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LOS ANGELES (February 18, 2002) - Universally acknowledged as the most painful affliction known to adult men and women, trigeminal neuralgia (or severe facial pain) is often misdiagnosed and affects thousands of Americans every year - many of whom do not know that help is available. Until 1990, relatively little was known about this debilitating disorder, and until recently, treatment options were limited and largely ineffective. Now, however, thanks to a highly specialized, minimally invasive type of skull base surgery known as Endoscopic Vascular Decompression, sufferers can get immediate relief.
According to Hrayr K. Shahinian, M.D., Director of Cedars-Sinai Medical Center's Skull Base Institute, Trigeminal Neuralgia is a disabling disorder of the fifth cranial (trigeminal) nerve. Pressure on this nerve can cause episodes of intense, stabbing, electric shock-like pain in the face. "The pain we are talking about is excruciating - extremely intense, extremely severe," says Dr. Shahinian. "The shock of it can actually cause a sufferer's head to snap back, or it can immobilize the individual. The pain attacks viciously and without warning and left untreated, tends to worsen over time."
This severe facial pain is caused when a blood vessel is in contact with the trigeminal nerve inside the head and is applying pressure to the nerve. Relieving that pressure is a delicate, time-consuming surgical procedure that can take up to four hours. During the procedure, surgeons meticulously separate the nerve and blood vessel, and then insert a Teflon disk between them. Once that pressure has been relieved, patients often report immediate and complete relief from the pain that had become a part of their lives.
Juanita Caldwell, 75, of Birmingham, AL, knows first-hand how debilitating the pain can be. She suffered with the disorder for 15 years. As it steadily worsened over the years, she became unable to eat or even to talk at times. "Anytime my tongue would touch my teeth, the pain would be unbearable," she recalls. "And it wasn't just sometimes. It was 24 hours a day. It became so bad that my husband would screen all my telephone calls. He would tell me who was on the line and I would shake my head no if the pain was too bad for me to talk. Tears would drop from my eyes, it was so bad."
Like many people with trigeminal neuralgia, Caldwell was first diagnosed with TMJ disorder, and for 15 years she struggled with one treatment method after another, all to no avail. Then in 1998, she went to a specialist and was diagnosed with trigeminal neuralgia. But she was deeply concerned about how he proposed to treat it. "He wanted to 'clip' my nerve," she says. "I asked him what the results of that could be and he said I would probably drool."
Caldwell decided to keep looking for other treatment options. By this time, her husband had passed away, and she was on her own. One day as she was walking through the living room, she happened to turn on the television -- a rarity for her -- and a health program was on. "There was a 73-year-old woman on the show explaining how she had been successfully treated for trigeminal through a minimally invasive surgical procedure," she remembers.
The next day Caldwell got on the phone and called the television station, asking for the name of the physician on the program who had performed the procedure. She was given Dr. Shahinian's name and phone number in Los Angeles and called him immediately.
A woman in the doctor's office answered on the first ring and after Caldwell had explained her situation, the woman asked if she would like to come for a consultation. "No," said Caldwell emphatically. "I don't want to come for a consult. I want to come for the operation. I've been through so much, and I'll do anything to get relief from this pain."
A few days later, Caldwell was in Los Angeles, where she was seen by Dr. Shahinian, and her surgery was scheduled for two days later. Dr. Shahinian explained, after reviewing the results of her MRI and MRA that the blood vessels on the left side of her face were actually wrapped around her fifth trigeminal nerve. He would untangle the vessels and insert two Teflon disks between the blood vessels and the nerve, entering through a tiny hole just behind her ear and at the base of her skull.
The surgery was on a Wednesday morning, and when Caldwell woke up that afternoon, she couldn't believe that the pain was completely gone. "I'll never forget it," she says. "It was ten minutes 'til two in the afternoon when I woke up after surgery. I reached up and touched my jaw and was amazed! It didn't hurt! "It was the first time in 15 years that I could move my jaw without pain," she says."
She was discharged from the hospital that Saturday and flew back home to Alabama on Monday, less than a week after undergoing brain surgery.
"It was one of the best things I've ever done," she says. "The greatest thing that's ever happened to me. Seriously, if I hadn't had the operation, I probably wouldn't still be alive. The pain was so severe I couldn't do anything. I couldn't eat, lost weight and couldn't even brush my teeth. I didn't leave the house and didn't even get dressed in the morning. If I hadn't had the money to fly to California, I believe I'd have walked there to get that operation!"
Since her operation, Caldwell has a new mission in life -- to make other people aware that severe facial pain can be successfully treated and with minimal invasiveness. Recently, a woman from another state who had called Caldwell several months earlier to ask her about the procedure, called back to thank Caldwell for sharing her experience. "You gave me the courage to do it, too," said the woman.
Cedars-Sinai Medical Center is one of the largest non-profit academic medical centers in the Western United States. For the fifth straight two-year period, Cedars-Sinai has been named Southern California's gold standard in health care in an independent survey. Cedars-Sinai is internationally renowned for its diagnostic and treatment capabilities and its broad spectrum of programs and services, as well as breakthrough in biomedical research and superlative medical education. Named one of the 100 "Most Wired" hospitals in health care in 2001, the Medical Center ranks among the top 10 non-university hospitals in the nation for its research activities.
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