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Finding a second chance at life through surgical treatment for trigeminal neuralgia: Carol’s story

October 22, 2013

One morning in February 2012, Carol Lang awoke as usual at her home in Trenton, Florida, about 30 miles west of Gainesville. Except, something was off.

Her first movement to get out of bed was met by a jarring pain on the right side of her forehead that was unlike anything she had ever experienced. “It was like an electrical shock. Very painful. I thought I was having an aneurysm,” she says.

Carol’s husband took her to the emergency room, and she remained in the hospital four or five days as doctors were stumped over what was causing the legal secretary’s sharp and recurring pain. The pain was always in the same place - on the right side of her forehead and behind her right eye.

An MRI and CT scan of her head showed nothing structurally wrong – no clots or ballooning blood vessels. At one point, a small tumor was removed from a gland under her neck, but that turned out to have no impact on what Carol described as the worst pain she had ever experienced.

“I suffered with it for over a year,” says Carol, now 51 years old. “I had at least two episodes a week. I never knew when I was going to have them. It just seemed to get worse. The attacks lasted several minutes, where I would just scream and cry.”

Doctors put her on Neurontin, an anti-seizure medication often given for restless leg syndrome, and painkillers. But even prescription pain medications could not blunt the agony of a trigeminal neuralgia attack. “I felt like a hole had been burned into my forehead. The pain behind my eye was really bad. I would curl up into a ball and just scream until the episode was over. It was the most horrible experience I ever had.”

Carol could no longer go to work, she didn’t feel comfortable driving because of all the medications she was taking, and she missed all of her son’s high school baseball games last year. “I knew I couldn’t live with it.”

Through her own research online, Carol was led to a fuller understanding of this rare and debilitating affliction, and convinced herself that she was one of it’s victims. Also online, she came across the name of Dr. William A. Friedman, chairman of the Department of Neurosurgery at the University of Florida’s College of Medicine, and learned he was one of the nation’s leading practitioners of what inarguably is the most effective surgical procedure to treat trigeminal neuralgia.

Dr. Friedman has been treating trigeminal neuralgia patients at Shands Teaching Hospital in Gainesville for several years, and now is in the process of expanding this service to Orlando Health. He sees about 500 sufferers of this condition a year – about 200 of whom he operates on. Carol Lang became one of them after she sought a consult with him.

On March 8, 2013, Dr. Friedman performed the procedure called a “microvascular decompression” on the right side of Carol’s head. The surgery involves cutting through the skull behind the ear to access one of the trigeminal nerves. The nerves are responsible for sensations of pressure, temperature, and pain in the face and scalp. They also control the muscles involved in biting and chewing, though not those for facial expressions. After the three-branched nerve is exposed, a sponge-like or cottony material is placed between the nerve and an artery that is usually pressing on it, to cushion the nerve. For most patients, this solves the problem for good.

Carol is grateful that is the case for her, and now tells everyone who might be a candidate for the surgery about what it did for her.

“I have not had one episode since!?