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Sharing Stories

Gay’s Story 

I lost my hearing in late 2004. I had a cold and earache in late October and just thought it was a common illness.  I went to a primary care doctor who treated me for an ear infection, but I had also started to experience some hearing loss in my left ear.  I went to an ear doctor and was tested and treated for Inner Ear Disease with Prednizone but that did not seem to help and I began experiencing hearing loss in the right ear as well.  

In November, my son, Kevin, and his wife, Kristen, came for Thanksgiving from Boston; they, as well as my husband and daughter, Kristin, and her husband, P.K., thought I was acting very strange.  So, the day after Thanksgiving, they took me to the Scott Air Force Base Emergency Room, since we are retired military and the Base is close to our home.  They did some initial tests, but thought that I needed a neurologist.  Since they did not have a neurologist on duty, they transferred me to St. Elizabeth’s Hospital in Belleville, IL.  They administered several tests, even West Nile Virus, but could not come up with a definite cause of my illness.  Since some of my tests showed signs of a virus, they treated me for a virus, but I still was not making much progress.  Consequently, after 10 days, they decided to transfer me to Barnes-Jewish Hospital in St. Louis, MO.  I really don't remember much, if anything, from my stay at St. Elizabeth's or my son and daughter-in-law visiting because I had an allergic reaction to the Prednizone.  

During the next 7 days at Barnes-Jewish, they ran many tests (spinal tap, EEG, EKG, PET Scan, MRI, CAT Scan, etc.), but could not find specifically what was wrong.  However, I started getting better even with no medications, probably partially due to the Prednizone getting out of my system after 17 days.  I was released two weeks before Christmas after having been hospitalized for 21 days, but had profound hearing loss in both ears.  No exact cause was ever found!  

By January, my ear doctor referred me to a hearing specialist, Dr. Jacques A. Herzog, at the Center for Hearing and Balance Disorders in St. Louis, MO.   Although my hearing loss was profound, I decided to try two hearing aids to see how well I could hear with them.  I thought it was a big improvement (although did not realize how much I was missing). When Dr. Herzog said to me, “you are qualified for a Cochlear Implant” I thought he was selling me a bill of goods!  He said you would never hear as well with hearing aids as you would with a Cochlear Implant.  I thought it unbelievable and very costly and "Star Wars" like in the presentation.  So, we thought it over.  

During this time, my husband was an unbelievable supporter, taking off work to be with me.  He knows as much about the Cochlear Implant as a recipient...without hearing with one.  We had lots of humorous times as well. He would try to say words to me at the hospital and see if I heard them correctly. One day he said "banana split" and I repeated correctly "banana split" so it became our code word.  When he called on the phone, he would say "banana split" to clue me in as to who he was. One time, I thought for sure he was my son on the phone and it was him...yelling banana split over and over again!  

The phone was a bugaboo. I longed to hear my son's own voice on the phone. I have always been a "talker," but now not a "hearer" which was very frustrating. And, the first time anyone said to me,  "So, you are deaf" I thought, “oh...could that be right?”  I never have been deaf.

I was a good lip reader and that helped a lot. Without hearing aids, my hearing was at the 40-45% level; with aids, it was at 60-65% level and I am happy to say that with the implant my level is at 90-95%!!!  It is amazing, amazing, amazing!!! 

So, after 4 months using hearing aids, my children visited again from Boston with an article they cut out of a magazine where a lady in her 30s told of her implant experience and I cried when reading it.  It was me, only she was 20 years younger than me but the same type of experiences happened to her.  So, I decided to go for it. I wanted it done soon and I was on my way.  The surgery was May 3, 2005, and I was connected to sound on May 27, 2005.  I thought it was a simple surgery. I went in at 6:30 a.m. and was awake and in my room at 9:45 a.m.  My head was wrapped in a padded form to protect the incisions but, what bothered me most was the form pulling my hair like when you were little and your mother tugged on the rubber bands for ponytails or pigtails. The incisions didn't hurt, but my head ached all over.  And, I had thought maybe I would have a huge shaved area on my head, but due to a new surgical procedure, only a small area was affected. 

Dr. Herzog did so well. He has been doing implants in St. Louis since the 1980s.  I slept little that night, my head was smarting, but early the next morning, his assistant came in and removed the padding and I felt great! Of  course, here I was with this gunk, whatever they use, including dried blood I think, stuck all over my head. One of my good friends said did I tell my doctor how anal I was about my hair? No, but we laughed. Then a nurse told my husband to get some peroxide to remove it at home because we weren't supposed to wash the head for week so no infections.  So, bless my husband. Here he comes home with a giant bottle and proceeds to wipe the sticky stuff out of my hair with paper towels!  Lordy!  He wouldn’t wash my hair in the sink laying sideways so that lasted about two days and I went to my hairdresser. We held plastic and a towel over the incisions and lay sideways and she washed the rest of my scalp. Nothing has ever felt so good!  I recommend a retired hairdresser or someone to clean up the recipient after surgery before you leave the hospital. Yes, my hair was a big concern to me, I admit. Before surgery, I had gone to my daughter’s hair stylist in St. Louis to determine how to wear my hair with an implant; my hair was short and we came up with a plan.  So, eventually, my hair grew. I have a good way to style it now and of course, now I don't care so much that my processor shows, gives my an opportunity to share the Cochlear experience with others.  

As you can imagine...hearing is the greatest. And in four or five months, I had forgotten a lot of the little sounds you hear everyday and don't realize it.  When my outstanding audiologist, Kathy Rehwinkel, hooked me up the first time and I got sound...I was expecting a period of adjustment...like my husband's voice not sounding real to me and so on.  But he sounded just like before I lost my hearing! It was the same "Wonderful Wally" as before and sound was great, so "hearable," so exciting to be part of real life again! On the way home that day, I was amazed by the sound of car engines in line next to us, to sirens, to traffic noises...it was great! At my 2nd tweaking, Kathy introduced the telecoil to my processor and it was wonderful; to hear on the phone, to really hear the name of the caller...I was thrilled!!  Each tweaking appointment led to many new sounds, and I was so thrilled to be a part of the Cochlear experience.  I could hear my grandsons in their car seats in my backseat; I could hear the news on TV; I could hear my neighbor yell across the cul-de-sac and I could become a real part of society again! 

It has changed my life immeasurably. I love it! You can change batteries in a minute or less and you are hearing the wonderful sounds of the world in no time.  I can't imagine anyone not wanting to do this. It gives you your life back in no time at all. I was lucky, and with some assistance of my doctor, most was paid for by my insurance company.  I am so proud to be a Cochlear Implant recipient and hope to encourage others to "go for the gold"! It is indeed a real WINNER!


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Resources What is a cochlear implant?  What does insurance typically cover?  What are the ongoing costs?  Connect to our Resources page to view the only online clearinghouse of up-to-date cochlear implant information. CLICK HERE FOR RESOURCES
Recycling Have cochlear implant equipment or batteries that you can't use?  Could you use recycled equipment?  Connect to our Trash to Treasure page to learn about  your options. RECYCLE HERE
Reassurance Do you feel alone?  Do you want to communicate with people who understand?  Connect to our Community page, where cochlear-implant recipients and their families share stories and experiences. JOIN OUR COMMUNITY HERE
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