As Justin Bieber cancels the rest of his tour amidst complications with Ramsay Hunt syndrome, fans wonder what the condition is and what that means for the star. Here’s a closer look at Ramsay Hunt syndrome.
Pop superstar Justin Bieber showed fans his face partially paralyzed by a condition called Ramsay Hunt syndrome. The same virus that causes Ramsay Hunt syndrome — varicella-zoster virus (VZV) — is responsible for chicken pox and shingles.
Bieber told fans in a YouTube video that the virus had attacked “the nerve in my ear, facial nerves, and has caused my face to have paralysis. You can see this eye is not blinking. I can’t smile on this side of my face. This nostril will not move.”
What is Ramsay Hunt Syndrome?
Ramsay Hunt syndrome occurs when the VZV infects a nerve in the head near the inner ear — having chickenpox as a child or shingles as an adult can cause the virus to lay dormant in the body. Why the virus reactivates and produces the symptoms of Ramsay Hunt is unknown.
According to the Icahn School of Medicine at Mount Sinai in New York, symptoms may include a painful rash inside the ear canal or outside the ear, sometimes affecting the tongue or roof of the mouth. Due to the proximity to the inner ear, sufferers may experience vertigo (the sensation of dizziness or spinning) or tinnitus (ringing in the ear).
Ramsay Hunt syndrome can also lead to hearing loss on the affected side of the face. It can cause facial weakness, droop, or paralysis on the side of the face, as is the case with Bieber. That weakness may lead to difficulty in closing one eye, making facial expressions, and even eating.
Treatment consists of antiviral medications like acyclovir or valacyclovir and steroids like prednisone to reduce inflammation.
If damage to the nerve is severe, a sufferer may not fully recover but otherwise should heal within a few weeks. If treatment starts within three days once symptoms have started, chances of recovery are overall much better. Adults are more likely to be affected by the condition, but children who get it are likely to recover faster.
Bieber assures fans that he will get better and is doing “facial exercises to get my face back to normal.”
“It will go back to normal. It’s just time, and we don’t know how much time, but it’s going to be okay,” Bieber says in the video. “Obviously, my body’s telling me I gotta slow down. I hope you guys understand, and I’ll be using this time to just rest and relax and get back to 100%.”
The fact that Bieber sounds confident about his recovery indicates doctors caught the condition right away, but that isn’t always the case. In fact, before Bieber’s Instagram post announcing that he had it, the syndrome had been little known and is commonly misdiagnosed as Bell’s palsy — which also exhibits one-sided facial paralysis. Misdiagnosis means patients miss out on rapid treatment that could save them from life-changing symptoms.
33-year-old stage manager Matt Carney first came down with symptoms in 2017. He says the worst part was being unable to blink.
“I had to put drops in my eye every 20 minutes to stop it drying out and to manually blink by pulling my eyelid down with my fingers,” Carney says. “I was having to tape it closed at night to be able to sleep. Just walking outside, even on a still summer’s day, there was enough of a breeze to dry my eye out within seconds.”
Carney received an initial diagnosis of Bell’s palsy. By day four, he suffered a bout of vertigo and returned to the hospital, where he was finally diagnosed with Ramsay Hunt syndrome. But he was too late for the necessary antiviral drugs.
Charles Nduka, the consultant plastic surgeon for several hospitals in the UK, says that misdiagnosis is so common that it’s hard to get accurate data for the condition. The reported incidence of Bell’s palsy is around 20-30 cases per 100,000, and for Ramsay Hunt syndrome, it is about five cases per 100,000. Nduka estimates that there are about 25,000 new cases of sudden-onset facial palsy a year in the UK, and maybe a third of those will be left with chronic facial symptoms.
While the exact conditions in which the dormant virus will reactivate are unknown, Nduka says it is most common “when your immune system is down.”
“Patients who we see will have some preceding physical or emotional stress, such as cancer, chemotherapy, immunotherapy, moving house, or stress in their workplace.”
Nduka has suffered from Ramsay Hunt syndrome after working hard during the pandemic. He says, “I was giving a talk on facial palsy when my face started twitching, and I had this horrible sensation on the side of my tongue and an awful taste, which is one of the early symptoms — altered taste because the facial nerve also supplies the front part of the tongue. I knew what it was and was able to get treatment early on, and managed to abort the onset.” Nduka had another minor flare-up a year later but was again able to treat it early.
Carney still suffers from symptoms, including tinnitus, but considers himself lucky he was able to regain all of his movement. “It started to come back on its own, but then I realized that I had some strange movements and stiffness of the muscles.”
Carney says you probably wouldn’t notice that he’s had the condition now despite the remaining symptoms, but it’s been a few years to get to that point. “There’s the chance that if I’d had the antivirals early on, I might have avoided the paralysis altogether.”
While it’s a silver lining that Justin Bieber’s experience has enabled him to bring attention to the condition, Carney says it’s unfortunate that we’ve had to wait for someone like Bieber “to be able to bring it to people’s attention.”