Trigeminal neuralgia is known as the “suicide disease,” and Ben Weiskopff knows why.
“It was the worst pain I’ve ever imagined,” he says.
Ben, 61, has worked at UPMC Wellsboro as director of surgery for 39 years – his entire career. He first felt the sharp, intense, shocking pain down the right side of his face in February 2023. It didn’t last a long time but was intense. He experienced it shampooing his hair in the shower when he touched a certain spot on his forehead.
“It was like someone taking a hot knife and putting a hot electrical wire to it,” Ben says now. “The worst pain I’ve ever imagined.”
Ben did some research on his own in addition to scheduling an appointment with his primary care physician (PCP). Ben remembered learning about trigeminal neuralgia and thought that might be what he had. His PCP ordered an MRI, which was completed at UPMC Wellsboro.
What is Trigeminal Neuralgia?
Trigeminal neuralgia is a disorder related to the trigeminal nerve that is marked by episodes of severe pain in the face that originate from the trigeminal nerve. The trigeminal nerve is one set of cranial nerves in the head. It provides sensation to the face. One trigeminal nerve runs to the right side of the face, and one to the left side. Trigeminal neuralgia usually affects one side of the face.
About one in 15,000 people suffer from trigeminal neuralgia. Because it is often misdiagnosed, the actual number may be much higher. It is more frequent in people older than 50 and more common in women than in men.
Ben’s pain made riding his motorcycle nearly impossible.
“To put on my helmet caused excruciating pain,” he says, “and the wind while I was riding would often trigger the pain.” It affected another of Ben’s favorite pastimes: hunting. Even putting on his knit hat or pulling on a T-shirt could set off the pain.
Anti-seizure medicines are often used to control nerve pain, so they are often prescribed for trigeminal neuralgia. Ben’s PCP prescribed an anti-seizure medication called Tegretol®, which did not provide the relief Ben needed. The PCP next prescribed Trileptal®, another anti-seizure medication. This medicine helped dull Ben’s pain, but it was still severe.
“It would hurt so bad, my right eye would water,” Ben says. “I struggled to put contacts in. Even to make eye contact with someone was hard because my eye would water and I would have spasms of pain.”
The Path to Relief
Ben was referred to Georgios Zenonos, MD, director of the UPMC Cranial Nerve Disorders Program. Dr. Zenonos ordered a more specialized MRI (CISS sequences) for Ben, which was done at UPMC Altoona. This MRI confirmed that the cause for his pain was an artery pushing on his trigeminal nerve.
With cases of typical trigeminal neuralgia, the first line treatment typically is medication. If medication is effective and there are no side effects, then patients can stay with medication as a long-term therapy. However, the medications frequently stop working over a period of time, which is what happened to Ben. He had significant pain even with high doses of two medications.
The Solution
Dr. Zenonos recommended that Ben undergo microvascular decompression surgery, or MVD. In MVD, the surgeon creates a small opening (slightly over an inch) behind the ear to expose the trigeminal nerve and the blood vessel that is exerting pressure on the nerve. When the blood vessel is found, the surgeon places a cushion between the nerve and the blood vessel to relieve the pressure.
Ben’s surgery was done on Dec. 19, 2023, at UPMC Presbyterian. He stayed overnight and went home the next day. His son, 33, accompanied him. Ben says he was very well treated during his short stay in Pittsburgh.
“The team was amazing as far as prepping, education, and what to expect. There were no surprises,” he says.
And now? “Not even a glimmer” of pain, says Ben. “Think of the worst pain ever, and the next day it’s completely gone.”
Ben’s recovery was easy, too. He says there was no pain from the surgical site. He had a lifting restriction for two weeks afterwards, when he could not lift anything heavier than 10 pounds.
“I could pretty much do my normal activities,” he says. He had one follow-up visit with Dr. Zenonos three weeks after surgery, and that was it.
“It’s a night-and-day difference,” Ben says. “Like a miracle.”
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Bennett’s treatment and results may not be representative of all similar cases.