I Realized I Had Ramsay Hunt Syndrome Because of Justin Bieber's Diagnosis

If he hadn't shared his health condition on Instagram, I would still be looking for answers.

Portrait of Carmen Cusido
Photo: Courtesy of Cusido

The symptoms began while I was on vacation in late April. I was eating dinner at a restaurant in Turks and Caicos when the difficulty swallowing hit; pieces of shrimp and coconut became lodged in my throat—even the water I tried to wash it down with shot up through my nose because I couldn't swallow it.

After two days of this, plus the added symptom of losing my voice, I sought help at a local urgent care. The doctors there weren't sure what I had—though they ruled out COVID-19 after I tested negative—and they sent me back to my hotel with prednisone for what they thought was laryngitis and dysphagia (trouble swallowing).

Though the prednisone started working on the inflammation in my throat and I was eventually able to start eating more tolerable, solid foods, other symptoms started popping up. Just days after my dysphagia, I noticed the left side of my face started drooping slightly and felt limp—it was facial paralysis. I also started feeling weakness and pain in my left shoulder, and experienced significant hearing loss in my left ear.

It was a nightmare that stumped even an ear, nose, and throat (ENT) specialist; internist; and neurologist, all of whom I saw immediately when I got home from vacation. I began a weeks-long journey of frequent doctor's visits, time-consuming physical exams, blood work, and expensive diagnostic scans to rule out a whole host of illnesses. My doctors and I were worried most about multiple sclerosis, stroke, Lyme disease, and diabetes—but I didn't have any of those.

The illness was obviously physically taxing, but it was also taking a toll on my mental health. I felt self-conscious about my facial paralysis at first, and was careful not to smile too wide so I wouldn't call attention to it. But the hardest and scariest part was that I was going through this health scare alone; both of my parents had died in the past few years and I had recently ended a seven-year relationship. While my friends and extended family provided emotional support, I still felt incredibly isolated.

Finding a Diagnosis in an Unexpected Place

Though many of my symptoms had cleared up by June, my most persistent symptoms—partial facial paralysis and significant hearing loss and ringing in my left ear—remained. But when Justin Bieber revealed his Ramsay Hunt syndrome diagnosis in early June, I became hopeful that I might finally have an answer for my own medical mystery.

As soon as Bieber shared his news on Instagram, friends began sending me a flurry of messages about how similar our conditions looked. His facial paralysis and mention of difficulty eating were what really piqued my interest—I saw in his single post the health issues that I had been dealing with for more than a month.

Surprisingly enough, my health care provider took note of Bieber's condition compared to my own, too. When I followed up with my family doctor's office to ask about the possibility of my own Ramsay Hunt syndrome diagnosis, they ordered special bloodwork to test for the varicella zoster virus—the virus that causes chickenpox, shingles, and Ramsay Hunt syndrome.

The blood test showed past exposure and infection by the varicella zoster virus, and my doctor was able to officially diagnose me with Ramsay Hunt syndrome—just like Bieber.

I'm now currently recovering from Ramsay Hunt syndrome, and though the process has been slow, it's also been hopeful. In addition to a few separate courses of prednisone to help tamp down inflammation, I've also used alternative treatments—like acupuncture with electrical stimulation, meditation, and facial and physical exercise—to help with my progress, with the OK from my medical team.

My symptoms also continue to improve: I still have some weakness in my left shoulder, I can actually lift it above my head now. My facial paralysis is almost gone, too, and I no longer feel self-conscious when I smile.

But I still have some difficulty hearing: I have a 30% deficit in hearing in my left ear at low volumes. I'm monitoring the situation with my ENT doctor, but if I still haven't regained my hearing entirely within the next month, my hearing loss may be considered permanent, and I could need a hearing aid.

Ultimately, my experience with Ramsay Hunt syndrome has taught me to doggedly advocate for myself—especially when there's no easy answer for your medical condition.

Carmen Cusido is a Cuban-American writer based in northern New Jersey. She is working on a memoir about grief and loss titled "Never Talk About Castro and Other Rules My Parents Taught Me."

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