Trigeminal Neuralgia:  A Personal Narrative
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Fran's Experience

The Beginning

In the spring of 1993, Fran, a sixty-year old woman, awoke just before dawn to the most excruciating pain she had ever felt. The pain initially generated from the top of her head and could be described as a frying sensation. Within a few hours, it had moved to the area around her right eye. She contacted her family physician and upon examination, he told her he thought she had trigeminal neuralgia, a disorder of the fifth cranial nerve. Fran's attacks involved the upper branch of the trigeminal nerve, the ophthalmic branch. Fran was given a prescription for carbamazepine (Tegretol), an anti-convulsant that slows the function of the nerve. She was referred to a neurosurgeon.

The neurosurgeon told Fran that one possible solution was to have a nerve clipped at the base of the brain stem. An alternative would be to continue on the Tegretol. Since the Tegretol had been providing some relief, Fran chose this option and the neurosurgeon referred her back to her family physician to continue treatment on medication.

Fran's family physician was interested in determining the cause of her trigeminal neuralgia. She had recently had extensive dental work and he felt that might have been involved. Fran went to her dentist who determined that her teeth were fine and there were no complications from her dental work. Over the course of a year, she also visited an endodontist, had x-rays checked by an oral surgeon, and was examined by a facial dentist. All agreed that her teeth were not the cause of her pain.

Fran's attacks, which felt like a lightning flash in her right temple, eye, and forehead, were increasing in frequency and intensity. If she touched the right side of her face or head, it could trigger an attack. She wanted to explore all her treatment options, so her family physician referred her to another neurosurgeon at a local university medical center.

This neurosurgeon doubled Fran's dosage of Tegritol, but told her that this would be the maximum dosage she could take. This doctor also offered her the option of having the nerve clipped, but warned her that the procedure may not successfully alleviate the pain. In addition, there was the possibility that her eye could become numb, leading to possible scratching of the cornea if she were to get something in her eye. Although eager to end the pain, she was hesitant to commit to any type of surgery that might leave her with other problems. Fran reluctantly decided to stay on medication. Her family physician added a prescription for Clonazepam to be used in conjunction with the Tegretol.

On the Track of a Solution

Fran felt that her situation was hopeless. Within six months of her visit to the second neurosurgeon, Fran's attacks had progressed to the point where she was limiting her diet to liquids, was unable to drive, and rarely left her house. Sunlight, wind, brushing her teeth, or chewing could trigger attacks. Even though she had been assured that her condition was not life threatening, the attacks were becoming so severe she wondered how she could continue to survive them.

A visit to the hospital for an unrelated illness proved to be Fran's lucky day. Fran encountered another patient who inquired about the severe head pain she was obviously experiencing. Fran explained her symptoms, expecting the woman to be sympathetic to her "migraine" headaches. To Fran's surprise, the woman understood about trigeminal neuralgia. This woman knew a man who had suffered from trigeminal neuralgia and was now free from pain. She gave Fran the man's phone number and for the first time since that morning in 1993, Fran felt that her situation might have a positive solution.

Fran contacted this man, who lived in Virginia, and found out that he had visited a neurosurgeon in Richmond. This neurosurgeon, Dr. Singh Sanhi, had given him an injection of glycerol which had proven successful. This man gave Fran the name of two other people who had trigeminal neuralgia and had sought treatment from Dr. Sanhi. Both had had a procedure called microvascular decompression that had proven successful for them.

Fran felt encouraged, but wondered if it was practical to obtain treatment out-of-state. If she needed emergency treatment with this condition, help would be hours away. As Fran debated what to do, her condition continued to deteriorate. During a two-week period, her pain had become so severe she stopped eating, could not touch her face, or brush her teeth. She rarely got out of bed. Fran's husband felt that something had to be done immediately and called to make an appointment for her to visit Dr. Sahni. He explained her condition and was given an appointment for the next day.

Fran's Treatment

Fran remembers very little about her first visit to this doctor. Since she was from out-of-state, Fran was admitted to the hospital upon leaving his office and was scheduled to receive a glycerol injection the next day. Dr. Sanhi explained to Fran's family that this procedure might end her pain. If not, it would possibly alleviate it enough to allow her to regain her strength for a more invasive procedure - microvascular decompression. He said that depending on the cause of the trigeminal neuralgia and the type of treatment previously received, microvascular decompression might not be an option for everyone. His recommendation for Fran was that if the glycerol injection did not work, she was a good candidate for microvascular decompression.

For two weeks after receiving the injection, Fran was free from the horrible pain that had ruled her life for the last four years and she was elated. Her joy was to be short-lived however. The attacks began again--quick and far apart at first; then becoming more intense.

Fran decided to have the microvascular decompression surgery. In Fran's case, two blood vessels were wrapped around the nerve. Blood would pulsate through the blood vessels causing them to bump against the nerve. Eventually, where the pulsating blood vessels made contact with the nerve, the insulation around the nerve wore away. With microvascular decompression, the neurosurgeon removed the blood vessels from the nerve and used a teflon pad to protect the nerve from the blood vessels.

Fran awoke the morning after the surgery free of pain. Her family was pleasantly surprised to find her sitting up in her hospital bed eating bacon and eggs for breakfast. In three days, she was on her way home.

Fran has been pain free from trigeminal neuralgia since April 1997. She also has not experienced any complications from the surgery. Although she felt like she lost several years out of her life and knows the pain could return, she is grateful that she has been able to resume the life she enjoyed prior to the trigeminal neuralgia.

Disclaimer - The author is not a medical professional and the information in this presentation is not intended to substitute for, or suggest appropriate medical treatment.

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