One morning when Chet rolled out of bed his world started spinning and started experiencing hearing loss. After 9 long years, he was finally given answers to this sudden hearing loss and health issues in the form of an extremely rare autoimmune disease. Consulting with hearing health professionals identified him as a cochlear implant candidate and he moved forward with the procedure to build a better future for himself. Read Chet’s story below:
“My name is Chet and I have been an employee with Cochlear for three years. I am one-year Bimodality implanted wearing the Cochlear™ Nucleus® 8 Sound Processor on my right ear and a ReSound Nexia™1 on my left ear. I was promoted to an Upgrade Solution Specialist in November of 2023 and was previously a Hear Always Technician from July 2022 to November 2023 originally hired as a Device Support Specialist in 2021. I have loved every moment at Cochlear and can’t wait to see what the future holds for me now as a recipient.
I wanted to share my hearing journey with my fellow coworkers, recipients and candidates. It has been a very tough road, but I knew deep down I would eventually find relief and I am so proud to work for the company who gave me my hearing back.
Sudden and scary hearing loss
My hearing loss began in 2011; I lived alone and worked as a customer service representative at Best Buy. One day I woke up to get ready for work and as soon as my feet hit the floor, my world seemed to have flipped upside down, the room was spinning and I couldn’t stand up. Panicked about what was happening, I was able to dial 911 and was taken to the hospital. MRI and CT scans all came back negative. Eventually I was released with a referral to an ear, nose and throat (ENT) doctor in the Denver area. I had to wait a while to see the ENT and continued to have vertigo spells over the next few weeks.
After finally being able to see my ENT he diagnosed me with unilateral Meniere’s disease in my left ear. We did a course of steroids which seemed to work. Over the next six years I did not have many hearing issues, but every now and then I would have bad vertigo episodes. Unaffordable insurance kept me from doing any sort of treatment for about five years. Once I had insurance, I tried navigating the worsening vertigo which left me nearly bed-ridden most days. Vertigo spells would last upwards of 24-36 hours and nothing was working. Every time I had a vertigo spell, I would lose a bit of hearing along with it.
My doctor and I were discussing surgical options in 2019 when my right ear began having some hearing loss. This immediately stopped the surgical discussions due to complications it would cause since I was now diagnosed with bilateral Meniere’s disease, I was also no longer tolerating oral steroids. We began treatment of steroid injections into the middle ear which was extremely painful. For nearly 2 years every other month I was doing these injections.
When the vertigo still was not going away, and my hearing progressively worsening, my ENT decided to do some more testing and some blood work. These tests, especially the eye tracking test, concluded that I had some sort of autoimmune disorder. So, I began seeing a rheumatologist, I now had two ENTs and two Rheumatologists working as a team to try and figure out what was going on. In early 2020, we landed on a diagnosis of bilateral inner ear autoimmune disease secondary to rheumatoid arthritis. This is a very rare disease that mimics the symptoms of Meniere’s disease and affects 1% of people with hearing loss; or about 15 out of 100,000 people with hearing loss.
At the time we were discussing treatment options and I began taking some immunosuppressants. I immediately started to feel less dizziness and vertigo, the tinnitus and hearing loss was still there but at least I was functional and able to work again. This helped for a few months. Then in March of 2020 we decided to start infusions of Remicade® because I wasn’t getting the most out of the drugs I was taking. Being put on two powerful immunosuppressant medications at the same time as the COVID outbreak. My doctors suggested I take medical leave from work since I was now at high-risk. Regardless, the Remicade was working, as it is today, I have been almost totally vertigo free for 4 years while doing monthly infusions.
A new opportunity at a career and a hearing loss solution
Fast forward a year, I began looking for a new job, one that was hybrid so I can continue treatment and work. One day browsing the web I landed on Cochlear’s website just gaining information should I need an implant later in life at this time I was told I most likely would not need one for ten years or more, I was still curious. I ended up in the careers page and applied for several positions. Who better to work for than a company that understands and literally manages hearing loss. In short, I was then hired on the Device Support team in September of 2021. At this time, I had still around 85%-word recognition.
After almost a year on the team, I started experiencing extreme hearing fluctuations from 60% to 5% or less word recognition. It was to the point I could no longer work on the phones anymore and facilitated customers strictly using chat and email for a couple months. I had always been in customer service and enjoyed working with people. As you can imagine, this transition was isolating and stressful. In need of a change, I put in a transfer request for a department that was not customer-facing around July of 2022.
I landed in the Hear Always team, and I couldn’t have chosen a better group to join. The operations side of the company was fascinating to learn. There is so much that goes on behind the scenes it really made me appreciate the process. Things were going great; my hearing was stabilizing even though I was still struggling with my hearing loss and the use of high-powered hearing aids.
In March of 2023, my insurance changed and it was time to find a new audiologist and ENT. The week before my first appointment, I had a significant drop in my right ear. This caused some major stress in what seemed to already be the most stressful time in my life. My hearing was not coming back like it normally would. I went to meet my audiologist who, the moment she spoke to me, recognized my struggles. She could tell how hard things were weighing on me. After telling her my story and that previous doctors would not approve of a cochlear implant due to wanting to preserve what little natural hearing I had left, she decided to cancel her next two appointments and turned what was supposed to be just a meeting to establish care into a cochlear implant evaluation. I can’t express how wonderful it was to have someone listen, someone understand and advocate for me on the first time meeting me.
That same day I was qualified for a unilateral cochlear implant on my right ear. The next step was meeting my ENT, who turned out to also be one of the kindest and most understanding individuals I had ever met. I was nervous he would tell me the same thing my previous doctors did; that my disease is so rare, we don’t know how well a cochlear implant would work, that preserving my little natural hearing was the most important thing. He caught me by surprise and said, ‘This choice is yours; I will back you whichever way you decide.’
I decided to do it. I booked my surgery for 5 months later due to needing another surgery and lining everything up with my infusions.
Cochlear implant activation
As the days lead up to the surgery date, I began getting more and more nervous of my choice to go through with it. Mostly because music and concerts play a big role in my life. It was something I was afraid I would never be able to do or enjoy again. Ultimately, I knew my daily quality of life was more important.
I had surgery on August 1, 2023. Waking up from surgery was tough for me; I wasn’t in any pain, but the tinnitus was so extreme, without the ability to mask it with a hearing aid. Over the next two weeks healing went better than expected and I was able to be activated sooner than anticipated.
I brought my father with me to my activation appointment, something I normally would have done alone but he wanted to experience it. Although, he has preconceived notions. He, like many others, expected me to hear and understand words immediately and he was ready to record my reaction. But I knew not to expect such high results right away.
Once my sound processor was activated, everything sounded strange but this did not disappoint me. I understood that I would have to perform daily hearing exercises, rehab and wear my processor for 8 hours or more a day to gradually improve my hearing. People sounded like Alvin and the Chipmunks for months, but I could tell certain sounds were getting better, less muffled and high-pitched. I preferred to wear my sound processor more than not because it drowned out the tinnitus.
At the three-month follow-up from activation, I was not expecting the results I received. I went into the sound booth expecting 20-30%-word recognition. I came out of the booth and my audiologist had a huge smile on her face and gave me my results and a high five. I had scored 97%-word recognition unaided. Before surgery we concluded that even getting to 40% would mean the surgery was a success. This was amazing and I knew I could get back to the life I left behind.
Embracing my passion to help people again
I started applying for sales positions within Cochlear eager to help people like me. It warmed my heart knowing I could help people going through what I went through. This brought me to the Recipient Solutions team with Upgrade Solutions, a team I had already admired because of the help I received in my own hearing journey. Shout out to Jessica B., Bethany W., Emily C. and of course Davin C.. Thank you all for directing me to the right path and helping me achieve my ultimate goal of gaining my hearing back and joining the team I couldn’t have gotten here without you.
Last June, being 10 months activated, I decided to take a leap of faith and go to a concert. With some advice from Emily, a fellow recipient and Engagement Manager at Cochlear, I chose a show at the Lake Dillon Amphitheater. I went in expecting the worst and had my support system with me ready to leave if it didn’t go well. But it did go well. In fact, it was the best I had heard music in nearly a decade. I was enjoying music again, I was dancing and singing along to the music! This nearly brought me to tears. It was the perfect music, venue and company for my first time back to my favorite hobby. This was the event that confirmed I had made the right choice.
Today I am now exactly one year implanted. A decision that was not just scary, but terrifying. Had I not seen my audiologist, or had she not been as empathetic as she is I would not have gained this amount of joy back in my life. I can’t even describe how amazing it is for someone hard of hearing to be heard.
Things fell into place at exactly the right time. I couldn’t be more proud of myself and the struggles I overcame. I couldn’t be happier with the decisions I made the last year and a half that lead me to where I am now, and I can’t express the gratitude I have to be working for the company that gave me and so many others our quality of life back. I could go on for days thanking the support system I have, the company I work for and the joy it is to help people just like myself.
I hope this small look into my own hearing journey can inspire others to begin their own.”
If an autoimmune disease has resulted in hearing loss for you, a cochlear implant may be able to help! Find the nearest hearing health professional for an evaluation today!
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- For compatibility information and devices, visit cochlear.com/compatibility and resound.com/compatibility.
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