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DefBird's CI Stories


Many people visit DefBird's Nest in search of information about cochlear implants. DefBird decided to make her own story and those of other CI users available in hope that it would be some help to people making a decision about having a CI for themselves or their child. Your comments will be welcomed and appreciated.

Table of Contents

Adult Cochlear Implant Stories

 DefBird's Story  Toya's Story  Betty's Story  Margo's Story

Kid's Cochlear Implant Stories

  Kennedy's Story   JD's Story and Links



DefBird's Own CI Story

I can remember telling my mother and other family members that I didn't hear them from the time I was about 3 years old. No one believed me. I must have been a bright child. I could read before I was 3 years old. In fact, I can't remember not being able to read. My mother said I talked in sentences way before I was a year old and was walking by 8 months of age. I guess I was just able to compensate in some way for my hearing loss. It was apparently not profound.

I finally gave up telling people I didn't hear them. I just got on with my life.

When I was 20 years old and attending Nursing School, I decided I had to talk about my hearing loss with the director of the program. We were in our first clinical rotation and I could not hear the blood pressures. I tried to hide this but, I realized the importance of the information and decided I had to say something.

Guess what? She didn't believe me! She said maybe I just wasn't doing it right and we would work on it. I finally convinced her I really could not hear the blood pressures and she sent me to an ear specialist. This is the first audiology exam I can remember having. I had a greater than 90 dB loss in my right ear and between 75-90 dB loss in my left ear. In other words, I was deaf!

I was shocked and so was everyone else. I knew I did not hear well, but, had no idea the loss was of this magnitude. To my amazement, I was allowed to complete the nursing program. I passed the TX licensure exam and became an LVN. I worked in the nursing field for the next 14 years.

I was not able to wear hearing aids and never learned to sign. I just depended on speechreading and notes if communication broke down completely. I managed very well.

This went on for over 30 years, marriage, two children, nursing school. university, medical technology school, all accomplished with just speechreading. I had friends and I enjoyed my life. The only thing I really missed was music.

I had been working in the medical technology  field for almost 10 years when I began to be interested in getting a cochlear implant. I had known about them for 5 years or so, but, didn't believe they would work for me. I got an invitation to a CI information forum in Dallas and decided to go. I met some people who had CIs. It was obvious they could hear with them. I discovered they did NOT  have any extra holes in their heads, no antennae sticking up, no plug interfaces, all things that had worried me.

This was in June of 1989. It took me until October of 1989 to get all the testing and insurance pre-certification out of the way. On October 25th, 1989, I had my CI surgery. I can't remember much in the way of pain. I healed rapidly and my hair grew back in fast. It was no big deal.

I had my first mapping on December 6, 1989. Now, that was a big deal. I COULD HEAR! I was totally amazed. I had hoped it would work, but, until I actually heard with the CI, I still was afraid it would not be for me.

Right from the first day, I could understand some words and phrases with audition only. I could not believe it! The second day of mapping culminated in a visit to a friend's house for a small celebration. While we were there, she started to play some hymns for me on their piano. I felt so wonderful, I was just bursting with joy. I wanted to sing. She said why not! She played and we sang for over 2 hours. We were exhausted but I didn't want to stop. I was in glory. One of my favorite hymns that we sang was Amazing Grace, How Sweet the Sound. Think of it, HOW SWEET THE SOUND!

This was right in the middle of the Christmas season. I had heard no Christmas music for over 30 years. Just think what God had in store for me! I can't begin to tell you what I experienced. When I heard my first Messiah and the alto sang the part about the ears of the deaf unstopped, I just wanted to jump up and shout they have been!

But, It gets better. I was in the delivery room for the birth of both my granddaughters, but, I heard Sarah's first cry! If that was the only thing I ever heard, it would have been worth it.

Every day is like a new birth for me. There is not a day passes that I do not feel thankful to God for restoring my hearing in this miraculous way. It had been so long since I had heard that I had forgotten what it was to hear. I didn't know what it meant to be deaf till I could hear again. It was as if God had opened a door for me and turned on a light in a room I didn't even realize was closed and dark.

Now, I can converse easily with nearly everyone. I can use the phone in the usual way. I love driving around listening to my van radio. And, I go to many many live concerts. I enjoy orchestra, piano, choral, music! If it is music, I enjoy it, even my husband's Stones stuff!

How Sweet the Sound!

Click Amazing Grace and the Midi will play it for you.

Tommie G. Wells
N 22 with Spectra Processor
DefBird@SBCGlobal.Net

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Toya's Story

My Cochlear Implant

First I'd like to say that my cochlear implant brought about one of the greatest changes in my life.  It is a decision I will never regret and will always be thankful that it was possible for me to be implanted.

My sister is 6 years older than me.  When her hearing loss was discovered (at age 3), the doctor assumed that it was caused by the rubella measles she had at age 1.  There was no other history of hearing loss in our family.  However, when I was 7, the school nurse discovered that I, too, had a hearing loss.  Since it was not as severe as my sister's, the doctors concluded that her loss had been worsened, but not caused by, the rubella. Our loss was progressive.

My sister received a cochlear implant 11 years ago.  She was the 3rd person in Amarillo to have the procedure.It was very exciting since she had young children.  She was soon able to hear their voices for the first time!

My hearing loss was slower to progress, and of course, knowing that some day, I could have a cochlear implant eased the anxiety of losing my hearing.

At the time that my sister had her implant, the criteria stated that a person had to have been hearing at some time and should have no more than 10 percent of hearing at the time of the surgery.  Knowing this, I didn't get my hearing checked regularly, figuring I'd wait until my hearing was almost gone and then go for an evaluation.  As a result, when I did go, I had less than 5 percent.

By that time, the guidelines had been raised considerably, so a person could have as much as 35-40 percent of hearing left.  Oh well, what matters is that I was eligible for an implant.

With the evaluations, and insurance approvals, my waiting period was about 5 months.  On May 13th, 1998, I got my surgery.  (I was 37 years old)  To me, the surgery wasn't painful really, just a bit uncomfortable.  But knowing what was ahead, I knew it was worth it.  On June 3rd, I went in for my hook-up and first mapping.

WOW, what a great experience when they turned me on for the first time.  (and every time since).  The first sound was kind of choppy, but within minutes it smoothed out and sounded great to me.  My husband and kids were present and the first thing I remember hearing was their voices asking me 'Can you hear us'?  Great question with a great answer.  YES, I CAN HEAR YOU.

At home, my kids made every noise they could think of, so I could experience all the sounds they thought I had missed.  Many sounds I couldn't identify at first.  When quite some time has passed without much hearing, a person DOES have to relearn sounds.  There are still sounds I don't readily identify, but it makes each day an experience.  The most recent sound I needed help with was wind chimes.  I heard them (it was dark outside), and asked what kind of bird sang after dark.  My brother turned on the porch light to show me.  We had a good laugh.

I was lucky and had a very good, quick success with my implant and in using my processors.  My sister didn't have as quick a success.  It took her quite a bit longer to use the phone for example.  But, mostly because she had an earlier model processor.  Many of my C.I. friends have had to work harder at learning to use the phone and at understanding words than I did.  But I don't know ONE C.I. user that would change a thing.  We all agree that the cochlear implant was right for us.

One last story I'd like to tell.  My audiologist insists that this is a story that should be told.   Shortly after I was 'plugged in' and wearing my processor, my husband and I sat on the porch to watch the sunset and then the night sky.  We held hands and talked for hours.  When we stood up to go inside, my husband said to me, "It's SO nice to talk like this again".

Toya Unger
N 24 with ESprint(Body worn)and ESprit (BTE type)Processors.
ungers@hcnews.com

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Betty's Story

 At the age of 54 I had a bout with spinal meningitis.  It was April 10, 1992,  just before my 55th birthday.  I feel very fortunate that the only deficit I experienced was a total loss of hearing.  I was profoundly deaf.  I was devastated.  I really didn't know what to do or where to go.

The health professionals explained the cochlear implant to me.  They informed me that I would be a perfect candidate for a cochlear implant.

December 12, 1992, I had the implant surgery, which went well, four weeks later I was activated.  This was a very special day for.  I was able to hear sounds again.

I had a very good speech teacher I went to classes three times a week for six  weeks.

My cochlear implant changed my life.  I am enjoying it so much.  I am able to  talk on the phone, enjoy music.  I feel I made the right decision with the help of my best friend, my husband Don.  He has been very supportive.

Betty Barrett
N 22 with Spectra Processor
Donbjb@aol.com

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Margo's Story

I was discovered to be deaf in my left ear when I was 2 years old after an automobile accident. At that time I was also diagnosed with a minor progressive hearing loss in the right ear. I am adopted and no known family history was available to find out if hearing loss was an inherited issue.

I was fitted with my first hearing aide in my right ear when I was 21 years old. When aided I understood 96% so it was still considered a minor hearing loss. When I was 25 years old in 1977, I got a virus that affected my right ear. Over a 2 month period I lost the remaining hearing in that ear and became totally deaf. I learned lipreading, and sign language to help me cope with deafness. I got a hearing ear dog to help me with sounds around the home and to help alert me to the needs of my children.

In December of 1988 I heard about the multi-channel cochlear implants at a cochlear implant forum and became very curious about implants. Prior to that I was aware of the single channel implant but had not really been impressed with results of that. My husband and I looked into implants as a tool to help me communicate with my family primarily. Although I was interested in environmental sounds, the main focus was to be able to understand and communicate more effectively with my four children and husband. Anything else would be frosting on the cake.

The biggest encouragement as far as cochlear implants came from the implantees that I communicated with in early 1989. I decided to go to University of Michigan because they had a large implant department and were involved in cochlear implant research and I felt that they would be on "the cutting edge" of cochlear implants. I had surgery in May of 1989 and was activated in June 1989 to Cochlear Corporation's WSP Nucleus 22.

I had a fairly uneventful recovery from surgery. I was half bald from the large incision that was made and a numb area above the incision but those were very minor problems. The adjustment phase after activation took about 3 months for voices to normalize but I think I probably kept getting better and better for about a year. Most of my rehabilitation was done by my family and friends and especially my children. My daughter was learning to read at the time and both of us would work on children's books on tape-me for the listening and Sarah for the reading. My children were wonderful about pointing out sounds for me to help me learn to recognize sounds. Over the course of a year, I learned to recognize many new sounds, was able to develop telephone skills, and became very pleased with my newfound "hearing" abilities. I rejoiced at each new skill or sound that I succeeded at acquiring.

Over the next 9 years, I upgraded each time to the new speech processors as they became available, so that I would be able to increase my abilities with my cochlear implant. I went from the WSP to the MSP and then to the Spectra.

Then in late 1997 and again in the spring of 1998, my abilities with my cochlear implant started going downhill as electrodes started failing. My audiologist tried all sorts of map adjustments to help me but by summer of 1998, it was getting harder and harder for me to communicate with people and I had difficulty recognizing simple environmental sounds and it was recommended that I have reimplant surgery.

After a 3 month wait for insurance approval, I had reimplant surgery to Cochlear Corporation's N24 in November of 1998. Although there are other equally good devices now on the market, since I had done so well with Cochlear Corporation's implant in the past, I decided to stay with Cochlear Corporation and the new N24 and its many new capabilities.

Surgery this time was even easier than the first time as the incision was much smaller, which made for a much easier healing time. I still have a numb area near the site of the incision but part of that area is from the first surgery and it really is a minor issue. The hardest part was the month long wait for activation. I needed to do such intense lipreading due to being totally deaf. Activation to the N24 in December went extremely well and I was amazed at how well I heard with the new implant even from the first day. I expected that I would need a month to adjust to the new implant as in the past it often took 3-4 weeks to adjust to a new upgraded speech processor. I was delighted when voices normalized within a week!

I was once again able to use the phone, communicate with people around me and understand many environmental sounds. I'm hearing sounds that I've never heard before with the old device, which is quite amazing. I enjoy the flexibility of this new device which allows me to change settings depending on the environment and having the multiple maps. My family is truly delighted once again not to feel frustrated when communicating with me. I continue to rejoice in the sounds of my environment. I relish listening to all kinds of music.

I am still hearing impaired with this new implant but my abilities in communication have improved tremendously with just 6 months of use. Although I never really felt that I "took for granted" my old cochlear implant, I find myself getting even more joy out of the sounds in my life now, as I realize how very precious they are. This is especially due to those several months prior to being reimplanted when my world became more and more narrow as my communication skills kept decreasing and my reliance on my cochlear implant dwindled. It was very hard.

I continue to look forward with my new cochlear implant as the technology continues to improve. There are new speech processing strategies in the near future.

So, to those cochlear implantees that are in the process of looking into reimplantation, do not despair! Granted, no one wants their implant to fail, but, with the newer surgical techniques making recovery easier and the new technology of the cochlear implants, it is a very positive step to make if it is needed.

Margo Klug
N 24 with ESprint (body worn) Processor
dklug@vbisd.org

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