​On May 1, 2025, members of UNC-Chapel Hill’s Health and Humanities: An Interdisciplinary Venue for Exploration (HHIVE) Lab had the opportunity to speak with Howard Stall about his experience living with Ramsay Hunt Syndrome. In this month’s newsletter, we’ll be highlighting Howard’s story, with a special focus on his diagnosis, treatment, and life with RHS.

 

Three years ago, Howard Stall’s life changed forever when he was diagnosed with Ramsay Hunt Syndrome (RHS). The exact date of Howard’s diagnosis is difficult to pinpoint, as it involved trial and error with a visit to the ER, physician referrals, discussions with family and friends, and internet research. Like so many with RHS, Howard’s diagnosis trajectory was highly uncertain.

 

Early on, physicians misinterpreted Howard’s symptoms, the primary one being facial paralysis, as signs of Bell’s palsy. Howard’s symptoms immediately prompted him to go to an emergency department in Savannah, GA, where he was at the time of his symptoms’ onset. Although he was misdiagnosed at that time, he was prescribed a 10-day course of oral steroids, as well as Valtrex. After that initial ER visit, Howard saw his primary care physician and a neurologist in Charlotte, NC. His initial hope that the facial paralysis might be temporary faded upon receiving a formal RHS diagnosis, a feeling he likened to a car accident or suddenly hitting a brick wall.

 

It wasn’t until a friend, who also happened to be an infectious disease specialist, referred Howard to the UNC Facial Nerve Center that he received comprehensive RHS treatment. Howard described how he felt looking at patients’ before-and-after photos online prior to his first appointment: “Wow, they actually get what this is, and there is some potential treatment option that’s available.” He went on to explain that in the clinic, “you’re surrounded by kinship; you’re like, oh wow, you guys actually get it because you have it.”

 

Ultimately, Howard received the care he needed from Dr. Matthew Miller, an ENT and facial plastic and reconstructive surgery specialist, and Dr. Miller’s patient care team. Notably, Dr. Miller and Carter Ballard, his medical assistant, also have lived experience with facial paralysis. The level of understanding members of Howard’s treatment team had allowed them to focus their attention on a treatment plan rather than grasping at straws for a diagnosis.

 

Howard eventually decided to have selective denervation surgery to alleviate his RHS symptoms, which Dr. Miller performed on September 30, 2024. The 4-hour surgery returned a smile to Howard’s face—literally. Around the time of his surgery, Howard’s mother was ill, and she passed away just days following, yet he noted, “I think getting my smile back helped me kind of push through . . . because it's like, ‘Oh, wow! My life is back.’ I could literally smile in the recovery room.”​​​​​​​​

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​​​​Smiling in the recovery room brought back a lot of emotions. Later, working with his therapist, Howard talked about the emotions he had “sandbagged” when he wasn’t able to smile or eat normally. Eating, brushing your teeth, and even kissing are all things that someone with RHS has to do differently. The feelings of loss—having something taken from you like your smile—and having it returned 3 years later was “cathartic,” Howard said.

 

He noted that before surgery, it was hard not to be self-conscious about his image and that he sometimes worried about people’s perception of him, particularly of his smile. Although he had a heightened perception of faces, he had to remind himself that other people without RHS were likely not paying as much attention to his face as he thought.

 

Despite the surgery alleviating many of his symptoms, Howard indicated that the biggest breakthrough came from the inner work he has accomplished. When providers didn’t find solutions initially, he turned to meditation and journaling, and he is now a proponent of therapy as well. His incorporation of these practices into his routine represents a significant change, as he believes life stressors may have contributed to the initial onset of the syndrome. Of his RHS journey, Howard stated, “It’s opened my eyes to me on the inside and, I think, a lot of the world as well.”

 

Howard doesn’t resent that providers didn’t have answers at first. He expressed that a rare condition like RHS is more likely to be misunderstood than a common one, but he still wishes they had dedicated more time to understanding the underlying cause of his symptoms in the ER. Howard’s message to physicians is not to have all the answers, as he knows that isn’t always possible, but to take time to do the research and not pass someone off when not all their symptoms are easily explainable.

 

Howard’s experience with RHS has led him to “love more openly and louder” and grow as a person. He acknowledges that not everyone with RHS is as fortunate as he has been. Despite the staggering cost, he didn’t owe anything out of pocket for his life-changing surgery because of excellent health insurance coverage. Individuals with RHS may not be able to afford surgery or may not have access to a specialized clinic, which is why raising awareness and building a community around RHS is so important. Perhaps the biggest takeaway from Howard’s interview is to “be gentle and have empathy.” It’s a reminder that everyone is fighting their own battles, even the ones we can’t see.

 

Editor’s Note: Dr. Miller directs the UNC Facial Nerve Center and is also on the board of RHSF. Please note that RHSF is not directly affiliated with or supported by the UNC Facial Nerve Center. In later issues of this newsletter, Dr. Miller will address some of the topics covered in this interview.

 

By Jenny Horton and Tara Penman, HHIVE