The official newsletter for the Pacific Northwest Cochlear Implant Club
Volume 5 Issue 4
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AG Bell Convention
June 26-30th in Salt Lake
As mentioned in the Spring edition, the AG Bell convention will be held in Salt Lake City June 26-30th. An all day Symposium on cochlear implants will take place on June 27th dealing mainly with cochlear implants in children.
If you would like more information about this convention, please contact Ed Pottharst, 4460 Woodland Park Ave. N #6, Seattle, WA 98103. Phone 206-547-9635 or via E mail firstname.lastname@example.org.
SHHH Regional Convention
October 25, 26, and 27
Many of our Implantees are also members in SHHH. Not only are they members, but several of them are officers in their own SHHH Locals and spread the good word on implants.
There will be a seminar Saturday afternoon on implants. Dr. George Gates, Executive Director of the Virginia Bloedel Hearing Research Center at the University of Washington will be discussing Implants and who is a candidate. Both Cochlear Corporation, and Advance Bionics will have a booth in the exhibit area. This is a real opportunity to talk with the vendors first hand and learn from them what the implant can do for you.
In the Exhibit area will be several exhibitors who sell assistive devices. Bring your patch cord, if you have one, and try out the many different devices.
All of the meetings will have real-time captioning as well as FM and Infrared assistive devices. Again I urge you to bring along your patch cord and try out the different systems and find out which system works best for you. You might be amazed at how much an assistive device can improve your ability to understand in group settings.
If you would like more information on the Portland Convention contact Gordon Nystedt. Address, E Mail, and Phone number on last page. We are expecting a sell-out so I urge you to register early if you do plan to attend.
Legally Blind person Enjoys Implant
Tim Smith, Bremerton
I would like to share with you some of my experiences. On January 11th I was hooked up by Sue Sanborn [Audiologist, University of Washington].
I was so happy at the very first mapping. I could hear Sue talk slow to me. I cannot read lips because I am legally blind. I was so surprised to hear slow voices at the very start, because I did not think I would hear at the beginning. Now it has been two months and I can hear slow speech over the telephone.
Yesterday I went out into the garage and I had my cochlear implant on and could hear the neighbor kids talking next door. I can also hear birds and dogs barking. I have missed so many sound like that for such a long time. I have heard that in time my hearing will improve more.
Psalm 103:2 - Bless the Lord and forget not his benefits. [Editor notes; It is so wonderful to receive letter like this one. Most of us felt sorry for ourselves when we could not hear. I can not even imagine what it would be like to not only not hear but also not be able to see. It is so exciting to share the story of Tims success!!!!! Yes, Tim, your understanding will continue to improve.]
Peter Goede, Tacoma, WA
A very special thanks to Dr. George Gates and his team, Sue Sanborn, and Dr. Tom Rees, all from the University of Washington for their time in providing information about the Cochlear Implant. I was still in my research mode for the past five years, until I met with one very special gentlemen, that is Gordon Nystedt, president of the PNWCIC. I also received a lot of support and encouragement from my family and close friends. With the Nucleus 22 device, I was implanted by Dr. Gates on the 19th of January 1996. "Thank You" so much for all of ;your help and support in my research to go for it! The surgery itself was very successful. There wasnt any side effects or nerve damage.
The only problem Im dealing with is soreness and numbness where the device is implanted on my right ear. The reason why it took so long is because I was having a serious bout of on -going tinnitus in my left ear.
I was born with a severe hearing loss and was diagnosed with "progressive nerve deafness" and my right ear was "dead." At the age of 4 years old, I was fitted with a hearing aid that weighed 3.5 pounds! Then on up to the "behind the ear", till February 17, 1973, was the day I lost all my hearing without warning. That completely devastated me. Tinnitus started very shortly after that, 24 hours around the clock, seven days a week. It was very annoying! I spend half of my life in an Oral School to learn to speak as well as speech reading. Right after my hearing loss, I continued to speak and learned to lipread. Sign language helps a lot. Most important of all I had a dream, that I was going to hear again, somehow. I prayed for it ever since 1973.
In 1991, I went to see Dr. [name withheld] in Seattle, and he found out that I had some hearing in my left, and I was fitted with a very powerful hearing aid (behind the ear). Dr. [name withheld] also made a recommendation for a cochlear Implant. Right after being fitted with that aid, it caused the tinnitus to get way out of control. It was roaring loud like a runaway Locomotive!
The tinnitus has got to stop, and Dr. [name withheld] felt the cochlear implant would not work. Again, that completely devastated me, and I felt like, "I wanted to die!" I didnt give up my dream to hear again. After being totally deaf and I mean completely deaf. Whenever, I put my ear in front of a 300 watts speaker, I couldnt hear anything, not even an airplane at close range!
Now after 23 years of total silence, I was hooked up on the 22nd of February, by Dr. Sue Sanborn. I was totally amazed to hear the sounds, that I dreamed to hear again. I can hear just about all of the environmental sounds, as well as words being spoken, but unclear to understand without the help of speech reading. I also noticed how noisy and loud this world is.
Running water and newspapers is the worst of all, but Im starting to get used to it. To my understanding, the mapping and nerves will improve as time goes by.
Everyday I hear new sounds, the hardest part is trying to know where the sound comes from. While at work, I was able to find out a sound that was bugging me for sometime. Im a welder, and I work in a very noisy shop. That sound was from the motor running out of hand drill!! I was working on the other side of the shop! Theres another sound that I was surprised to hear, the sound after striking a match!! I can hear the sound of the flame! There's so much I want to share.
At each mapping day, I had to lower the loudness down a bit and raise the low tones up higher. I have reason to believe that the nerve in my brain has been asleep for over 40 years and one by one wakes up from hearing all the sounds. After my fourth mapping, my Spectra 22 is set at "N" more than at "S" which I only use at work. The volume control is normally set between 1 and 3 depending on where Im at. I am starting to see that Im much more relaxed.
I have one or two more mappings to do, and I hope this will help me to stabilize the tones. My biggest surprise was just last week. I was able to hear the organ fairly well. This makes me want to continue my dream to play the piano again.
I have a long way to go in learning how to recognize words without speech-reading. Cindy, my fiancée, talks to me all the time and Im learning to understand words pretty good. Our communication has improved a great deal, as well as with my family and friends. If you have a dream to achieve, go for it. Just like what Martin Luther King said. "Dont give up your dream." I will let you all know how my dream comes out with music. Most important of all, for all the tremendous support, understand, and love goes to God and Cindy. God bless you all.
PS. I still have tinnitus whenever Im not using the Spectra 22. While Im using it, it pushed out as much as 90 percent and hardly noticeable. If any of you out there has this annoying tinnitus, please contact me. I would do more research on what cause this and how to get rid of it completely. Was told there is no cure for this type. So what do you think of that?
Sedro Woolley, WA
[Jim Brown was implanted by Dr. Charles Mangham Jr. Seattle Ear Clinic. His Audiologist is Jennifer De Castro]
I have the implant! It was inserted during day surgery on February 8. The worst part of the entire procedure is the anesthetic after effects. I have essentially no pain, probably partially due to my SLOW nervous system. (I am sooo dense that the pain just does not register in the brain. I think I have a brain anyway.) I had no facial nerve effects, no numbness or phantom toothaches. The scalp and skin behind my ear is quite irritated and the 10 days without being able to wash my hair almost drove me up the wall.
I go hot-wired or hooked up to the external components of the system on March 7 and 8. Two 3 hour sessions to become familiar with the components, initial adjustments, and checks, and start reprogramming my brain to understand a different sounding speech spectrum.
I can understand normal speech again. I have now been connected only three weeks but can understand 95% of one-to-one conversation in normal environments. I havent used my white board since hook-up. [Editor note. Jim used to carry a white board with him for people to write down what they were trying to say to him.] I do not do as well in noisy or group situations yet. But there is lots of hope and potential I have not explored yet.
Sure sounds sound different. I can not say like Donald Duck, though there is a squawk undertone to certain pitches. There is none of the distortion of loud noises I experienced with hearing aids. Soft or distant sounds are a bit more squabbley. There is a volume control, as most people call it, on the machine. There is sensitivity control and noise suppression switch. The sensitivity dial acts like the squelch on CB and 2-way radios. My Audiologist suggests that I use setting 2 1/2 out of a range of 0 to 8. O being squelch everything. The noise suppression seems to be programmed function. After switching it on, one must wait a few seconds for the machine to sample the noise level before reducing it. I have been instructed to not change the sensitivity level while on noise suppression. Both functions do work fairly well.
My C.I. is in the left ear and I experience a lot of wind noise from the closed window while driving. With the noise suppression on I could understand the majority of a familiar passengers speech. Likewise at a noisy dinner table.
But it is still only one ear trying to do the job of two. I can not focus on a conversation to partially tune out others sounds. I can not locate the source of sounds with binaural hearing. You just can not beat natures system, so my advice is to try to keep what you have by using it. Which means if you need hearing aids, get the ones that do the best possible job for you in both ears. AND USE Them. It takes practice and patience!
Since the speech processor converts analog (continuos spectrum sound to digital (discreet or incremental steps) it does poorly with music. So far about the only music I can identify as being music at all is piano. I can usually follow a beat but no melody or harmonizing. The ReSound unit I had the past three years could follow melody but did so poorly with harmony and tonal quality it was not much better. The best hearing aid for music that I tried was the Danish made Widex Quatro. Oh well, gain some, lose some.
People are willing (or able to stand) conversing with me now. I am told that I have much better voice control and that I appear to be much more relaxed. I suppose now that I am getting into the habit of not looking directly at a persons face (but apx. the left shoulder) to speech read helps also. (For those of you wondering what in the world? I had the central vision of my good eye burned out last October to slow down the spread of subretinal neovascularization macular degeneration.)
So, keep at it, keep trying and searching. Someday you might find something that works. [Editor note; material taken from the Skagit SHHH Newsletter]
Child Age 4 Has Implant
Jordan Jadallah, Bellevue, WA
Jordan, who turns four in June, was diagnosed with congenital severe-profound sensori-neural hearing loss in December at 17 months of age. One month later he was fitted with hearing aids and began auditory verbal therapy. However, it wasnt until October when we went to Virginia Masons audiologist (Suzanne Quigley & Carol Brazil) that we finally got a good fitting. Even though Jordan made progress we started to consider a cochlear implant in Jan of 1995. My husband attended the national Institute of Healths Cochlear Implant Consensus Conference in May 1995. At the time, we felt it was too early and we need to keep trying with hearing aids. We also, at this time, were expecting our second child. So we put in the work and the time. With Jordans audiogram with thought he could do it. Jordan started mainstream preschool in the Fall of 1995. He is extremely easy going but started to show some signs of frustration and his progress slowed during the summer and fall.
In January of 1996, Jordans auditory verbal therapist who is very conservative when comes to the implant, surprised us with the recommendation to consider it. We realized that what Jordan was hearing must not be making much sense to him. He has a good amount of residual hearing so we thought something must be distorted in some way. I was nine months pregnant needed to wait until after delivery. Eric arrived on January 15 and tested normal with his hearing. We were now ready to focus on Jordan. We are people who need to investigate everthing. So we looked into different places to have the surgery. We chose University of Iowa and Dr. Gantz to implant the Clarion. We simply were the most comfortable there and they could do it quickly and they were very positive about implanting children with Jordans level of residual hearing.
The surgery was on March 15, 1996 and after a few days, Jordan was back to his normal playful self. (We joke that our recovery was much longer!) We went back to Iowa on April 25 for the mapping. We stayed the weekend and remapped on Monday. After a few days of power struggles over wearing the harness and implant, Jordan wore it regularly. They told us that it might take a month or two until Jordan understood everything with his implant that he did with his aids.
It took a week! Every day he discovers something new that he never reacted to before: the tea kettle, the oven timer, his brother crying, the sshh sound. He now picks up the phone when it rings. He never did that before. Today, it was ridged bowl on the hardwood floor. He rolled the thing around kitchen for 5 minutes calling us and telling us he heard this. Dropping things on the floor has never been so fun. I would not be exaggerating to say that I get tears in my eyes each time he discovers a new sound. His speech is already improving and he makes sounds he never did before. We know we have a long road ahead but when good things are reinforcing it we know it will go well. Before Jordans surgery, I spoke with a mother who said she had given her son a gift with the implant. Well, we full believe it as we see the joy in his face as he plays with sounds. Its been one incredible month.
First Implantee at Madigan Hospital
Dorothy Wood, Tacoma, WA
Right after surgery I had the usual pain in the site but also my cervical spine was paining more than it usually does. I have deterioration of the spinal column, not unusual with aging women, so have dealt with that for several years. Pain medication gave me a lot of relief. The swelling persisted and there was some drainage and Dr. Schall checked it almost daily. Finally he looked at the area using ultra sound and it was a blood clot, which he and Dr. Langman thought would drain on its own. A couple days later it was viewed via ultra sound and it was unchanged and edema continued. On his next examination he applied considerable pressure and it finally came through the drainage hole. He was able to get a half cup of what looked like blackberry jelly to me and then he put on a very tight pressure bandage so I went to the March SHHH meeting with my head wrapped to get a hair cut, which made me look less like a wild woman.
On March 20th we flew to Mazatian for 10 days to stay with our daughter in her condo. No problem with the surgical site, just the neck problem, so I continued the pain medication. Perhaps the positioning of my head and jaw to accommodate the air wave during the 3 1/2 hours of surgery influenced the vertebrae. I know my jaw wouldnt open very wide for a few days because of the pain in the TMJs.
We returned on March 30th and I returned a hearing aid to Shann in Gig Harbor as I rented it so as to hear better than I do with my own aid. Hers was computerized and was better, but not enough to keep using it until the programming, which began on 4/29.
Carol gave me the first 10 levels that day and as you know that takes time to figure out the even loudness. Sounds were sharp and clear and didnt sound like the Donald Duck as I had anticipated. I conversed with my husband in the car and understood what he said without looking at him, so we were both delighted as that had been impossible previously.
The next day he and I did a volkswalk in the Steilacoom area and I was really excited as we could converse as we walked and didnt have to look at each other so I could read his lips. I heard the birds chirping for the first time in years, heard the train on the tracks and was aware of all the environmental sounds. It was wonderful. Now I was talking to him instead of him just being a listener to what I said.
The following day Carol added the rest of the levels and it was very difficult for me to determine the even loudness, but we finally had a mapping to try overnight. There was considerable static and it persisted in the car, at home, and the next day; however, it became intermittent and she decided to test the processor. It turned out to be defective, so we changed to a loaner and mine has gone to the factory for repair. It necessitated going over the mapping again so I am going through a week of adjustment before seeing her next Wednesday and once a week for three more weeks thereafter.
Some sounds are somewhat "tinny" and paper and plastic bags "crackle". I do not get some words my husband says as they do not come across as clearly as they did after the first mapping. Well see what happens by Wednesday and after that. So far, I am very pleased with everything and anticipate it being as successful an outcome as yours!! I have been and will continue having a positive attitude
Dr. Schall will speak at the Tacoma SHHH meeting on Saturday and it will be most interesting for me because so much of what I talked about prior and following surgery was to my husband as I couldnt make out much of it.
I will let you know how things go as time goes by. We will spend 6 days in Victoria the last of May doing the volkswalk and attending their annual walkfest, so I will have unlimited opportunities to experience sounds. If the German band plays Saturday night I might even be able to make out a note or two!
Thank you for all your encouragement and interest and for including me among the numerous people for who you are so helpful. [Editor note: Dorothy was implanted by Dr. Schall at Madigan with Dr. Langman from Virginia Mason assisting. Her mapping was done at Virginia Mason by Carol Brazil]
As of May 20 Ive had my Spectra speech process 3 months plus a week. I can identify 3 stages of response during that period. The first, described in the Spring newsletter, featured new maps in rapid succession and after each one a roller coaster of reactions - to the strange quality of the sounds, to heretofore unheard sounds, to annoying sounds like running water, to physical stress and fatigue. Previously I had adapted, if not happy, in my own near-deaf world. I sometimes regarded the new sounds as a threat to an isolated mental world comfortably ruled by my own thoughts and imagination. Countering those difficulties was the delightful and stunning realization that the implant was going to work for me.
The second stage began about a month after hook up. New maps were less frequent, more similar and my reactions less severe. But I still wrestled with a steady physical stress from the stimulation. I felt lopsided, disoriented. My mind liked the processor but my nervous system rebelled. This was partly because I tend to set maximum loudness levels too high when making maps - listening to single, sometimes pretty tones in the audiologists quiet office.
I began testing myself in new situations - meetings and restaurants. The cumbersome assistive devices Id previously used did not work with the processor. So I made do with suppression, lower sensitivity and occasionally the lapel mic (on a long cord). It was tough but I did no worse than with my hearing aids plus assistive devices, and sometimes surprisingly better. Several people told me my speech had changed, become more precise. I didnt notice progress but sometimes others did. My physical therapist said, "Hey, you understood me while lying face down." My expectations had changed too. I arrived for hookup with very low expectations. But the initial success inflated my hopes for "too much way to soon" (the words of Gordon Nystedt, the voice of experience, who fielded my questions via e-mail so very thoroughly and reliably throughout this adventure). I needed to remember the limitations of the device and maintain patience.
The third and current state began about a month ago when mornings began to arrive without my feeling that my nervous system was primed to defend itself against the speech processor. I still have a minor taste disturbance and sometimes mild headaches but the implant and processor at least feel like they belong. Ive had the same map for over a month with occasional minor adjustments. At some point a new map will be necessary. Im not eager because I know the difficulties of adjustment. Some conversations are so effortless that I forget about my hearing loss. Meetings, restaurants and group dinners are still very tough. Many people have stopped talking up to me. So I use the full range of speech processor sensitivity settings to try to adjust to a voice or setting. There are still unnatural and unpleasant sounds - several people laughing, dogs barking, unfamiliar voices. The latter tend to sound hoarse as do many voices over the phone. Familiar voices are beginning to sound more normal, although this varies and sometimes seems to depend on how tired I am.
I now use the phone for personal but not business calls. Some calls are difficult and I must ask for much repetition. The important thing is that I know calls will become easier and thus my attitude is positive. Residual hearing in my non-implanted ear creates a strange effect. At very low frequencies that hearing is nearly normal. This combined with implant hearing makes some speech sound like chords (if the voices contain those low frequencies).
I expected to find the speech processor, wires and headgear cumbersome and annoying but find them no more difficult to manage than my hearings aids - especially because I so often had to use assistive devices with the aids. Management of the equipment pales compared with my greatly improved quality of life.
I am also aware that responsibilities go along with better hearing. I cant cop out any more because I dont understand! Several days ago I spoke with someone who is just beginning to struggle with hearing loss, who sounded so frustrated and depressed at the realization that he is hard of hearing. There I was, overjoyed to be hard of hearing again. Its all perspective, isnt it? And the pleasure of hearing birds again. I can now identify the song of the write-crowned sparrow. My hearing husband missed it!
Update on Child Age 6
Mark A Gingery
My daughter Andrea was implanted with the Nucleus 22 in July of 1992 by Dr. Black at Good Samaritan Hospital in Portland, OR. Andrea will be six years old in March. She has a speech helper (interpreter) and gets about 5 hours of speech therapy a week. Her speech is improving steadily. She is doing average in school, which is great to us, and gets along socially very well. Her mother and I are very encouraged with her progress. Everyone, teachers, therapists, day care people, and friends are very supportive. We are thankful to all of them.
Thank-you for your newsletter. It is very interesting to hear what is going on out there, as we get very little information otherwise. You can count on my continued support.
Medicare Pays for Spectra
I thought Id let you know I received a $2919.42 check from Medicare paying for my speech processor upgrade. The upgrade was in December 1994 but it must have been late summer or fall 1995 before a claim was filed.
That money definitely looks better in my bank account than in the Medicare account!!
Oregon Medicaid and Implants
It is my understanding that the Oregon Medicaid office will be meeting with professionals from Oregon May 30th to discuss Oregons policy of excluding implants. I wish to thank those of you who took the time to write to express your opinion. It is people like you who help make things happen. I will let you know the latest in the Fall newsletter.
Thanks for Your Support
This newsletter would not exist if it were not for the financial support I receive from our readers. It is both you financial support and you letters that keep this newsletter going. Following are the names of the people who have contributed since last newsletter.
A special thanks to all of those who sent letters that are printed in this newsletter. It is the sharing of information that makes this newsletter a must reading, especially for those considering an implant. Just as someone's story might have helped you, your story can help someone else.
National CICI Membership
We have had a dramatic increase in national membership in the past year. Yet there are still many of you that are not members of CICI. While our local newsletter updates you on the things that are affecting us in the Pacific Northwest, the National Magazine CONTACT covers the world scene.
The 1997 convention will be held in Boston June 28-30. I have never been in that part of the country and do plan to attend. I urge all of you to join National and read about the upcoming convention. It is a chance for you to meet hundreds of other implantees. If you are a parent, this is a great way to meet other parents and learn of their trials and joys. So when you think of where you want to go for your vacation in 1997, I hope all of you will be thinking "Boston."
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