Nancy's Cochlear Implant Diary

This Diary cannot be reprinted without my permission. I reserve all rights to this material.

Foward mentioning of those who supported me throughout my journey.

Vivian G. was my most informative source of information about the CI. Vivian was implanted with the Nucleus 22 about six months before I decided to persue my implant. She answered countless messages through e-mail. I am deeply indebted to her patience and compassion during that time of my journey. I am also thankful to her friend, Joanne Syrja, of Advanced Bionics, who helped me get insurance coverage.

Lorie Singer has been a great friend through e-mail and we still keep in touch. Lorie was implanted about 9 months before I was and is a wonderful source of information about the Clarion. She found the answers to many of the questions that I have had in exploring how the CI works. Lorie has helped so many people seeking the CI and should be recognized for her hard work, all of it volunteer.

My wonderful husband Richard, who passed away a month and a half after hookup. He stuck with me throughout my years of deafness and when it came time to make a decision about the CI he said he would support my decision wholeheartidly. He stayed over night in a hotel in Boston so that he could be near me because I was afraid I would not be able to communicate with the staff if I had a problem. Fortunately, no real problem arose. He went to the other side knowing that I could hear. Strangely, the night he had the fatal stroke, it was not words that passed between us. He was unable to speak, but squeezed my hand three times in a pattern that meant, "I love you." May he rest in peace.

My dad who has gone with me to all of my mapping sessions and work on trials. He has the patience of a Saint. He is happy knowing that I can hear again. He is so relieved.

Peter Constantinidis who hosts the CI Listserve at York U. Peter has given me the opportunity to discuss issues about the CI in an open forum.

To all the people who participate in the CI Listserve at York U. You are a wonderful bunch of people!

To HMO Blue, my insurance company. They gave me the opportunity to hear again.

Most of all, my surgeon, Dr. Joseph Nadol. His excellent surgical skills were a key factor in the positive result of my CI surgery. In addition, Cheryl Glovsky, audiologist at MEEI.

Prelude

I decided that I would like to get a cochlear implant in the summer of 1993. At that time, I had to get approval for the implant from my insurance company, HMO Blue. The insurance company gave me the run around for several months, and then finally declined the CI based on the fact that I had chosen the Clarion and it was not yet approved by the FDA. The following is an account of events after the Clarion was approved by the FDA. Three years after I initially had made the decision to get a CI.

March 26, 1996

I received a message today from Joanne Syrja, of Advanced Bionics, stating that the Clarion had been approved by the FDA. Hooray!!! I'm so excited; I don't know where to begin. I guess I must let this sink in. I received several e-mail messages from people who learned about the Clarion. All were supportive. It's nice to have friends out there in Cyberspace.

March 27, 1996

I called HMO Blue and asked them to reinstate my referral to MEEI for the Clarion. They said that the previous referral had been denied so it was between my doctor and my insurance company to get the referral process going again. I faxed a letter to Dr. Jennings asking her to once again put in for a referral for me to go to MEEI to receive the Clarion.

March 28, 1996

I received an e-mail message from Joanne Syrja stating that she had talked to Barbara Herrman at MEEI. Barbara gave her the number for the managed care office. Joanne will be working with them as soon as the referral process is taken care of. Barbara was happy to learn about the Clarion approval.

April 6, 1996

There is not much going on today. I am just waiting things out and hoping that the referral process goes through soon. I am keeping in touch with other implant users via e-mail; logging on to Beyond Hearing to get perspectives from other CI users.

April 9, 1996

I called HMO Blue to find out what was going on with the referral process. I had called on Wednesday and they said to allow 48 hours for a decision. I talked with Brenda Martin and she said that there had been a mis-communication with Dr. Jenning's office and that she had to contact Dr. Jennings to get the information to Management. She said to call back on the 23rd of April to get an answer. I am getting discouraged, as it looks like I'll be getting the run around once again.

April 10, 1996

I got a call from Dr. Jennings office stating that they needed a doctor's name in order to put a referral in to MEEI. I gave them Dr. Nadol's name.

April 20, 1996

I finally got approval to get into MEEI for the implant evaluation. I made an appointment but they couldn't take me until May 19th.

May 15, 1996

I got a note from MEEI saying that my appointment would be canceled due to the need for Dr. Nadol to be present in surgery. I made another appointment for June 6, 1996. I had to call Dr. Jenning's office to ask that they put in another referral for me as I am now required to use Richard's HMO Blue account as the primary account. Once again, the referral was accepted for me to go to MEEI.

June 6, 1996

I went in to MEEI and met with Dr. Nadol's assistant. He was a very nice person. He gave me a basic ENT exam and then sent me down to audiology. After a very long wait, I was given a basic hearing exam. My speech discrimination was 2% without lip reading. That is a very poor score. Yes! This is the first time I have been happy about a poor hearing exam. After the hearing tests, I went down to Dr. Nadol's office. I met with Dr. Nadol, finally! He said that he thought that I would be a good candidate for the implant. He went over the pluses and minuses of the surgery. On the minus side, I may not get a good result from the implant, could get facial palsy, plus dizziness as a short term affect. Of course he would not state what sort of result I might get from the implant. It was very late in the afternoon, so I didn't get to go back to the Hearing Aid center for more testing.

June 23, 1996

I went in to MEEI for a CT scan. Boy, was that awful. It wasn't bad until they tipped me back with my head way back in the tray. It seemed to take forever and I couldn't swallow and wanted to lift my head up so badly. Finally, I gave up and told them I'd had enough as it didn't seem that they were doing much of anything. I got dizzy from watching the camera go around in the tube. It seems that they were done anyway. What an awful way to take pictures. I've had more flattering poses.

After the CT scan, I met with John Hurley who is the social worker that works with the implant team. I thought he was super! He speaks very softly, but uses some signs to keep a person focused on the questions. He asked lots of questions about my hearing history and mental health history. He seemed to feel that depression and hearing loss go hand in hand. Also, he asked questions separately with Richard and also myself alone. Mostly the questions focused on whether or not we thought things would change at home after the implant. He gave us both questionaires to fill out at home and return to him.

After my visit with John Hurley, I was sent down to meet with Don Eddington. Don is the head of the implant team. I found him very easy to communicate with even though he has a beard and mustache. He explained the implant pros and cons once again. I asked some questions about dizziness. He explained that it should not be long-term, and that I should expect dizziness and nausea immediately after surgery even though I don't normally have a problem with the anesthesia. The surgery takes place very closely to the balance mechanism in the middle ear so that when swelling takes place, it throws the balance mechanism off. I asked about using three speech processing programs in the Clarion. One for quiet, one for noise, and maybe one for music. I asked if that was feasible. He said that most people find one program that works well for all three. Though, it is possible that one might find a different one for music, most people use the one program for quiet and noise. Also, I asked, why not the Nucleus, then, it can carry one program in the speech processor. He said that the Nucleus, at the present time, does not have the ability to use the type of speech processing programs that the Clarion does. At about 4:15, we headed home.

June 3, 1996

Richard got a call stating that I needed to have more speech testing. I thought that my case might get in to the July 5th meeting for CI candidates, but it seems that I need more tests. That means that my case won't get in until the September meeting. It's just as well. I don't want to be going through surgery during a hot summer.

June 8, 1996

I went in to MEEI for speech testing. My appointment was supposed to be at 9:30, so we headed in early. I had to wait till 10:15 to be taken. I worked with Lynn Davis. She gave me hearing tests to determine my speech discrimination capabilities. The first set was bi-syllabic words that had about four words in a group. I had to pick the word that I thought I heard. It was not that hard, and seemed like I could not easily mistake one word for another. Then I was given words that were more difficult to choose the answer. Many could have been one word or another. After that, I was given vowel sounds in monosyllabic words that were very similar and very difficult to determine the difference. After that, I was given consonants in monosyllabic words to determine if I could tell the difference between consonants. Then I was given a test using a 'talking head' on a video screen. The woman had very little lip movement and only her mouth moved, not any other part of her face. It was very hard to read her lips. I had to listen and read lips at the same time. I missed some parts of some sentences. I don't think I missed any completely. Then I had to read her lips without sound. That was very difficult. I only got parts of sentences and there were a couple that I didn't understand any part of the sentence. That was a very difficult situation. It is necessary for control purposes to have the woman "talking head" for all candidates. Furthermore, she should not give any other cues than speech reading to the patient.

After I was finished with the testing, Dr. Davis fit me with a body aid. I have never worn one. I said that I'd like to have it in both ears, so she fit me with longer tubes to my ear molds so that I would be comfortable. The idea is to give me more low frequency sounds that my hearing aids have not been picking up. I am hearing sounds that I have never heard before, but they aren't helpful. I can hear the fan on the refrigerator, the trucks going by the house, the engine in the car, the dog growl, my feet walking on the floor, and my stomach gurgling. I heard the washing machine in the basement for the first time in years. I am missing the sounds that cue me in to speech. I can't hear my modem dial, the phone ring, or my printer picking up paper from the print tray. I am missing most of the cues that I use for speech reading. I have the unit on a stretch belt around my waist. It seems comfortable there. I don't have a problem with wires as they are clipped behind my head with a bobbie pin. I thought that I had the situation all worked out yesterday until I had to go to the bathroom. I had the unit clipped to my waistband of my slacks. I didn't realize I'd have to do something with it while I went to the bathroom. I now know how those speech processors get wet. I found the stretch belt in my drawer this morning, and it seems to be working out better. I just wish the cord was a little longer to give me more freedom of movement. I tried having the unit clipped to the front of my shirt at the neck. It did not feel comfortable there, and seemed to be in the way. Also, I felt like I was speaking too closely into the mic.

Another reason for the body aid is for me to get used to using a product that is similar to the implant. I have to get used to having something that must be worn on my body. I have to put it on before dressing, and of course as I stated, going to the bathroom. It is good practice.

Dr. Davis stated that she would wait until the CI team met and decided whether I would be a good candidate for the Clarion. If it is determined that I will be a good candidate, I will return for more testing which go with the Clarion trials.

November 6, 1996

Today is surgery. I checked in to MEEI at 11 AM and was in surgery by 1:30 PM. I left recovery about 8:00 PM. I think I was in surgery about 4 to 5 hours. The doctor said everything went fine and the electrode array slid right in. I had some dizziness after the surgery, but not vomiting. I was concerned that I might be really sick. I didn't sleep well as it was a strange place and I had Tinnitus roaring in my head all night. I shook for several hours after the surgery. A Neurologist came in to visit to determine if there was any sort of neurological disorder. I told her not to worry, that it was from the anesthesia, and I had shaken after the birth of each child.

The next day two doctors came in and changed the pressure bandage and I dressed and was ready to go home by 9:00 AM. When I got home I was tired, dizzy, and feeling more discomfort. The pressure bandage was very painful and I had to leave it on for a week. I stayed in bed for the next two days and then as I began to feel stronger, I started sitting in the chair reading and using my computer. I wasn't sleeping well as the pressure bandage was causing a lot of pain. They ought to devise something else!

November 15, 1996

My post op visit to Dr. Nadol's office. He said everything looked fine and was healing well. I had vertigo, loss of taste buds in one side of my mouth and numbness of the scalp. He said all would go away in time. I met a woman named Maggie and she is doing a study on tinnitus and the CI. I did have a severe case of tinnitus the evening of the surgery but it went away and at the time I talked to her on the 15th, the tinnitus was better than it had been for a long time. Dr. Nadol gave me a Dec 19th date for hookup.

Thursday December 19, 1996

I woke at five AM and couldn't get back to sleep. I was so worried that the implant wouldn't work or the sounds that I would hear would be so horrible.

I had a long wait to see Dr. Nadol. He said everything was healing fine and he took out two missed sutures. He said I could proceed to hookup. and come back in six months.

Once again, I waited quite a while at audiology. Then audiologist, Cheryl Glovsky, came and took me to the special room for the fitting CI patients. I was amazed at how quickly the Clarion processor mapped.

When it came time to hear sound, I was amazed at how different her voice sounded. It was very soft. I was also amazed to hear my own voice. I thought I had a low pitched voice and it turns out it isn't. I could hear the pulse sounds very well. It seemed like an easy process. We did fine-tune it a bit and I left with a very low power map. That was just the beginning of the CI process.

Richard and I went to the cafeteria, which seemed very quiet. The cash registers seemed loud but there wasn't a lot of background noise in the cafeteria. I could understand a few words that the woman behind me was saying. I was exhausted.

On the way home, I heard the wipers rubbing against the car window because there wasn't enough rain. I could hear Richard speak but not understand his voice. I could understand a man on the radio who was doing an ad and I could understand that he was giving out an 800 number. I was impressed by that.

At home there were so many sounds to hear. My keys on the computer make a sound. My computer chair squeaks. I didn't like the sound of the humidifier fan, but in time, it got better. I could lip read the TV very easily without captions. Music was still different, but I did get some of it. I am finding the sh sounds to be too harsh. I am not getting the p, b, l at the beginning of words. The soft speech sounds aren't there.

December 20, 1996

Today things are much clearer. I heard the dog bark and her bark is altogether different from my hearing aids. I can hear her throat and the low growling sounds that go with the bark. It was not too loud, almost too soft. I think I need more in the lower frequency sounds. I read aloud to myself this morning. I am only getting some parts of the words. Lip reading is much easier and I am getting used to the fan on the humidifier, it's not noticeable any more. The clothes dryer is sick, it needs to be repaired and makes and awful noise. Water is sounding more normal. The vacuum cleaner was not loud, but I could hear the little pieces of material going into it. I can hear the TV going in the background, but can't understand speech. The women still sound like Minnie Mouse. I am getting more music.

December 21, 1996

Today sound is great but speech is still a ways off. I am not getting the soft sounds at the beginning of words. S,H,F,WH,TH,B. The L sound is getting easier to hear.

I went shopping and faintly heard the clerk ask for my zip code while I was looking for money. By the time I realized what she had said, I heard her say, "I need your zip code please." I then got my nose out of my wallet and gave her the zip code. Overall, I am understanding a bit more, but most speech is still unintelligible. A pleasant surprise was to discover that the car I am driving chimes when you start it up. I didn't hear that the first couple of days. I have upped the volume a bit more.

December 22, 1996

Today my tinnitus has taken on a very high frequency ring in the implanted left ear. The right ear seems to be making more low frequency hum and the head rushes.

I am having a difficult listening day. There is a high frequency sound that is very irritating. I tried turning the volume down and it goes down with the volume so I don't think it is tinnitus. I put up with it for a couple of hours and then shut the whole system back down to zero. I then turned the volume up to where I could understand the TV a bit. I then turned the sensitivity up to bring in more crisp sound. Speech and all sound seem to be better. I stayed up to watch Whoopie Goldberg in the Nun movie. (can't remember the name) As I was watching, speech became increasingly intelligible. I could match the voice with the person. I could understand a lot with the aid of captions. I was checking what I was hearing by watching the captions. There is a lot of music in the show. As the show moved on, I was able to listen and recognize more music. I'm not getting all the middle frequency sounds but the piano alone was good. I am able to hear some simple music. Drums come in well. I think guitar is good but a bit hard to understand. The singing sounds rather high pitched and like Minnie mouse.

December 23, 1996

Sound is even better today. I have identified the horrible ring to the hum of the refrigerator. It is a high whine. In addition, the humidifier is too loud. It is distracting. When I move near these two appliances, it is too hard for me to bear. Too loud. Speech is wonderful and I can understand my son with my back turned to him. The dog's bark is taking on a more pure tone. All sounds are becoming more pure. I am less tired than I was the previous three days. I read to myself this morning and I sounded good. At times, there was a double voice, but for the most part the S, T,O,M,P,A,I, are coming in very well. I need to work on the softer sounds. I'm very pleased at the progress that I have made so far.

December 24, 1996

Such a wonderful Christmas Eve. I couldn't believe how well I could hear voices in noise. I could actually pick out a person speaking in a normal voice while others were talking in the same room. It was wonderful. My family thinks it's wonderful that I'm doing so well.

I'm still missing soft sounds W, F Ph, and it seems like I need more high frequency.

December 25, 1996

I got a new Walkman for Christmas. I have been listening to Beatles Anthology and I can actually hear it, but do not understand all singing. I am missing a good deal of the music. I hear guitar in bass and higher frequency. One frequency seems to come through very loud. I think it's more in the mid-high range. The clapping on it sounds like frying bacon. I am not picking up the low drum sounds. It's neat though, cause I understand the songs from before. For the first time in a long time, I'm reel'n and a rock'n.

December 26, 1996

I went to the drug store to by some things and pick up some meds. For the first time, I could hear the pharmacist say he'd be right with me. I could hear him ask for my signature. What a relief, so much relaxation at dealing with strangers. I'm listening to the Beatles again. I need the patch cord, music isn't clear with the headphones, but at least I can hear it. I have adjusted the volume and sensitivity to get better sound. As I listen to it, it gets better. I'm picking up more harmony.

December 27, 1996

Second mapping today. All went very well. I never cease to be amazed at how easily the Clarion maps. The tones were set louder than previously and I am now hearing more than before. Cheryl Glovsky said that she thought I ought to be able to use the phone. She did a word test of monosyllabic words. They were hard ones to recognize. I scored 20 out of 50, which puts me in the high achiever category, already! Cheryl was delighted as I was. She gave me an assignment to go home and try using the phone for the next three weeks. I went home and asked my husband to call me on the other line. His voice came through nice and clear but somewhat like a radio. I had a hard time deciding where to place the receiver next to the headpiece. I was very pleased that I was able to hear him.

December 28, 1996

I am having a harder time getting used to this map. The sounds are different from the lower power map. I expect it will take a few days. We went to Woodman's for dinner. It's very noisy in there. I tried map #3 to filter out the noise and it worked very well. I got rid of most of the noise and was able to hear Richard and Kevin at the table. The sounds were very good. I was pleased with that as one of my biggest problems with hearing aids was listening in noise. I am getting more benefit from the implant than I ever got from aids.

December 29, 1996

While watching TV late in the evening, I noticed a loud tinnitus about 50 or 60 db. It was low in frequency and a buzz. Soon the sound from the CI took on another quality. Voices became more full and realistic. It was amazing how all of a sudden the sound quality improves and usually tinnitus accompanies it. I can now hear the TV the way it's supposed to be in stereo sound. I still don't have complete recognition of words. I still need the captions some. I am trying to ignore them, but find by habit I am looking at them still.

December 30, 1996

I called my father today to tell him that I was able to use the phone. His voice seemed sort of mechanical. I didn't know at the time, but I was almost out of my battery power. It died a few moments later. I suspect I would have heard him better. It seemed like the processor was shutting off and turning on and probably was due to low power. Dad was pleased that I am now back on the phone. So was I. I expect it will get better in time. I could not understand every word he said but I think some of the problem may have been the low battery situation.

January 1997

I decided that I didn't need daily entries in this diary. I have been practicing with my husband on the phone. I tried the head mic alone and then tried the phone adapter. His voice was much clearer on the phone adapter. I could use the head mic in any situation, but I feel that the quality of his voice is much better using the phone adapter for now. I am hoping as my comfort levels increase, the phone with the head mic will sound much better. I tried different programs and the program #2 sounds the best because it is clearer, louder and I can hear my own voice better. That way I can moderate my own voice.

I talked with my dad on the phone using the phone adapter. He sounded great! Just like he used to sound. I talked with him for about 45 minutes, which must be a lifetime record for us.

I got a patch cord for my Walkman from George DeVibliss. It works very well. The sounds are much clearer than using the head mic. I can now hear the Beatles voices and understand the words for the first time in my life. I can hear words in the song that I didn't know were there. One guitar sound isn't right. It is a mid-low frequency sound that is very gravely. It seems as if it needs to be stronger. I am also using program #2 for music. It seems to separate the voices from the music better.

I have decided that I need to do better with the TV. I tried using the auxiliary mic. It works quite well. I played with the sensitivity and found that if I turn it up, I get better sound. I have used the Aux. mic for about a week and am attempting to wean myself to the head mic. I find that map #2 is working best for the TV as well. The lower frequency voices on the TV aren't coming in. They sometimes sound weak and sometimes gravely. I understand many more words without lip reading . I can listen to whole shows, but in checking what I hear with the captions, I find that I am still missing some. I am not ready to let captions go. I at least need them as a check.

I have been listening to the car radio. I find that I can hear most speakers, but they do talk very fast on the radio and it is very difficult to understand the fast talkers. I tried listening to some Classical music. It was a piece with two flutes and a piano. I could hear the flutes well and it sounded good, just as I remember flutes sounding. I could not hear the lower notes on the piano. It was very weak even though my husband said it was supposed to be softer than the flute, it was just barely there. I am sure I need to boost the lower frequency and remember that we mapped it lower than the high. I still need to get my husband's voice. It doesn't quite pull in.

I have noticed a very high frequency Tinnitus yesterday, January 15th. Last night I seemed to be hearing much better. I can understand my husband without lip reading. I can understand more on the TV. The news is particularly good.

I got a phone pad from SoundBites, a round foam stick-on pad, which I placed on the receiver of the phone. I tried calling HMO Blue. Since they put you on hold and play music, plus speak, I thought it would be a good place to call. First, I used the phone pad. The sound was very good, much, much better than without the pad. I then tried the phone adapter. I had to turn the volume way up to understand with the phone adapter. It seems that the phone pad works quite well, and I will be using that instead of the phone adapter, which does not stick to my textured phone.

Last night I could hear my husband sniffling and snuffing because of his cold. It was driving me crazy and I suspect he will not be able to get away with his nasty habit of sniffing. It seems I can hear most everything. I could hear the fire horn blow at 12:00 this noon. Considering that the wind is from the east and the horn from the west, I thought that was a tremendous accomplishment. It's strange how simple things seem to be so enjoyable.

Last weekend we attended a large gathering at a restaurant. I was unable to hear people about 5 to 10 feet away through noise. I probably should have used the Aux. mic. I could hear the person on my implanted side, but could not hear my husband on my unimplanted side. I need more work on hearing in noise.

January 17, 1997

Today I went to MEEI for a new mapping. I had another audiologist this time. She did the mapping and didn't change the S and V settings before mapping. Then since it was so quiet at 9'o'clock, she remapped with the S and V settings at 9'o'clock. The result was echo at 11 o'clock with mid to low frequencies. I was very upset when I got home as I was unable to hear well with this map.

In time I have adjusted to the map, but I still can't get the volume I would like because of echo. I have changed to the non-sequential map and it seems to cut down the echo and clarifies the sounds. I will stick with that until next mapping.

It seems that I should do the map different next time. I should probably raise the mid tones and leave the low and high alone. I think they are high enough, but I'm not sure since I seem to be missing some of the women's voices on TV. It is very difficult to tell with the mapping that I have at present.

June 5, 1997

Since my husband passed away, I have not written in my journal. Today is my six-month evaluation and check up with Dr. Nadol.

I have been doing very well since changing my map after a bad-mapping episode. We went back to the CIS strategy with non-sequential firing and APEX . My scores at six month were:

• sentence testing- 100%
• double syllable words- 100%
• single words whole words- 68%
• single words phonetic- 86%

At around six months, I have near normal sound from my CI. The double voice that I was getting in the female voice seems to have cleared up. I can hear well in the low frequency. My nerve seems to have acclimated to the CI stimulation. I feel that I am doing quite well. I just wish I had a little bit more clarity with male voices. I am doing very well on the phone with the exception of a few male voices. I would like to have my program for quiet back again as the half-wave program doesn't seem to be doing much. I am able to hear well without lip reading, almost never asking for repeats. I still have to lip read in noise. I still can't completely get the TV but I am still working on it and am doing better than before. Music sounds better, still. I bought Forrest Gump sound track and it's terrific. I also am working on a sound track for the home movies that I transferred to video. My voice sounds better on the voice over than it did in the past. I don't know if I will see much more improvement with my Clarion. I think probably not. Improvement will be very subtle and most likely sharper improvement in speech discrimination.

January 10, 1998

Well, how time has flown. I went for my one year evaluation and I don't know what all test scores were. I do know that I did quite well. I asked to have the new extended frequency program put on to my speech processor. I was very happy with the results. I felt like I was getting better range of sound. The high and low frequencies were coming in better. My son Kevin's voice sounds much better.

February 10, 1998

I went back to MEEI because they wanted to see me in a month. I told them that my own voice was gravely and I would like to attempt to clean it up. I did some testing first. I did the best I have ever done with the extended highs. I got 80% on single word testing with just the words, no phonemic score. With the phonemic score, the results must be around 90%. I got 100% on the sentence testing, but the sound quality was not very good so we did some tweaking. I asked to have the firing order changed. I also asked to have the mid-highs and mid-lows boosted. We did that and the sound quality did not improve. We upped all "C" levels a bit and that made an improvement. I decided to go with that and when I got home, I found that I couldn't understand the TV, the sound was just garbled. I couldn't understand Kevin's voice either. It seems like the vowels are bursty. I will try this map for a while, but it does seem that the previous one was much better for speech discrimination even though my own voice was so gravely. I didn't use the new program much at work because of the noise. I can still use my number one program well with just about any setting.

Three Years later…

I stayed with the number one map for almost two years. On my third year anniversary, I finally decided to get a better map. I tried a PPS map and a new CIS map that was more level than the map I had been using for two years. It has been a huge improvement. I needed the boost in "C" levels. I did not like the PPS map. I tried very hard with it for several weeks, but could not use it for work. I can't understand speech with it. It does have some good qualities to it and probably could be mapped better, but I have decided that I am a CIS person.

Summer - Fall 1999

I have participated in a study with Maggie Whearty at MEEI. The study was a part of the development of a new speech strategy. It was a very interesting study, though somewhat boring. It involved setting threshold levels. I used a laptop computer that gave me beeps. I could set the initial level of sound where I could hear it and then the computer would drop the volume. I had to watch the screen. Three squares would light up and I would have to choose the square that had sound. As the computer dropped the volume, I would lose the sound. As it came back up, I would hear it once again. I had to do this for all sixteen electrodes twice. So, this was a long process. It did give me good experience at setting my threshold levels and was good listening practice. At my three year evaluation, I did some different testing that I found to be more challenging. The test was a consonant test that involved using a combination of vowels. There was the "A" in the beginning of the sound an "A" at the end of the sound with a consonant sound in the middle. AKA, ANA, ANA, AFA, ATA, etc. It seemed that there was no way to mistake the consonant being used. I found it to be a real challenge and did surprisingly well for a CI user. Maggie says I am functioning as person with a mild to moderate hearing loss. I am happy with that, as it is so much better than being deaf.

September 2001

At last! The BTE has arrived! I am one of the first Clarion 1.2 users to purchase the Platinum BTE processor. The following is a daily account of my experiences with the BTE.

On Thursday September 20, 2001, I went in to MEEI to get my Platinum BTE programmed. The audiologist was Amy Stein. We had another young gentleman along to observe. First Ms. Stein hooked the processor up to the computer. The gentleman asked me to check my magnet for strength. It was not strong enough so he added another magnet. The magnet holds very well and will not allow the BTE to fall to the floor should it come loose from my ear.

The processor was initialized and then the program of my choice, CIS, was loaded into the processor. It was a very quick process, as I did not need to make a new map. We used my favorite CIS map. It did sound a bit different at first. The Automatic Gain Control (AGC) was set too high. The voices were compressing too much. Speech sounded like it was fading out on louder parts of speech. I asked her to lower the AGC and give me less compression. It is much, much better. Testing immediately after showed no loss in discrimination.

The sound quality is much better. It is different and takes a bit to get used to, but the discrimination is as good upon initial testing. I was able to understand the words to most songs on the radio which I hadn't been able to do with the 1.2. (My car has a cheap radio) I was able to hear the TV much better without captions. I am using CIS and we discarded the PPS program since I wasn't using it. I feel as if I am more relaxed about listening.

I haven't been in a very noisy situation yet. I think it will be much better in noise. I was able to filter out all road noise while driving in heavy traffic. Regular conversation is good. I can hear better in the car than I could before.

Day Two with the BTE

Day two with my BTE was an incredible experience. While some things went well, others need work. First of all, I would like to explain that I am a Clarion 1.2 implantee using the new Platinum BTE. The upgrade to the Platinum has been truly a Platinum leap.

My work environment is very noisy. I find that I will need some work on settings. I could understand everyone, just couldn't get a good sound quality. I am dealing with a very noisy copy machine which is situated directly in back of me. There was no problem with distance hearing but close up, I think I needed more loudness and I will work on that one.

I did some more practicing on the phone. I found the "sweet spot" and also turned up the loudness control so that the phone has nearly returned to the quality I had with the 1.2. I am very confident that with more practice, I will do even better.

Most of all, TV listening has improved by leaps and bounds. I have the S control in slot #1. I went down two clicks and then switched to slot #2 to control the volume. Two clicks up and I was in heaven! The switching only takes 2 seconds to achieve and is actually faster than sitting and turning knobs. I might consider putting the loudness control in slot #1.

The harmonics on the Platinum are *incredible*! I had not been able to hear female singers so I decided a good practice would be watching the telethon. I was so overwhelmed! I cried for two reasons; the sadness of the songs and the sound that I was hearing. Women's voices are so beautiful! The piano now sounds like a piano instead of plunking, I can hear the full harmonics of it. So beautiful! The cymbals were just a clash before, and now they really resonate. The guitars stand out like never before and really twang! I admit the bass is too soft. Part of that could be my mapping. With the 1.2, I felt as if the lower sounds were overrunning the higher sounds. So, I set channel #1 a lot lower than the rest and channel #2 a bit lower than the rest. If I were to create a new map for music, I think I would raise them. There doesn't appear to be a need to filter out frequencies through mapping. The processor updates so fast that it isn't a problem. One would think that I have a whole new sound system on my TV and I didn't touch a thing on it and use the volume at 1/4 strength. Whereas I had not been listening to music much with the 1.2, I think I will enjoy listening a lot more in the future. Of course voices on the TV are 100% clearer. Full tone and pitch are there to help with listening quality. I am very, very pleased with my BTE thus far.

The following is a response to a gentleman who wrote to the CI FORUM on York Listserve. He said he though AB should make a right/left wire to the headpiece. One note: Someone wrote about being a lefty. I am a lefty. I have my internal implant on the left side. It is very low, just above the ear. There is no left and right fitting for the wire that goes from the headpiece to the processor. If I hold the processor in my hand with the back facing me, the wire comes out of the BTE in the middle, not to one side or the other. The wire goes out and the coupling is straight out so the headpiece magnet side is facing downward. It can be swung either left or right. For a lefty, instead of swinging the magnet side outward away and twisting it around, swing it toward you and it will go smoothly on facing the left side without the twist. The wire that goes into the BTE can move in one direction or the other. You can simply take your finger and press it more toward your head to tuck in the wire a little bit more. I do not find the processor to be heavy. I have the extended battery and wear the processor low to the back of the ear. None of the processor parts are on top of the ear, only the ear hook. This allows for better balance and weight distribution. So, if you find it too heavy, maybe a longer ear hook would help out to distribute the weight back more.

Day Three with the BTE

Today was my second day at work with the BTE. After some listening experience over the weekend, I have determined where I need to have the V. I have upped the V about 2 clicks and it is an improvement. I think eventually I will ask to be remapped with a boost in the M levels. I tried the two different automatic gain control (AGC) programs that I have. At initial turn on I did not like the default AGCII which was put on the processor. My audie had the foresight to leave one program with the AGCII and one with AGCI. What I didn't like about AGCII is the sudden drop in sound with a loud sound. My own voice was greatly lowered at times and also anyone speaking close to me would drop the sound. Since working with AGCII all day long, I have found that it is the best program. The sound is much smoother, clearer and I can hear better with it. I expect I will want to put AGCII in the #1 slot with an increase of the M levels and the volume control.

I find the difference between the BTE and the 1.2 is that I can increase the volume and not have a bad case of Tinnitus which had plagued me for so long whenever I tried to increase the volume. Also, at times, I have had neck pain with more volume. With the gain control filtering out loud sounds, I don't have either problem. When I turned up the volume with the 1.2, I got a gravely sound to the voices. The BTE sound is much smoother with increased volume. The BTE has a wider IDR. When the dynamic range is increased, there is more sound to digest. At the current time, I am not hearing as well in noise. It is a trade off. I get more sound and clearer sound but also there is more sound which, in some instances, can amount to noise. I think practice a noise program is probably necessary.

I tried the ALD earhook today. Since so many of you said you are using a phone adapter, I thought I should try it out with my phone to see how well it worked. The ear hook unscrews easy enough, but probably not fast enough to answer the phone quickly. However, the sound with it makes it well worth using. The sound quality was greatly improved. I would say better than the 1.2 was in the past without a phone adapter. I have an Ameriphone XL-40 and use the volume at half way. This was plenty for me and I also was using the AGCII program. I tried AGCI and found it a bit less superior. My ALD setting is at 50/50. The phone gets 50% of the sound and the mic gets 50% of the sound. It could be increased on one side, but I am content with the way that it is. Since I don't use the phone at work, it is not a concern for me. If I have to make a call where I have to talk for an extended period of time, I would definitely use the ALD earhook. I feel very comfortable now knowing that I can use it and it sounds good.