She was in pain for years. A rare condition was to blame.

Jill Becher woke up 1 autumn greeting pinch what felt for illustration a bad sore throat. For a fewer days, she pushed nan symptom aside. 

But erstwhile it didn't fade, she went to urgent care. Doctors location recovered nary evident origin of nan pain. Two days later, nan symptom went distant — but a week later, it was back, and fiercer than ever. 

It was nan opening of what would go a sadistic cycle. For 3 years, Becher knowledgeable searing symptom successful her near ear, nether her lingua and down her throat. The symptom would flick connected and disconnected for illustration a ray switch, and nary 1 — not her superior attraction physician, not nan ear, chemoreceptor and pharynx expert she was referred to, not nan allergist aliases nan neurologist she saw — could make a diagnosis. 

Meanwhile, nan symptom only intensified, yet becoming "debilitating," Becher said. She struggled to eat aliases speak. Anything that progressive rubbing her face, moreover thing arsenic elemental arsenic brushing her teeth, "caused nan symptom to beryllium moreover much excruciating." Temperature changes hurt. The formerly progressive Becher recovered herself "bed-bound" and "very, very depressed" because of nan symptom and nan effect it was having connected her life. She said her matrimony and family life suffered, and she became "completely withdrawn" from nan world arsenic she searched for an answer. 

Finally, she was diagnosed pinch glossopharyngeal neuralgia, a uncommon syndrome that causes symptom successful nan throat, tongue, receptor and tonsils. It and different conditions successful nan neuralgia family are nicknamed nan "Suicide Disease," because immoderate group pinch nan information return their ain lives to flight nan pain. 

"No 1 could understand that type of pain," Becher told CBS News. "I don't moreover deliberation family members tin understand it, what it does to a personification and really it changes their life. ... It was a surviving hell." 

What is glossopharyngeal neuralgia? 

Glossopharyngeal neuralgia is an highly uncommon information that occurs successful betwixt 2 and 7 group per million, according to the website of nan Department of Neurological Surgery at nan UCSF Weill Institute for Neurosciences. It's caused erstwhile humor vessels compress nan glossopharyngeal nerve, which comes retired of nan encephalon and allows a personification to swallow, move their pharynx and consciousness sensation successful assemblage parts, including their lingua and tonsils. 

There's nary 1 origin for glossopharyngeal neuralgia, said Dr. MaryAnn Mays, a neurologist astatine nan Cleveland Clinic 
who was not progressive successful Becher's care. In immoderate cases, it tin beryllium caused by a tumor aliases different building connected nan brain. Other times, there's nary existent origin for nan condition. It's rarer than nan akin trigeminal neuralgia, and often takes a agelong clip for nan information to beryllium diagnosed, Mays said. It tin be misdiagnosed. 

Doctors often usage an MRI to corroborate nan beingness of nan compressed nerve. That's really Becher was yet diagnosed pinch nan condition. 

A sketch of nan cranial nerves, including nan glossopharyngeal nervus (lower right). Zhabska T. / Getty Images

Once diagnosed, nan information tin beryllium treated pinch medication. If that doesn't work, aliases if nan information progresses to nan constituent wherever nan symptom is debilitating, room is an option. 

Once she was yet diagnosed, 3 years aft first experiencing pain, Becher decided to effort nan surgical route. She underwent a microvascular decompression craniotomy, a encephalon room wherever a surgeon useful cautiously to move nan humor alloy pressing connected nan glossopharyngeal nerve. But it didn't work, and Becher woke up successful much agony than ever. 

"It was devastating," Becher said. "It besides caused further impairment, and moreover much pain, which was scary. I was hopeless, and thought I'd beryllium bed-bound permanently." 

A risky room pinch precocious rewards 

While recuperating, nan symptom became truthful terrible she went to nan emergency room of Morristown Medical Center. While there, she was treated by neurosurgeon Dr. Yaron Moshel, nan co-director of Atlantic Health Systems' Gerald J. Glasser Brain Tumor Center, who helped dainty Becher. After Moshel and different doctors astatine Morristown Medical Center learned much astir her condition, he decided nan champion solution was to do different surgery. 

This operation, conscionable 2 and a half months aft nan first surgery, would beryllium much fierce — and riskier. A damaged humor alloy tin origin a changeable aliases hemorrhage, but Becher was consenting to try. 

"When he was capable to show maine connected my scans wherever nan problem was and really he would spell astir fixing it, that was nan biggest release," Becher said. "It's a immense alleviation to person personification not only understand it but show it to you and opportunity 'You're not crazy. This is not successful your head. This is nan existent pain. This is wherever your symptom is coming from."

Jill Becher utilizing a walker astir 2 weeks aft surgery.  Jill Becher

Moshel and his squad discovered that Becher's vertebral artery, a awesome humor alloy that comes up from nan spine and feeds nan full brainstem, was twisted astir her glossopharyngeal nerve. With each of Becher's heartbeats, it was grinding against nan nerve, causing nan pain. Moshel had to cautiously move nan vessel, without causing immoderate harm to it aliases nan surrounding nerves and vessels. 

"This full abstraction we're moving successful is for illustration a centimeter (in area)," Moshel said. "It's tiny. It's really difficult." 

The alloy was moved, and padding was placed astir it truthful that it couldn't return to its original twisted position. Moshel said nan room should beryllium a imperishable fix. Becher said that erstwhile she woke up from nan operation, she was pain-free for nan first clip successful years. At first, she worried nan symptom would return for illustration it had aft her first cognition — but she soon realized it was "gone for good." 

"It was unbelievable, conscionable nan biggest weight disconnected my shoulders," said Becher. "It was a caller lease connected life." 

Becher underwent reside and beingness therapy to dress up for deficits caused by nan condition. Now, a twelvemonth aft nan surgery, she's "completely better," enjoying an progressive life pinch her family again, and looking guardant to walking to Portugal pinch a friend later successful 2024.

"It's almost a wholly caller life that I've started," Becher said. "For 3 years, my life was wholly taken from me. My life was wholly changed — and it changed correct back." 

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