My CI Story

My name is Heather Arnone. I am sixty-three years old and have been married for forty-two years. I have three children and four grandsons! I have enjoyed hearing with my left cochlear implant since March 2001, and my right cochlear implant since 2014.

I was born hearing, but as a preemie a two pounds, seven ounces. I lost my hearing due to streptomycin I was given at around 18 months of age. I was just starting to talk, saying words like “Dada, cookie, bye-bye.” But instead of talking more and more over time, I turned silent instead. I would press my ear to the TV to hear it. I was growing deaf in a hearing family.

I was born prematurely at 26 weeks in Bethlehem, Pennsylvania and required extensive medical intervention in order to survive. Although I passed my newborn hearing screening test, I was diagnosed with sensorineural hearing loss in both ears when I was seven years old. The doctors thought that the extracorporeal membrane oxygenation (ECMO) machine which I was put on shortly after my birth may have caused my hearing loss.

Recently, I was reading entries on the Advanced Bionics (AB) Facebook page. A wife was pleading for help for her husband, who was giving up on using his processor. He had no one to talk to and wasn’t prepared for the issues he was having. Someone mentioned to the woman that her husband should speak to a cochlear implant mentor to get ideas and maybe find some answers. The wife was totally unaware of mentors. She asked if they worked for AB and how she and her husband might find one in their area. This brings me to the subject of my blog today.

It might sound weird, but losing my hearing as a baby was one of the best things ever to happen to me. I see that now. From the moment my parents noticed I stopped responding to their voices, until the moment I was diagnosed two and a half years later, I observed the world with my eyes. I still do. Many times, my Mum has repeated the story: “They told me you were either incredibly deaf or incredibly stupid.” Forty years on, my Mum is still in disbelief that a medical professional would label a four-year-old boy in this way, but we have to remember this was in 1981. Attitudes have, fortunately, changed enormously.

It was a life-changing moment, hearing a doctor tell me that my little boy, barely 24 hours old, was probably deaf.

When I lost my hearing at age six and got cochlear implants, my parents often wondered what my future would be like, who I would become, and what achievements I would reach. They were told many things from professionals about how I might not reach certain milestones in the academic world, and about what type of relationships I might have. However, they were persistent in trying their best, and had faith in my future.

My progressive deafness started twenty years ago when I was eighteen. By the time I was in my thirties, I had profound deafness in both ears. I wore hearing aids in both ears, and they were turned up very loud. When I decided to go ahead with cochlear implantation at thirty-nine, I had a lot of questions, more than my hospital had time to answer. Thankfully, my AB Mentors answered some of them by email, and they were a lifeline for me during this time.

So much of my understanding of my cochlear implants relates to the brain. It’s also been the most useful way for me to explain my implants to other people. I talk about my implants a lot — to people who have never seen one before, to other people who have them, and to people who are aware of them, but aren’t quite sure what to think of them or how they work. To me, my implants are simply providing my brain with information that my ears are unable to provide. It’s up to my brain to make sense of everything.

My hearing journey began on a blistering cold day in January, 1995. That morning, when I awoke to a bizarre ringing sensation in my ears, it was easy to write the experience off to my being pregnant with twins and caring for my three-year-old son. Things went downhill after my twins were born. I started having trouble hearing the stove timer, the phone, and even my husband.

My hearing loss journey began when I was only one month of age and had a high fever of 105 degrees for three days. I was very fortunate to have survived this illness, but I was left with severe hearing loss in both ears. In the early 1950s, I received my very first hearing aid at age three and started attending a special oral school for children with severe hearing loss in Phoenix, Arizona.

Before having cochlear implant surgery, you may have questions about what to expect for the surgery, recovery, and initial activation of the cochlear implant. Hundreds of thousands of people have undergone the procedure all around the world, and it is natural to experience a wide range of emotions, including the anxiety that may accompany any medical procedure and the fear of the unknown. Surgery is a necessary, but brief, part of the process, and the more you know about cochlear implant surgery and recovery, the more comfortable you will be with the process. Here are some frequently asked questions about cochlear implant surgery and recovery.

Back in the late ’80s and early ’90s, cochlear implants were just beginning to become more widely known. I remember seeing on television an elderly couple who were deaf and blind. She was given an implant and heard her husband's voice for the first time. This was my first impression of cochlear implants.

I have been deaf since birth, but it wasn’t until the age of four that it was discovered. Thanks to the team of audiologists at the Policlinico Federico II in Naples, led by Dr. Auletta, I was diagnosed with severe bilateral sensorineural hearing loss. I was fit immediately with Phonak hearing aids and attended speech therapy for seven years.

I’m told that I’m one of the originals. In 1994, after a terrible auto accident, I was fighting to save my right leg. The doctors prescribed a particular medicine and told me there was a twenty percent chance that I would lose my hearing from using it. To a 19-year-old active college student, there was no choice at the time. But it turned out that I was indeed part of that twenty percent.

I was 30 years old and on a cruise when I first noticed a problem with my hearing. A creaking sound woke me up one night, and when I rolled onto my right side, I could no longer hear it. When I returned home, a hearing test confirmed a severe hearing loss in my left ear, which did not improve with treatment. A conventional hearing aid did make everything louder, but it did not improve clarity, and I still had to rely on my right ear, for the most part.

As a psychotherapist in private practice, listening is the most important part of my job. There are many different ways for me to listen to my patients—by watching their body language, seeing their facial expressions, and, of course, by hearing the words they speak.

My name is Priya Jones. I was born in Calcutta, India. When my parents adopted me, I moved to the United States of America when I was seventeen months old. I have bilateral severe to profound sensorineural hearing loss, and I wear two cochlear implants (CIs) to help me hear and understand speech. I also have craniofacial syndrome, which for me, means a cleft lip and palate, a bifold nose, and partial vision impairment in one eye.

When I was 21 and in college, I suffered a sports injury. As a part of the treatment, the school doctor gave me gentamicin, a drug that I found out later was ototoxic and can cause permanent hearing loss. At first, I noticed the ringing in my ears. But by the time my hearing was tested, I was diagnosed with bilateral sensorineural hearing loss that sloped down to 70 dB in the higher frequencies.

J.P. Giuliotti is an accomplished American actor who also happens to be a cochlear implant recipient. His most recent role was on HBO’s hit show Room 104, where his CI was prominently visible, making him one of the first representatives of CI recipients on popular television. He shares with us how hard work and persistence lead him to success, despite this perceived disability.

My name is Harriet Amos. This is my story as a profoundly deaf child journeying to adulthood in a hearing world. My parents began to realise I wasn’t hearing well when I was around the age of three. I remember my parents covering their mouths to see if I could hear, and I would easily become frustrated and angry.

I first discovered my hearing loss in Germany when I was serving in the U.S. Air Force and was selected for a special duty assignment for the National Emergency Airborne Command Post (NEACP). This assignment, however, required a few prerequisite evaluations, one of which was a hearing test. After shipping our household belongings to the States and preparing ourselves for leaving Germany in two weeks, I received notification that my orders had been canceled because I had failed my hearing test.

I’ve always had a deaf mother. When I was growing up, her hearing loss has defined our relationship, whether directly or indirectly. As a kid, it was confusing as to why other kids could talk to their parents whenever they wanted, but I had to fight over background noise or repeat myself multiple times, only to eventually be told that I should try repeating it later when there was no background noise.

My wife Carol has had hearing loss most of her life. She now uses a bimodal solution, with a cochlear implant in one ear and a hearing aid in the other. As with many families where hearing loss plays a big part of everyday life, our story was one of making do and getting by until we couldn’t any longer.

I received my first cochlear implant (CI) in 2013 in my left ear and in 2018 in my right ear. But I wish I had gotten them sooner. I learned that this is a feeling shared by most people with CIs. When I asked why they waited, they said it was because all the unknowns of a CI overwhelmed them when making this decision.

It was at a family gathering in 2010 when my daughter Robin realized that I was missing parts of the conversations. A hearing test shortly after concluded that I had a mild to moderate hearing loss. I ignored it for a few years as it wasn’t that bothersome. But now, after a lot of research, I highly regret that decision. I did end up getting hearing aids, and for a while, they helped.