Neurosurgeon speaking to Regina support group on Astini News
REGINA — It's like being electrocuted — or having a nail driven into your cheek.
That's how patients with a relatively rare condition describe the intense facial pain they feel.
Trigeminal neuralgia is one of the most painful conditions known, said Dr. Anthony Kaufmann, a Manitoba neurosurgeon who specializes in treating the disorder.
"It's often been called 'the suicide disease' in reference to how severe the pain is," said Kaufmann, who speaks Saturday in Regina.
Generally, the pain is on one side of the face.
"The pain typically comes as brief attacks lasting seconds up to a minute or two and it's described by people as extremely intense," Kaufmann said.
Nearly all cases are caused by blood vessels compressing the trigeminal nerve as it enters the brain stem.
"Most everybody with this condition gets better with medications — they're actually anti-convulsant drugs that work specifically for this condition," Kaufmann said. "The standard painkillers don't usually work for this."
About half of those with trigeminal neuralgia eventually need surgery.
"People come for surgery when their pain is not well controlled or if the dose of the medications they're taking is causing them troubles, either side effects or complications," Kaufmann said. "That may happen after a year or two of the disease, it may happen after a decade or two — or it may never happen. Some people get by on medications forever."
Across the country, there are few surgeries done for people with trigeminal neuralgia.
"I do a very large proportion of them here," Kaufmann said. "We do see patients from different provinces coming here just because of the fact that we do so many of the operations here."
He was invited to speak about the nerve disorder by the Regina chapter of the Canadian Trigeminal Neuralgia Association at 1 p.m. Saturday at the Wascana Rehabilitation Centre's auditorium. There is no charge to attend.
Five years ago, Faye Meyer founded the support group, which has 70 members from Regina and southern Saskatchewan.
The condition caused Meyer to suffer excruciating pain, beginning in April 1999. It took years and brain surgery before she got relief.
"Now, I'm pain-free for the most part," she said. "I do try to keep things positive in the group and encourage people who have had surgery to come back to the group and speak."
Kaufmann estimates 150 per 100,000 people have trigeminal neuralgia. Because it's relatively rare, many people have difficulty being diagnosed.
"Almost half of the people with this condition will end up having dental procedures or root canals to try and fix this pain, which is usually in the lower half of the face ... A lot of people go through unnecessary or misguided treatments," Kaufmann said.
Because little information about the disorder is covered in medical schools, Kaufmann encourages doctors and dentists to attend Saturday's support group meeting.
"Patients often complain that it takes a long time to get updated, accurate advice," Kaufmann said. "Even if they have a diagnosis, they're not always given the best management advice because the doctors and dentists don't have a lot of experience with it."
He said support groups provide valuable information about the disease and treatment options.
"For people with trigeminal neuralgia, there are options out there and hope for them to improve from their condition," Kaufmann said. "I encourage them not to give up if they suffer from this disease."
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