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 1
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Five years ago the first Pacific Northwest Cochlear Implant Club Newsletter was published. We have come a long way in the past five years. It was my dream that we would have a newsletter where we could share our experiences. But even more importantly it would be a paper that would benefit those thinking about getting an implant. At first I was not sure the people were interested. But now we are touching lives, not only in the Pacific Northwest, but throughout the nation.
Five years ago I designed a questionnaire and had Cochlear Corporation send it out for me. I only received 27 replies. But I went ahead and published the first newsletter. I sent it those 27 people plus some additional names I had received from Virginia Mason in Seattle and Good Samaritan in Portland. The first newsletter brought in an additional 21 responses. The rest is history. This newsletter is now mailed to 362 people.
In our first newsletter we congratulated five people on receiving the implant. I wrote to four out of the five asking them if they would like to share what it is like five years later. I received two replies. They are from Verna Vandenberg and Maxine Turtle. Their updates will appear in this newsletter.
So many of you have shared your joys as well as your frustrations. I have met so many of you before you had the implant and have seen many of you since. I continue to be overjoyed when I meet you and see what the implant has done for your life. I am not sure who benefits the most, the implantee or the family members. When we lose our ability to communicate, it doesnt only affect us. It affects those who love us and want to be part of our lives. It appears everyone is a winner when someone gets an implant.
My biggest disappointment is those in the medical profession who never tell their patients about the implant. Or, where a patient expresses an interest, the doctor responds that the implant is not for everyone. (Usually meaning, they are for nobody.)
Too many still measure success by the ability to understand words. To me, you measure success by comparing what the person has now with what the person had before. I have met many who still do not understand on the telephone. But those people still experienced a wonderful change in their lives. The implant has made lip reading so much easier. It has made it safe for them to walk down the street as they can now hear cars approaching.
This doesnt mean that we will not experience periods of disappointments. Many of us experienced post surgery problems like balance problems, loss of taste, loss of feeling at the implant site, etc. But, as your doctor will tell you, most of these will go away within thirty to sixty days.
Then comes the day we get our processor. After a couple hours of map making, the Audiologist turns the thing on and it sounds like we joined the Mickey Mouse Club or everyone sounds so muffled. Maybe we cannot understand anything with the first map and we are completely devastated.
But within a short time, we look back at the beginning and laugh about it. Most of us cannot live without our implant for 10 minutes let alone ten days. I hope to continue to publish your joys and your frustrations and letting people know there is hope
SHHH Regional Convention - Portland, OR
October 25. 26. and 27th
Want to meet with other Implantees? Want to try out different assistive devices? Want to learn if you are a candidate for an implant.
If you answer yes to any of these, you might be interested in attending the SHHH Regional Convention.
There will be many dealers and manufactures of assitive devices there. I recommend you bring your patch cord and see what might benefit you. I attended the national SHHH convention and tried out several new products. There is a new device called a Wizard that I tried and used it with a phone. It was very good. But I will try it again in Portland just to be certain.
Ben Havdahl from Montana tried a Cellular phone manufactured by Audex and said it was very clear. Maybe you are not interested in a Cellular phone but would like a wireless one. I understand they also make one of them that works well with the same patch cord.
If you are interested in the convention and would like more information. Send me a letter, E mail, or call me and I will get you the information. Address on page 8.
I have been advised that there will be many implantees from the Bay area attending. I do not know how many exhibits they will be having. If you would like additional information, Please contact Nancy Hammons. You can contact her by E mail DCARACRS@aol.com or phone her: 510-251-6400 V/TTY
by Eve Nickerson, Portland, OR
This letter was shortened to keep the file size to under 30K. Eve describes having the several implants since 1984. She goes on to say:
NOW at last, I am getting what I feel is almost enough input to live with really comfortably. I should hasten to add here that Ive been working, all these years, with only eleven of the 22 electrodes.
"I still use my hearing aid in my unimplanted ear. That ear was supposed to be completely gone, judging by my declining hearing, by 1987. Dr. Black, Bill and out doctor son and I, have always believed that the stimulus of the implant to the hearing center of my brain has kept the other ear functioning, less and less, its true, but still helpful.
Another Five Year Story
By Elma Hendrickson, Custer, S.D.
"I have been on the mailing list for your newsletter since the first one five years ago. With no one within 400 miles of here to visit with about my implant, I nearly haunted my mail box for each issue. As a matter of fact it is still read as soon as it arrives!
"My MSP was 6 months old when I met Gordon Nystedt at the Denver SHHH convention in June 1991 and we exchanged addresses. At that time I had lots of questions and few answers about cochlear implants, but I was hearing better than I had for five years. I had worn hearing aids for 20 years prior to that time. I would try any new ideas to improve my implant usage. By the time I received my Spectra in June 1994, I thought I might be "wasting my money" updating. Then I remembered my doctor saying modern technology would be making many remarkable changes over time. I got the Spectra and there were some frustrating days adapting to its different sounds. Soon I was using the phone with the TL102 adapter for long distance calls and understanding on it as well as hearing people. I had used the phone for local calls quite well with the MSP. Another bonus was hearing sounds with more "depth" and being able to visit better in noisy situations. I was done carrying the lapel mike with me. No, I dont hear 100 percent, but think about it, who does?
"Some of my hearing ability is due to trying new ideas Ive gotten from the Northwest newsletter. Some ideas havent worked for me, but maybe they would for someone else.
"I live 750 miles from my implant center, so I go only when I must, but this Fall I plan to go to have a check-up, the first since getting my Spectra. I want to get lined up for temporal bone donations, as Dr. Luetje has sent papers for me to look over for this.
"I am looking forward to your Regional SHHH conference in October and I plan to attend and renew old friendships and make some new ones.
Implanted Five Years
by Maxine Turtle, Seattle
"I am very happy with my cochlear implant, but I can not get any conversation even, over a loud speaker. I only get conversation on a face to face talking, but it is much better than being stone deaf, which I am. I know a person is talking but I believe the conversation is just too fast for me to pick it up. However, Im still very happy with what I do hear. We cant have everything, and the Lord has been very good to me."
Another Five Year Implantee
by Verna Vandenberg, Tacoma, WA
"Cant believe its been five years since my implant. Like other implantees, I still have big problems in large groups or where there is background noise or music.
"Im not one of the lucky ones that hears music as music and I miss it immeasurably. But other benefits out weight that. One-on-one - almost 100%. When anyone ask me if it is all worth it, I tell them to turn the TV down to barely a sound and try to follow the action. Then imagine that 24 hours a day.
"Five years ago I was still conscious of the "unnatural" sound. Now when the battery goes out (and the pause before the sound come back), I say its music to my ears!"
Symboin Cochlear Implant Removed, Nucleus 22 Inserted
by Wayne Boden, Eugene, OR
"I need to tell you I appreciate very much getting your Cochlear Implant Club Newsletter. I enjoy reading about other implant folks. My wife, LeNora, and I met you at the convention in Atlanta and again at the airport on the way home.
"I had the Symboin Cochlear Implant in 1985 and thought it was just wonderful. It changed my life completely. It put me back into things from which I had withdrawn.
"I hit the pedestal with a heavy object, by accident, and loosened it from my head in August 1995. I was told to wait and see if it tightened up on its own. It didnt so I went back to Salt Lake City, University of Utah Hospital and Dr. Parkin operated with a local and fastened it down again in December 1995. Three weeks later it came loose again. So in January 1996, he operated again and removed the Symboin and implanted a Nucleus 22.
"Marsha McCandless, the clinic director of Audiology, did my mapping. She hooked my processor up to her computer and had me tell her which tones sounded the best, etc. for two hours a day for three days.
"Its better than the old one ever was. I went back May 3rd to do it again, but there was not much to change. Im very happy with it. I dont hardly know what to do with myself as I cant pick the ear wax out from around the pedestal with my finger nail anymore. Or yes, I had the old one exactly ten years." [Editor note: Most of those on our mailing list who have the Symbion Cochlear Implant live in the Utah area. I am sure you will be delighted to hear that it can be removed and replaced with another implant. If anyone else has had this accomplished, we would like to hear from you. We would be interested in knowing if you received the same improved results that Wayne received.]
by Sergio Martinez Seattle, WA
This letter was shortened to keep the file size to under 30K. Sergio, 32, describes losing his hearing and his operation. He goes on to say:
"My turn-on date was July 9. After the first map was made, the speech processor was loaded with it. During the mapping, I was hearing different pitches clearly in that ear, probably for the first time in many years. In spite of that, my first reaction was muted disappointment. I'm glad I gave it a chance first! Everything sounded so muffled. I couldn't hear myself at all it seemed, and my audiologist sounded pretty muffled. What was really strange was that I could clearly hear a pencil dropped on the table, and the clicking of keys on a keyboard. The first evening home, I tried watching some captioned t.v., and surprised myself by being able to match the spoken word with the captioned word.
Sergio cna now understand most, or almost all of small group conversations. He goes on to say:
"I have tried talking on the phone to two or three people. I used the telephone adapter. I can follow the other person most of the time. Previously, the phone was out of the question for the right ear.
More of his letter cut. [Editors note: The next paragraph I received a couple days later.]
"I got back from my Audiology session with Tristan Holmberg. She's been my audiologist all the way with the CI. We tried some open set, everyday sentences today. On an Iowa test, I got 68%. On a CID test, I got 81%. Tristan said that was good for only having the CI on one month. It's a huge improvement over the 0% in that aided ear before the implant. It's nothing short of miraculous! I sure hope I can approach that 98% that Michelle Nashleanas (from b-h) said she was getting with her Clarion! That would be heaven!"
Another New Implantee
by Harold G. Anderson, Poulsbo, WA "I am a recent recipient of the cochlear Implant. [Nucleus 22]. I am still going through the tuning process. "The implant was done at the Veterans Hospital in Seattle by Dr. George Gates from the University of Washington.
"My Audiologist is Nancy Cambron, and I feel that at this state, I am progressing very satisfactory since I have been deaf in both ears for over 26 years. I am hearing better than I had expected at this early time since the implant." [Editors Note; Following is a continuation with a second letter received.]
"Im still in the process of programming and every little bit of news will help me very much.
"As I told you in my last letter, the operation was performed at the VA Hospital in Seattle by Dr. George Gates of the U of W. My Audiologist is Nancy Cambron. I can never thank Nancy or the doctors, or the technicians enough for their help, encouragement, and dedication to their patients and profession.
"I had quite a few talks with Nancy Cambron. In fact, she is the one who convinced me that I should try it and I am very happy that she persisted in encouraging me.
"I was finally hooked up on the 17th of June. I believe was the date. The fact is that when she first spoke to me, I could hear her very clearly. It was a very emotional experience for me. I had my eyes fill with tears for I had been deaf in both ears for over 26 years. "Nancy, the Drs. and people at the clinic were very happy an overwhelmed by the success. I could hear Nancy and one of the Drs. at the clinic very well. It keeps getting better with each new map.
"I could understand some other people clearly, but others I could not. I have had 3-5 maps so far and will get a new one September 23rd and 24th. Then a new one, I expect, in one year.
"The process was interrupted by my sisters death and had to postpone my appointments for a short time. In Minnesota I could hear a good number of people at the funeral. Also, I could hear the cars, birds, squirrels, dogs, and sounds around me. So I could hear and understand a good deal with the first map when it was turned on.
"Nancy and I will talk about telephones on my next visit. I have not tried any as yet.
"You can believe it is becoming a new and beautiful world for me again. I expect great progress in the future, but it may come gradually and take time and a lot of work. I am amazed by the progress so far.
"Again, thanks to Dr. Gates and Nancy and all the staff at the VA and U of W staffs and polite, encouraging, self sacrificing people at both places."
Another New Implantee
by Roy Sousley, Donnally, ID.
"I was implanted by Dr. George Gates and his able assistants on 10 June 1996 at the VA Hospital in Seattle. My Audiologist, Nancy K. Cambron, MS, CCC-A, at the Veterans Medical Center in Seattle has patiently and professionally led me through the many steps of pre-testing, counseling, mapping, and rehabilitation. Other than the after effects of the surgery and anesthesia, I have no complaints. I spent 2 1/2 days in the hospital and felt good when I departed without pain or dizziness. However I must have felt too good the 4th day and evidently was too active. When I awoke on the 5th day, I again had some dizziness and nausea. But by noon, I began to feel better and every day has been better and better. I have not had any problem with facial nerve effects, tinnitus, dizziness or the multitude of other things that I was told I could experience when I signed the consent forms for the operation. My only side effect that still persists (2 months after operations) is some numbness in the area of the implanted receiver.
"At long last, on 23 July, my first mapping was so effective that I was confident that this was the answer to my dreams and hope of good hearing once again. After 5 mappings in two days, I noted improvement each day for the next week. I made my first telephone call, using the Cochlear telephone adapter, without assistance. Although the voice reception was low, the sound was clear and understandable. Ten days after my initial mapping we applied another program and added loudness. My own voice has sounded good to me since the initial mapping and others say I do not talk as loud as I did before the implant. I now find it much easier "to get a word in edgewise" during a meal or at a gathering of several people.
"Following this mapping, I began using a hearing aid on my other ear. In a very short time the implant and the aid became compatible and I felt at ease in further test, both with and without speech reading.
"I know now that this was a wise decision and am so thankful that I was considered a candidate for an implant. Not only do I envision a much better lifestyle, but believe that it will minimize the burden I have been to my family and associates."
by Dorothy Wood, Lakewood, WA "Now for the progress regarding the implant: The first mapping, which was done by Carol at Virginia Mason, was followed with joyful enthusiasm in returning to the world of sound, as I reported before. This was followed by several additional mappings, but it turned out the very first one was the best. All sounds, including my own voice, appear to be as they were many years ago before hearing loss. The birds' songs may not be as a hearing person experiences them, but I don't miss a note. We attended an outdoor concert by the Tacoma Symphony last week and the music was thrilling, though the bass was fine and the woods and strings rather weak to me. Now I know I can again enjoy music even though it is different for me.
"An engineer from the Cochlear Corporation was at V.M. on my recent visit there and he tested the implant and it is functioning at 100%. This was not done during surgery as Madigan Hospital does not have that testing equipment at this time.
"I am very grateful to the numerous people, physicians and nurses who were instrumental in bringing about this blessing for me. I thank you for your encouragement also. At no time was I hesitant about going ahead on it, but did have to be patient at the delays that occurred."
There are several people who have been implanted but either have not received their processor or just received it. We hope we get more detailed reports from them for our next newsletter.
Richard OReilly, Princeton, ID
Richard received the Nucleus 22 at the Spokane Ear, Nose, Throat Clinic. Dr. Neil Gidding performed the surgery.
Richard states he had no post surgery problems. The big day for him will be August 21 when he receives his processor. He will give us more detail for our next newsletter.
Homer E. Kissinger, Richland, WA
Homer received the Nucleus 22 at Swedish Hospital. Surgery was performed by Dr. Charles Mangham of the Seattle Ear Clinic. Homer just received his processor. He stopped by my home and I was delighted with how well he was doing. Homer states that he had few post operative problems. He stated he felt fine until he was asked to sit up. At that time his stomach did a Mt. St. Helens and kept going of the rest of the evening. He states he awoke to a tremendous headache and then things started improving. He had few other problems. We will be awaiting his report for our next newsletter.
Wendy Mills, Spokane, WA
Wendy was operated on by Dr. Neil Gidding of the Spokane Ear, Nose, Throat, Clinic. Wendy received the Clarion Implant.
I have not received a report from Wendy. I hope we have one for our next issue. We would love to get a report from someone who has just received the Clarion to tell us what it is like.
Value of the Audio Input Selector (AIS)
By Paul Sommer, Vancouver, WA
"I have thought many times to write to you, but have been too busy. Today I received the summer 96 issue of the newsletter and have finally made the effort.
"I have been doing outstanding with the Spectra. I have also rediscovered the value of the Audio Input Selector assessory. I have not used this devise for several years as it seemed to be more of a hassle than a help! I had been plugging things like the Walkman, radios, etc. directly into my processor. The problem, I have always received some unwanted noise. A friend recently reminded me of the Audio Input Selector (AIS). I began using it with my Walkman and the noise problem stopped. Last summer, I passed the test to get my license as an Amateur Radio Operator. The AIS has greatly enhanced my ability to understand the radio communications from around the world.
"FINALLY, I have been struggling for 2-3 years to get a cellular phone that works satisfactory for me. I have used them, but they did not work well. I paid out $200 plus dollars to buy a device that was supposed to help work with the phones. It did not work well. I used my electronic skills and have now wired up earphone jacks to two cellular phones. With a short patch cord I can connect the cellular phones to the AIS and my processor and BINGO,..,It works great!
"I recently got a new AIS. I was shocked to find out that my Cochlear Implant Audiologist knew nothing about the AIS. He had worked with many clients and had never given one out. He knows now. My concern, is how many other people out there with the implant are not using the AIS. There are many benefits with that little box and cord. I strongly encourage people to explore their options. I have never had so much fun with different communication devices like the amateur radio and cellular Phone. We can still use these items!
"If people have any questions about this area they can contact me at 360-573-1538."
By Alden Douglass, Federal Way, WA
"I want you to know that I appreciate you sending me the two newsletters. It always interest me to compare other peoples experiences whether they are successes, or frustrations, with what I have experienced.
"I feel that Im doing well and Im glad that I got the new Spectra. I was doing well before - so there was not a big difference - but over time, there has been quite a bit of improvement in understanding in noisy areas. Another area that has changed is with music. For a long time all music was a terrible noise - and singing still is uncomfortable - almost painful to listen to, but some music I can now enjoy, especially if it has a good rhythm and a good beat. We watch the Lawrence Welk show on TV and its entertaining and has a good rhythm, So I can enjoy that even though I dont know what they're singing about.
"It was interesting to read about a lady that got her implant hooked up around Christmas and she enjoyed the Christmas music right away. She was very fortunate in that regard.
"I wonder about the lady in Alaska that has so much trouble with humidity. Like you, Ive never had a problem, even when walking in the rain or going into a misty bathroom. Do you suppose the word processor could be faulty?
"Im still using a battery that I started on 8-15-94, almost 22 months ago and I have used it almost daily. Admittedly it only last about 6 hours now - but around the house, where I can replace it easily, its OK.
"I thank you, Gordon, for demonstrating that a cochlear implant works well. Until I met you, I wasnt sure they were for me, but you convinced me and Im glad."
Letters from our readers are welcome. It is the sharing of ideas that make this newsletter interesting. If you have a thought you would like to share or something you are doing that might benefit another person, please share them with us.
At the present time, most of the information in this newsletter concerns the Nucleus 22. We are gaining readers who have the Clarion. We would be delighted to share things that are also helpful to our Clarion implantees.
We are very interested in hearing from parents of implanted children so the information can be shared.
Thanks to all of you who wrote in for this newsletter. I am
certain your letter will help someone else. Implant Center Coming
to Missoula, MT
I received a letter from Dr. Peter Von Doersten stating that he is setting up practice in Missoula, Montana in September and would like to begin a Cochlear Implant program.
If you are interested in more information you can contact him
at the following address after September 1.
Rocky Mountain Eye and Ear Center
700 W. Kent Ave.
Missoula, MT 59801
If you have friends in the Montana area that have put off getting an implant because the "Implant Centers are too far away" tell them they now have one in their area.
Virginia Mason Expands Their Cochlear Implant Program
[Following is a press release received from Suzanne Quigley, Ph.D. of Virginia Mason]
"In the last newsletter, Virginia Mason Medical Center (VMMC) announced the expansion of their pediatric cochlear implant program to include the Clarion device. Now VMMC is pleased to announce that the adult cochlear implant program has also expanded to include the Clarion cochlear implant system.
"The Pacific Northwests largest implant center,
VMMC has been invited to participate in the Adult Clinical Trials
now underway for determining the safety and efficacy of the 1.2
Clarion device. This means that VMMC is the only implant center
in western Washington to offer evaluation, surgery, and
postoperative programming for both the Clarion and Nucleus
cochlear implant systems for adults and children.
"For more information or to schedule an appointment call 206-223-8802."
Mark your calendar for June 28-30, 1997 for the National CICI Convention. It will be held in Sturbridge, Massachusetts. I have never been in that part of the country so have already marked my calendar. I hope we can have a very large turnout from the Pacific Northwest.
If you have never been to a national convention, you have missed an opportunity to meet other implantees from around the nation. If you are a parent, it is your opportunity to meets other parents and share the joys and frustrations you face.
National CICI members receives a discount registration fee. So, if you are not a member of CICI, check out the CICI Membership Information.
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