normal tones after years of harsh loudness. We can carry on a conversation in the car and give or take directions and words of caution. That was so frustrating while deaf! There is so much to be grateful for that I feel guilty for complaining that sounds are not "normal", or I can't hear the speakers in church or group-participation meetings, can't use a regular phone, or enjoy music as I used to. I depend on captioning for TV watching. My ability or sensitivity is limited probably because of early nerve damage and waiting so long before stimulation, not for lack of trying every possible programming combination.
A Happy Clarion User
By Shelly Larsen
[Editor note: Shelly had her surgery performed by Dr. Neil Gidding, Spokane Ear, Nose and Throat Clinic.] I would like to sincerely thank you for all your time and effort that you put into your newsletter. They were very helpful for me, giving me an idea of what to expect from my cochlear implant. Reading testimonies of so many other recipients has been encouraging as well.
I received my Clarion implant November 25th, exactly six months after becoming deaf. I am a wife and mother of five, four girls and a son. I am bless with a wonderful loving and supportive family, "thank God" and with good health until March 1996 when I came down with an ear infection, so we thought.
Within a couple of weeks I lost hearing in my right ear and developed balance problems along with the loss. My balance returned well enough to drive in six weeks and we thought the battle was over. Two weeks later my left ear began to hurt and on June 25th I became deaf. In a matter of two months I wasn't able to drive or use the telephone.
This created a difficult impact on my life trying to help my husband raise our family. I had just earned my disability insurance license in March and was starting a career after being a homemaker for eleven and a half years. Further complications arose when my eyes and joints became inflamed and resulted in hospitalization by the first week of July.
After my release we sought professional help from many doctors in Lewiston, Clarkston, Moscow, Spokane and Portland to find a diagnosis. After weeks of continuous steroid use and much frustrations I was finally diagnosed with an autoimmune disease called Cogans Syndrome. There are only 200 documented cases of this disease since 1945 when it was discovered. It is a vascular disease that destroys the lining of blood vessels, usually starting with the auditory vessels then the optical.
Due to medical intervention, I haven't lost any of my sight and now I have been provided with the miracle of hearing again. I can't thank the Lord enough for providing Bill, my husband, with your name, Gordon, and for all the information and encouragement you provided us. I have been hooked up to my new sound processor for less than a week. I would like to thank Dr. Gidding for his skill performing the implant surgery and his office staff for all the paper work involved in getting me approved for the procedure. I'd also like to thank Kami and Erin, my audiologist who hooked me up. It was amazing watching them use the computer to fine tune my three programs. (Yesterday I went to a library and checked out books about computers as the result of my two day journey with them.)
My implant has been successful in so many ways. The first day Kami and Erin processed three programs on my Clarion and I went to lunch with Bill. I was disturbed when I couldn't figure out what I was hearing most of the hour. It seemed so easy in the quiet little office we were working in. When we returned and reported my frustration they reassured me that restaurant situations are usually the most difficult and take the longest to adapt to.
My progress continued so we tried out using the telephone and, to our surprise, I could understand slow speech adding more excitement and success to my hook-up. By the second day I could understand and repeat back 11 of 15 compound words without lip-reading. Bill and I left the office full of great expectations for we know my hearing will only get better.
As for surgery, it went well. I left the hospital the evening of my implant operation. The next morning Bill and I went to Dr. Gidding's office to have the bandages removed and we tested the implant. I heard six of eight tones he tried. This made my six weeks 'til hook-up an even longer wait but we were very thankful knowing the operation was a success.
It has been seven weeks since my implant and my head still has a few tender spots. Other than the first week of recovery the pain has been minimal throughout. This letter is hard to end because hearing again has had such an impact on my life as well as my family and friends lives. I have so much to tell and be thankful about. I just hope my testimony will help others who are considering an implant. I look forward to writing an updating letter in a few months to tell everyone the process I will have gone through adjusting to my Clarion..
Another Clarion Implantee
By Ginny Buckley,
- this letter was shortened to keep file to 30K.
The surgery itself was uneventful. Aftermath of the surgery, aside from the first two days of slight dizziness and some nausea and vomiting, was uneventful. Surgery date was the 6th of November and the stitches were removed on the 21 of November.
At that time the implant was tested by Dr. Langman and Suzanne Quigley. [Audiologist]. All was said to be working fine. I was asked to say if I heard any type of tones at all. That was it until the 4th of December, hook-up day. I met with Suzanne and she told me the first map is always the worst map, and then came back the next day for another map. At that time I was given two maps with each to be used for 3 to 4 days and come back in a week for more maps.
The Clarion can hold three maps so that the process for trying new maps perhaps goes a bit faster than with the Nucleus device. I was given two new maps the following week, based on my daily log reports to Suzanne about the quality of the sounds that I was hearing. This part of the process amazes me in that she is able to take the descriptions of sounds from so many different people and figure out what to do with their maps.
Dale did an excellent job of describing the mapping process with the finger running up the chart for the comfort levels of each tone and then a run through of the sequence of all tones. I was told that all electrodes were in place and functioning. The higher tones were not pleasant to hear for me. I suppose because it has been such a long time since I have heard them. The programs can change the speed and the number of sites that are stimulated and the ascending or descending order in which the sounds are received.
Over the weeks this has changed. The quality of the sounds have ranged from a hallow quality about all the words to Heh heh heh high pitched quality to the words. I have had a bout with tinnitus and sinus congestion that has left me with the same programs for two weeks until my head clears out a bit. This is my head and not the implant that is causing the difficulties.
What was it like the first day? after leaving Suzanne's office I was struck by how quiet it was outside. No traffic noises, I could not discern speech, only the rhythm of the speech. The sound was "blare" only. At home, I tried reading out loud. I needed the spoken words to practice my hearing. Michner's "Poland" was too advanced for my first efforts. The words were too long. I down shifted to "Mother Goose" with the shorter more concise words and hit pay dirt. "One, two, buckle my shoe" were the first words I clearly understood with the implant.
I still need to lip read a good deal of the time. The regular programs are more difficult since people are not always facing the camera when speaking. The canned laughter and the clapping all sound like blares to me. I have found that I have squeaking hinges on my doors, and have been surprised at times upon hearing a new sound and having to discover what is causing that sound. The dog lapping water from her dish, the TV playing in the next room, the dog tapping across the hardwood floors, water dripping in the sink and the computer beeping at times.
Update From Ineraid To Nucleus 22
by June Knudson,
- this letter was shortened to keep file to 30K.
I had a Spectra 22 whereas before I had an Ineraid in June of 85. So it has been quite an experience going through the operation and getting used to this new implant. Before I had my menieres attack in July 95. I believe I was hearing almost as well as I did before I lost my hearing. I believe that I was really quite well adjusted (but you see I had ten years to do so) and resigned to the fact that I would never hear really well in groups or high ceiling building, so I felt pretty confident.
Then when I had my meniers attack it changed everything completely. . It became so I didn't hear much of anything,. Everything was scrambled, unintelligible, and just plain miserable.
So I talked it over with Dr. Parkin at the U. of Utah and he said he could see no reason why I couldn't have this other operation on my right ear. So I went ahead with it.
The operation was a lot harder for me than the first one. Of course, I am 11 years older , so that may make a difference. I don't know if it was the anesthetic or something else, but it was like I had a virus for almost six weeks after. Then I began to recover and have had excellent health since then. I really like how the Spectra attaches onto the head with no plug in device and am getting used to hearing with it. It still isn't perfect but then I don't look for perfection any more. I am really thankful that I can hear all of the things that I do hear. It is becoming really natural sounding to me and especially after I go down and have a session with Marsha McCandless [Audiologist]. She is so great to work with and has helped me so much. I know eventually I will hear much more than I do now although I hear almost everything except some people voices are harder to understand than others, but I'm sure we all have that problem.
University of Utah Is Clinical Site for
Per Marsha Simons-McCandless, Audiologist, the U of Utah will be a clinical trials site for the Nucleus CI24 device. They were expected to do the first clinical trial in January. We have not received word from them or any patient that this has happened.
14 year old receives Nucleus 22 and
would like Pen Pals
Cyndi Matt, 14 year old student is another one of our ever growing numbers who elected to receive the cochlear implant. Her story will appear in the next newsletter. She would like to communicate with other kids age 12 to 18 years of age who have the implant. If you have E-mail you can contact her:: CBEMatt@aol.com. If you do not have E-mail, contact Gordon Nystedt and he will put the two of you in touch with each other.
Congratulations to Those being
It is always exciting news when we hear about another person who has decided to get a cochlear implant. Following are those I am aware of at this time:
Jacqui Metzger, Seattle
Jacqui has elected to take part in the Clinical trials on the Nucleus CI24 program. Jacqui was implanted at the University of Washington on February 7th, Surgery was performed by Dr. George Gates. Her mapping will be done by Sue Sanborn Ph.D. She is the first one to receive the CI24 at the U of W. We will all be awaiting her story in the next newsletter.
Bridget McCarthy, Olympia,WA Bridget, an 18 year old student, has elected to receive the Nucleus 22 and will have it done at Madigan Army Medical Center. Dr. David Schall will perform the surgery. As of press time, no date has been set.
Amanda Maxwell, Kennewick, WA
Amanda Maxwell is the ten year old daughter of Debbie Hull. She just turned 10 on February 8th. Happy Birthday Amanda. (This is being written on her birthday.) She has elected to receive the Clarion Implant and will be implanted February 13th. Surgery will be performed at the Deaconess Hospital in Spokane by Dr. Neil Gidding. Amanda was born deaf and wears bi-cross hearing aids. She has a hearing aid in her left ear and a microphone on her right. Her mom states that she is very oral and uses ASL. She has many friends, both deaf and hard of hearing.
Interested in Assistive Devices
by Myrtle Munk, Logan, UT
Thanks for the newsletter. I was especially interested in reading about assistive devices. We do not have a group in Utah and I haven't been able to attend a CICI Convention since 1991. I'm really out of touch with the latest. There is one help that I learned about when we investigated buying a TTY. I have been deaf for 30 years and my family has always helped me with phoning. I still need to lip-read with my Ineraid. Our children are grown, so I decided perhaps, I should get a TTY. This was how I found out about a VCO (Voice Carry Over).
I have always lived in a hearing world. The people I wanted to phone were (are) hearing people. With a VCO I phone Central Relay, which dials the number I want. Then, I can talk to the other person, who in turn talks to Central Relay. The relay operator types what the other person has said, which appears on a screen on my phone. This has worked very well for me. The cost is under $200. Mine is from Ameriphone. According to Central Relay, mine was the first in the state of Utah. Keep up the good work. I hope to get to the CICI Convention and then we can meet.
If you move and want to continue to receive this newsletter, please be certain to send in an address correction. Thanks.
Loves Her Implant
By Myrtle Mangini,
I have been meaning to write about my implant for a long time now, but have been so busy. Up at 3:00 a.m. working 8 hours in hospital and at 72 get a bit more tired for much else.
I received my implant about 4 years ago from Dr. Langman at Virginia Mason and its become so much a part of me, its like normal hearing again. Each mapping is different and still working on that, but will say this. I got a speaker telephone and at first was hearing great. I even talked to my son on his car phone and at his home in Bellevue. Then I had a new map made and things haven't been quite that good again. I only get to Seattle for that about once a year, since I live in Yakima and my working makes it harder. I need someone to take me as I don't know my way around Seattle. I don't know about your other methods of implants but this one is working for me. I hear some on the TV even though I have caption and do enjoy some of the music.
Without this I can't hear a thing. For all who hesitate or have misgivings about implants - I say do it. Only wish I could have had it years ago. It would have changed my life so much, as it is now.
Best Map Ever
by Sharon Passey,
I had a new map done in my MSP on October 4. It is the best map I have ever had in the 3 1/2 years with the MSP. I have had more maps with the MSP than I ever had the whole 6 1/2 years with the WSP. Up until last month, I wasn't totally convinced that the MSP was that much of an improvement over the WSP. I am now, and the right map made all the difference in the world. It seems like when a map starts to go bad, it kind of sneaks up on you. You can begin to think that things have been this way for some time, so it may not be the map. The general understanding of speech is better. the "S" setting works good now and there is a vast improvement with the telephone.
Enjoys Assistive Device
by Sergio Martinez,
I bought the Sound Wizard, and the Clear Sounds IR listening system at the Portland SHHH Regional Convention.. They were sold together as a package special for $150. I've used the two together to watch several movie videos that weren't captioned. The sound was clearer and easier to understand. I plug the Sound Wizard into my Spectra 22 using the Comtek patch Cord.
by Catharine Talbot-Lawson,
As most of you know, my implant was turned on early January 1996. After a couple of trial mappings, I haven't looked back. In fact, after trying a few other mappings, I'm back to my early one, due to its being the clearest. In November 1995 I went to the IMAX in Vancouver, B.C. and was unable to understand any of the dialogue. I just returned from seeing it again (new program) and was able to understand 99% of the dialogue!!! and with virtually no effort! I continue to hear nearly perfectly on the phone with the attachment and can get by (without background noise) without it. I am much more relaxed in groups (when I remember to put the setting on "S"!). I am enjoying my grandchildren more and I frustrate my poor husband, who is too well trained to having me look at him when he speaks (which I rarely have to do now!) So many new horizons! It was helpful in Portugal this summer, as well both in utilizing my very rudimentary Portuguese and my much more fluent French. Next Greek?!
- this letter was cut to keep file to 30K.
Thanks for Your Support
- this section was cut to keep file to 30K.
Out of Space Once again we are out of space. My apology to those who submitted information and I was unable to publish it. I will put that on the top to be certain it is included in the next newsletter. This issue we devoted a lot of space to the convention. Please don't let this stop any of you from contributing information. I am sure we will have plenty of space in the next issue. Most people tell me the things that interest them the most are: 1. Hearing the delightful stories from those recently implanted. 2. Learning of assistive devices and patch cords that are helping other implantees, especially in churches and other noisy places.
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