After Cindy B. received the scary diagnosis of Usher syndrome 2A at the age of 29, her world came crashing down. She realized that hearing loss from Usher syndrome (as well as decreased eyesight into blindness) would be her reality for the rest of her life. Luckily, after getting a cochlear implant, Cindy was able to regain her hearing, allowing her to activate a key sense and be an active participant in the world again.

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Woman with Usher syndrome post Cochlear Implant surgery“My hearing loss began at birth, having been born with moderate hearing loss, like my two siblings. At age 2, I was fitted with hearing aids, but by the time I was in middle school, I was profoundly deaf. I attended and graduated from Ida Public Schools, which had an excellent oral hearing-impaired program. At school, we were taught to listen and to use the hearing we had. I went to mainstream school, but always had the support of the teachers and staff of my hearing program, as well as my parents’ support. They encouraged my education and progression into becoming a productive member of society.

I was diagnosed with Usher syndrome 2A when I was 29 and attending Eastern Michigan University, while working full time as an accountant. It was an earth shattering diagnosis, and my world fell apart. To find out I may be blind one day, when I relied so much on lip reading, was devastating. I learned to take it one day at a time, since the disease was slow progressing.

 

When I was 43, I decided it was time to purchase new hearing aids. The hearing aid specialist showed me my audiogram, as I had not seen it since high school. He called it a ‘corner audiogram.’ I was shocked to see how little hearing I had left. He recommended I call my ear clinic to pursue a cochlear implant.

In February of 2007, I received a cochlear implant in my left ear. I had little idea of what to expect, as there were few stories on the internet at that time. On activation day, everyone sounded like Mickey Mouse, and I could not distinguish words yet. However, I heard my audiologist say the letter ‘s’ in her words, which was the first time I had ever heard that sound in my life! This began a fun journey of experiencing new and old sounds again.

Old sounds heard anew

I heard the turn signal in the car, and I recognized it from my school bus when I was very young, which made me smile. I heard the ATM beep, which surprised me because I had no idea it made sounds! Then I heard all the birds chirping and among them was a Mourning Dove. The Mourning Dove was the only bird I could hear as a child, and I had not realized I had stopped hearing it. What a beautiful sound! I so enjoyed sitting on the porch to listen to all the birds! There were also the not so fun sounds, such as potato chip bags crackling! Oh my goodness, I still do not like that sound…!

Some sounds sounded so different from what I was used to hearing. I would fight these sounds, thinking, ‘That’s not right!’ This was a key point in my hearing journey when I said to myself, ‘Okay, this is how it sounds now. I need to stop fighting this and accept it.’

My rehab journey

It was discouraging at first because I felt like I heard speech better with my old hearing aids. I listened to children’s books on CDs and tried to follow along in the written books. At first, I could not even follow along even with the book in front of me. It took a lot of effort to understand a few words. With each MAPping session, it seemed to get better and better. Finally, a couple of months after activation, I heard my first clear word. It was my then 5-year-old daughter saying, ‘Mama!’

I continued to understand speech more and more as the months passed. I had many ‘wow’ moments. I could hear each of my three cats purr. My daughter was playing basketball in the driveway as I sat on the porch listening to the birds; she would yell, ‘Mama, watch me!’ Even though she was quite a distance away, I heard her very clearly and was able to respond. That was a ‘wow’ moment!

woman with usher syndrome success with cochlear implantAfter several months of listening to children’s books, I moved up to adult audiobooks and their corresponding books. I played children’s audiobooks for my daughter in the car too, and gradually, I was able to understand those without the corresponding books. A couple of years after activation, I was able to understand adult audiobooks without following along in the printed books.

Throughout all of this, my speech became clearer. People were not struggling to understand me, and I understood them! Everyone stopped pounding on my arm to get my attention before speaking to me; that has to be one of the top reasons I love my cochlear implant! My self-confidence rose and I even started using the telephone for the first time in my life. I no longer shake with fear when I need to make a call. Now I know I will understand most of the call, especially when I call Cochlear Americas’ wonderful customer service!

In the meantime, my vision had progressively worsened; I could no longer see details or see faces clearly. I lost my ability to lip read by 2012, which forced me to rely on my cochlear implant more and more. I was and still am very grateful for my cochlear implant because I am still able to communicate and be a mom.

Bilateral, upgraded and enjoying new technology

Encouraged by one of my best friends who is hearing impaired, and whose brother is a bilateral cochlear implant recipient, I began pursuing a cochlear implant for my other ear through the University of Michigan Hearing Rehabilitation Center. They and Cochlear Americas worked together and quickly received approval from my medical insurance.

I really have no idea where I would be now without my cochlear implants to help me maintain my independence, in spite of being legally blind.

First, I upgraded my Freedom® Sound Processor on my left ear to a Kanso® Sound Processor. Wow, what an amazing little processor! I fell in love with it immediately; I love not having the weight on my ear for the first time since I was 2 years old! I love the CochlearTM True WirelesTM accessories and streaming directly to my Kanso. The TV Streamer is so great; the words come in so clearly. The Phone Clip connects to the Bluetooth® transmitter on my CD players, and the Mini Microphone is great for my tablet. I am the quietest person in my apartment complex, even though I may be the deafest resident here!

Being bilateral is awesome! I now have more of a sense of direction from where sounds are coming. This is extremely useful to someone with low vision, especially walking across roads or in parking lots. I can hear the cars coming and from which side! I can usually tell from which side a person is speaking to me and can turn in that direction to respond.

I am extremely grateful to Cochlear Americas, my doctors, my audiologists, and my medical insurances, as well as, the support of my family and friends for making this possible. I really have no idea where I would be now without my cochlear implants to help me maintain my independence, in spite of being legally blind. I am able to volunteer at one of the local nursing homes, where I listen and chat with some elderly women. This is something that was never an option for me with hearing aids. As my vision worsens, I am confident my cochlear implant hearing will only improve!”

If you are impacted by hearing loss from Usher syndrome, click here to find out if Cochlear Implants could help you.

If your child has hearing loss from Usher syndrome, visit IWantYouToHear.com to find out if Cochlear Implants could help them.

 

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Cara Lippitt
Cara Lippitt is the Public Relations Associate Manager at Cochlear Americas. She is responsible for consumer marketing social media and blog content. Cara is inspired by the stories of the recipients that she is able to tell and the incredible journeys they have taken. Cara was born and raised in Colorado and adores the mountains, snow and the world of musical theatre.