Trigeminal Neuralgia Awareness
CHELMSFORD -- It was on a trip to Las Vegas six years ago that the searing pain suddenly hit Stan Sosnicki.
“It started with just a jolt, in the corner of my eye, while washing my face in the shower,” said Sosnicki, 58, of Chelmsford.
As the September 2012 trip with his partner, Kay Roberts, went on, the pain “shocks,” as Sosnicki calls them, came with increasing frequency. Every time he touched his lip, rubbed his nose or took a bite of food, he was met with more pain.
“It was like touching a live wire,” Sosnicki said.
Through his own research, Sosnicki figured out he likely had trigeminal neuralgia, a nerve disorder of the face. A doctor confirmed the diagnosis upon his return to Massachusetts.
Trigeminal neuralgia, abbreviated as TN, affects the fifth cranial or trigeminal nerve, associated with facial sensation and chewing muscles. It is often called the “suicide disease” because the intense pain it causes is believed to be among the worst a person can experience. There is no cure, but medications and surgery can provide some relief.
In honor of International Trigeminal Neuralgia Awareness Day on Oct. 7 and October being Facial Pain Awareness Month, Sosnicki hopes to contribute to a better understanding of this often misunderstood disorder.
“I think it’s important that people are just aware that this condition actually exists,” Sosnicki said. “So many people are misdiagnosed for years and years.”
He said he hopes sharing his story will help others who are undiagnosed find answers and cause medical professionals to be more empathetic when presented with someone who might be suffering from the “horrific pain” of TN, instead of viewing and treating them as drug seekers looking for a fix.
Up until Sosnicki was struck with TN, he’d lived a healthy life with few issues. The West Warwick, Rhode Island, native served in the U.S. Air Force in his 20s and then went into the public-health profession. He’s served as Concord’s assistant public-health director for the last 25 years.
Sosnicki didn’t have any head injuries that could have led to TN, nor does he have any of the disorders frequently found with it, such as multiple sclerosis.
At the point he first saw a doctor for TN six years ago, he was experiencing 50 to 100 pain shocks a day. He was first placed on Trileptal, an anti-seizure medication, which had a number of bad side effects. He later switched doctors and was put on the nerve-pain medication Lyrica and Baclofen, a muscle relaxant.
Until this past summer, Sosnicki would go through periodic flare-ups where he would experience 200 to 300 pain shocks a day for a month or longer. Then, in July, it got much worse.
“These were like Taser shocks in my face,” he said. “This year, somehow, the button got stuck, and it wouldn’t stop.”
Sosnicki said it felt like a fireball that would start in his palate, rise up through his nose and come out through his right eye. It was so intense, it would stop him in his tracks, he said.
In August, it continued to worsen.
“One night I woke up, about 3 o’clock in the morning, and it was like a wasp stinging the back of my eye, 60 to 80 times an hour,” Sosnicki said, his voice wavering as he recalled the pain.
Another night, he experienced three straight hours of feeling like his eyelid was under a sewing machine, each second bringing another painful prick of the needle. If he put his tongue on the roof of his mouth in the course of normal swallowing, the pain “would blast from my eyelids all the way up to my forehead,” he said.
At the emergency room, Sosnicki screamed in pain for two hours before he was seen.
“I was being treated like I had a stubbed toe, when I was probably in the most excruciating pain of my life,” he said.
In between these incidents, he had seen renowned neurosurgeon Dr. Bruce Cook at New England Neurological Associates in Lowell. Sosnicki underwent a Fast Imaging Employing Steady-state Acquisition (FIESTA) magnetic resonance imaging (MRI) test that showed an artery crossing over his trigeminal nerve -- a possible reason for his TN. Cook scheduled Sosnicki’s microvascular decompression surgery -- a procedure to relieve the compression on the nerve -- for Aug. 31 at Lowell General Hospital.
In the weeks before the surgery, Sosnicki was on 25 to 30 pills a day, including steroids and painkillers in addition to his other medications. He organized them in a daily pill box, “just going from one square to the next” until it was finally time.
“I don’t know if it was out of desperation or blind faith, but I wasn’t worried about the surgery,” Sosnicki said. “I was more afraid of what was happening to me.”
The surgery went as well as it possibly could. Through an incision in the back of his head and a small hole in his skull, the artery was moved and padded with Teflon to protect the nerve.
For Sosnicki, the relief was immediate. He’s down to four pills a day, and can bite into food without searing pain. He’s also able to blow his nose for the first time in six years.
“It gave me my life back,” he said.
It’s not a cure, however. Sosnicki said he still feels some pain while washing his face, so he’s proceeding cautiously. It’s also not forever -- he may need additional procedures in the future.
But in the meantime, Sosnicki is trying to regain as much normalcy as he can. He returns to work on Monday after being out on medical leave since mid-August. He said he’s also looking forward to taking Roberts on leaf peeping road trips to the Berkshires and Vermont on their Can-Am Spyder Roadster that has sat in their garage for far too long.
Follow Alana Melanson at facebook.com/alana.lowellsun or on Twitter @alanamelanson.