Personal Stories

A Very Good Day

When the World Begins to Fade

Imagine a world where phantom smells fill the air, and life’s melodies gradually fade. This was Gary’s reality when we first sensed that something was amiss. His initial encounter with an Ear, Nose, and Throat (ENT) specialist left us with a hazy explanation of probable sinus infections and age-related hearing loss, but we knew there was more to it. Little did we know that our search for answers would take us on a two-hour drive to meet Dr. Garb, a remarkable and compassionate ENT who would eventually change our lives.

Dr. Garb’s genuine interest in our story led him to order an audiogram, providing us with a baseline measurement of Gary’s hearing capabilities. However, it still fell short of answering why this was happening. It wasn’t until much later that we had a name for his diagnosis, Sensorineural Hearing Loss. The culprit? Something called hemosiderin was slowly extinguishing the function of Gary’s vestibulocochlear nerve, the vital link between his brain and inner ear responsible for sound transmission and balance.

Is it Hearing Aid Time?

December 2014 marked the first audiogram showing a significant decline, with only 30% of Gary’s hearing remaining. Television was becoming arduous without closed-captioning, and even going to the movies was a gamble. Gary was resorting to lip reading during conversations, desperately trying to piece together fragmented words. His frustration reached its peak with cell phones, transforming what should have been simple communication into an exercise in futility. Yet, the most unfortunate aspect of his hearing loss journey was the overwhelming feeling of isolation. Picture being in a room full of people, surrounded by laughter and conversation, yet unable to fully engage. Regrettably, our prior experiences with other family members’ hearing aids had been disappointing. We even joked that Gary’s mother could only hear better by talking directly to the hearing aids hidden in her purse. It was a cycle that led us back to our second ENT specialist time and again. During one visit, he recommended a trip to the hearing aid center. And so, two weeks ago, we decided to give it a chance, curious about what they might offer.

Meeting the Audiologist

To our surprise, the initial visit was nothing short of impressive. Our audiologist had looked into Superficial Siderosis, understood the prognosis, and the damage it wrought. She spared no sugarcoating, explaining that hearing aids could not restore perfect hearing as Gary’s condition would continue to deteriorate. However, with the advancements in research on nerve-related hearing loss, she assured us of an acceptable hearing aid solution.

Enter Resounds LiNX2, a remarkable addition to the latest generation of intelligent hearing aids. This technological marvel seamlessly pairs with your cell phone through a user-friendly app, offering astonishing results. And though it’s still early days, we can already bid farewell to closed-captioning. No longer must we strain to speak face to face for understanding. The joyous revelation that “You don’t need to talk so loud” dances in our ears. With renewed hope, we eagerly anticipate our next trip to the movies, ready to embrace the magical world of sound once more.

Join us on this rollercoaster journey as we navigate the complexities of Sensorineural Hearing Loss, where challenges and triumphs intertwine, leading us toward a brighter tomorrow.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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