Living most of her life with single-sided deafness (SSD), Stephanie was elated when she was identified as an Cochlear™ Osia® System candidate. After a lifetime of procedures and various insurance challenges, she finally received her sound processor and is now enjoying improved hearing and a better quality of life. Read more:
“I want to share my personal story about hearing loss and why it’s important to get the right care when it’s needed and have the insurance coverage to pay for it.
Living as a child with hearing loss
As a child I suffered many ear infections, so my mother agreed to have ear tubes put into my eardrums when I was age 5 or so. The tubes failed, fell out and tore away my right eardrum. From then on it took many years for the doctors to discover what happened. By age 10, I had my first reconstruction of the eardrum (which was unsuccessful). By age 18, I had a second unsuccessful reconstruction, hence, this whole time I’ve had hearing loss in my right ear.
Again, life goes on and I moved forward after the surgeries while coping daily with issues like not being able to get my ears wet, risking chronic infections. Needless to say, swimming was out and showering was always with caution. I accepted the fact that I only had hearing in my left-ear. Single-sided deafness is a problem. You can’t understand speech in noise and in other situations it’s hard to tell where sound is coming from. Background noise makes it impossible to understand anything.
In 2015, I suffered a bad infection of the mastoid so ended up having a radical mastoidectomy in addition to attempting another reconstruction of the eardrum. I felt good for a while, however, I still had very little hearing. Over the last few years, I started suffering major irritation of the inner ear and now had almost no hearing in the right ear as it continued getting worse.
It was finally time to see a specialist
In September 2022, I decided it was time to go to a specialist. I explained to him that the last couple of years I’ve had very intense irritation in the ear, almost feeling like I had critters in it! I was fed up at this point. When I saw my physician, he knew right away something needed to be done especially after a CT scan showed more difficulties. He gave me an option that was never given to me before along with the scary ear canal closure — a bone conduction solution, which is a proven, FDA-approved solution for single-sided deafness. I knew of them but now, at age 38, I realized I was never in all my years of treatments offered any type of hearing aid, let alone an implant.
I felt relieved! Even though the treatment plan with a Osia System involved surgery, I finally felt there was a solution with hope. The doctor explained that he was going to remove my eardrum and everything behind the canal to close the ear canal permanently. I felt scared. I wondered what it was going to feel like. I had all this fear of the unknown, but still hopeful and relieved because he was going to do the implant.
This surgery combined with an implant was offering me the best chance for a normal life without pain and with getting my hearing back. The surgery was scheduled, I was ready to go and, to my great surprise and disappointment, my doctor told me that my insurance denied coverage for the hearing implant.
A shocking discovery that saved my life
As part of my initial implant preparation and surgical preparidness, my doctor had to remove a very dangerous cholesteatoma, which was hidden on the CT scan. it had completely invaded my inner ear and was already beginning to reach my brain. My doctor had no way of knowing how serious it was until he was in there. ‘This surgery saved my life.’
The denial of my insurance coverage for the Osia System forced a delay in my first surgery, when the serious cholesteatoma was found. The doctor said further delay could have been life threatening had I waited to do it in the future (as I was given the option since the CT scan did not detect it) with a possible insurance change option when it would have been open enrollment in June 2023. This still would have been a huge out-of-pocket cost as well. Not to mention more time for the silent cholesteatoma to grow deeper in my brain, potentially resulting in meningitis.
When I found out the Osia System surgery could finally happen, we thought, ‘Oh my gosh what an amazing gift!’
At long last, I had a solution
It was a long road to travel that eventually led me to my Osia 2 Sound Processor, but it was absolutely worth it. In December of last year, I received my Osia 2 Sound Processor.
Since initially receiving my sound processor, things have changed in so many ways with simple, daily activities. I realize now there were situations that I really thought were no big deal. For example, I was totally unaware of hearing my own footsteps or the sound of dropping my wallet in my purse. It’s coming to light how ‘abnormal’ my behavior was as I tried to cope, fill in the blanks, bluff and struggle to get through the day.
I look back and reflect on different sounds that I had missed or conversations I had misinterpreted due to the lack of my hearing. I was often portrayed as rude for those who did not know my hearing problem. The word ‘huh’ was a normal part of my vocabulary and people who know me realized I said that a lot! I don’t feel embarrassed any more from asking people to repeat or missing parts of conversation.
A few nights ago, I went out to a restaurant with my family. It was an outdoor setting with a bunch of people. It was very loud – sports bar type loud. I sat down with most people to the right of me, a few to the left and in that moment, I had a profound moment of joy, I heard everything! I not only heard but understood conversations from each part of the table. I engaged in the conversations on each side of the table. I had never done that before. In fact, I always had to make sure everyone was to the left of me. My family and friends knew that and would automatically make it happen. These moments of realization are ones I will cherish forever.
The benefits of a bone conduction solution
The Osia Sound Processor did not stop at just amazing me and wowing me at being able to hear. As mentioned in the beginning of my article, I have suffered my entire life with the hole in my eardrum with many failed repairs and major infections any time liquid (water, etc.) entered my ear.
As you can imagine when swimming or even something as simple as showering, I had always adapted to keep water from getting into my ear. When showering I knew exactly how to wash my hair and face without water getting into my ear.
I am now going into my third month of the activation and have just started to force myself to wash my hair without anxiety. Now, those simple activities come naturally to me without thinking about how I have to maneuver. It feels so weird and surreal at the same time. Many might wonder why I talk about this silly routine of taking a shower. It affected me my whole life and little by little, I am starting to let go of that anxious feeling.
A new quality of life
My entire life to this point, swimming was just out of the question. I can barely swim because of it and always had to float or wade in shallow water. My goal is to swim and just relax without the fear of infection in my ears.
My life has forever changed in so many ways. I am appreciating the morning sounds of birds, sprinklers that maintain the grass and enjoying amazing conversations with my children and family. These are now moments I cherish and do not take for granted.
The moral of the story is ‘do not give up.’ Fight for what you deserve. It does not have to end with a denial from insurance coverage. It is sad that being denied simply because of age gives no consideration to the patient’s health, ability to work and quality of life.
I have been deaf in my right ear my whole life and was never offered an implant before the age of 21, when it could have helped improve my hearing and quality of life. But it’s more than fighting and not giving up. We need insurance providers to understand what happens to a person’s health, livelihood, well-being, if we don’t receive proper medical care. We need better hearing health care along the way to offer children and adults what is needed.
I was lucky I didn’t give up; I looked for resources and found them. But resources aren’t always available, we have to all work hard to get insurance providers to understand why they need to cover implants for people of all ages. Providers must realize there’s a human being attached to the name on the insurance form.”
After receiving a denial due to coverage criteria specifications with her insurance company, Stephanie was able to eventually obtain her Osia System through the assistance of a non-profit organization – Jacob’s Ride1. She wishes to extend her deepest gratitude with this blog to the organization and the individuals that helped her in her hearing journey.
If you have been living with single-sided deafness and want to learn if the Osia System may help you, contact us today!
2- © 2019-2020 JACOB’S RIDE
- In the US, the Osia system is cleared for children 12 years and older. In Canada, the Osia system is approved for children 5 years of age and older.
