Jill Becher woke up one fall morning with what felt like a severe sore throat. For a few days, she put the pain aside.
But when it didn’t subside, she went to the emergency room. Doctors found no obvious cause for the pain. Two days later the pain went away, but a week later it returned, and more intense than ever.
It was the start of what would become a brutal cycle. For three years, Becher felt burning pain in his left ear, under his tongue and in his throat. The pain would turn on and off like a light switch, and no one – not her primary care doctor, not the ear, nose, and throat doctor she had been referred to, not the allergist or neurologist she had consulted – could not make a diagnosis.
During that time, the pain only intensified, eventually becoming “debilitating,” Becher said. She had trouble eating or speaking. Anything that involved touching his face, even something as simple as brushing his teeth, “made the pain even more excruciating.” Temperature changes hurt. The once-active Becher found herself “bedridden” and “very, very depressed” due to the pain and the impact it was having on her life. She said her marriage and family life suffered and she became “completely withdrawn” from the world as she searched for an answer.
Eventually, she was diagnosed with glossopharyngeal neuralgia, a rare syndrome that causes pain in the throat, tongue, ears and tonsils. This and other conditions in the neuralgia family are nicknamed the “suicidal disease” because some sufferers commit suicide to escape the pain.
“No one could understand this type of pain,” Becher told CBS News. “I don’t even think family members can understand what it does to a person and how it changes their life. … It was hell.”
What is glossopharyngeal neuralgia?
Glossopharyngeal neuralgia is an extremely rare condition that occurs in two to seven people per million, according to the UCSF Weill Neuroscience Institute Department of Neurological Surgery website. This happens when blood vessels compress the glossopharyngeal nerve, which exits the brain and allows a person to swallow, move the throat, and feel sensations in parts of the body, including the tongue and tonsils.
There is no single cause of glossopharyngeal neuralgia, said Dr. MaryAnn Mays, a neurologist at the Cleveland Clinic.
who was not involved in Becher’s care. In some cases, it may be caused by a tumor or other brain structure. Other times, there is no real cause for this illness. It is rarer than similar trigeminal neuralgiaand it often takes a long time for the disease to be diagnosed, Mays said. This can be misdiagnosed.
Doctors often use an MRI to confirm the presence of the compressed nerve. This is how Becher was ultimately diagnosed with this disease.
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Once diagnosed, the disease can be treated with medication. If this doesn’t work or the disease progresses to the point that the pain becomes debilitating, surgery is an option.
Once the diagnosis was finally made, three years after feeling his first pain, Becher decided to try the surgical route. She underwent a microvascular decompression craniotomy, a brain surgery in which a surgeon carefully works to move the blood vessel pressing on the glossopharyngeal nerve. But it didn’t work and Becher woke up more distressed than ever.
“It was devastating,” Becher said. “It also caused more impairment and even more pain, which was scary. I was desperate and thought I would be bedridden forever.”
A risky and very profitable operation
During her recovery, the pain became so severe that she went to the emergency room at Morristown Medical Center. While there, she was treated by neurosurgeon Dr. Yaron Moshel, co-director of the Gerald J. Glasser Brain Tumor Center at Atlantic Health Systems, who helped treat Becher. After Moshel and other doctors at Morristown Medical Center learned more about his condition, he decided the best course of action was to proceed with another surgery.
This operation, performed only two and a half months after the first surgery, would be more aggressive – and riskier. A damaged blood vessel can cause a stroke or hemorrhage, but Becher was willing to try.
“When he was able to show me on my scans where the problem was and how he was going to fix it, that was the biggest news,” Becher said. “It’s a huge relief to not only have someone who understands it, but to show it to you and say, ‘You’re not crazy. It’s not in your head. This is the real pain. That’s where your pain comes from.”
Jill Becher
Moshel and his team discovered that Becher’s vertebral artery, a major blood vessel that runs from the spine and supplies the entire brainstem, was twisted around his glossopharyngeal nerve. With each beat of Becher’s heart, it grinded against the nerve, causing pain. Moshel had to move the vessel carefully, without causing damage to it or the surrounding nerves and vessels.
“The whole space we work in is about one centimeter (in area),” Moshel said. “It’s tiny. It’s really difficult.”
The ship was moved and padding was placed around it so that it could not return to its original twisted position. Moshel said the operation should be a permanent solution. Becher said that when she woke up from the surgery, she felt no pain for the first time in years. At first, she was worried that the pain would return like it did after her first operation, but she soon realized that it was “gone for good.”
“It was amazing, it took the biggest weight off of me,” Becher said. “It was a new life.”
Becher underwent speech therapy and physical therapy to compensate for the deficits caused by the disease. Today, a year after surgery, she is “completely better”, enjoying an active life with her family again and looking forward to traveling to Portugal with a friend later in 2024.
“It’s almost a whole new life that I’ve started,” Becher said. “For three years, my life was completely taken away from me. My life was completely changed – and it changed right away.”
