Absarokee woman seeks $72,000 surgery to alleviate debilitating 'suicide disease'

2014-06-10T23:45:00Z 2014-06-13T15:15:26Z Absarokee woman seeks $72,000 surgery to alleviate debilitating 'suicide disease'By CINDY UKEN cuken@billingsgazette.com The Billings Gazette

ABSAROKEE — Imagine a pain so brutal and relentless that it feels like you’ve been punched in the face — for days. It is a pain so debilitating that it hurts to wash your face or even get a kiss on the cheek.

This is the kind of pain that Stephanie Raville has lived with since May 2011.

That is when she was diagnosed with two separate conditions, both of which leave her incapacitated, unable to do anything but hunker down with prescription pain medication and a heating pad and sleep.

The attacks, which occur almost weekly, can leave her paralyzed with pain for days.

Raville, 41, owner of Star Bright Daycare, suffers from trigeminal neuralgia, a rare nerve disorder that affects the cranial nerve called the trigeminal and leads to intense, sometimes burning or stabbing pain. The trigeminal nerve is one of the most widely distributed nerves in the head and these painful attacks can last for hours or days, according to the National Institute of Neurological Disorders and Stroke.

The pain is usually caused by some kind of artery or vein compressing the nerve as it pulses. Eventually the pulsing can damage the nerve, leading to excruciating pain.

Trigeminal neuralgia, which usually affects people older 50 and usually women, can be so painful for patients that is had been nicknamed the “suicide disease” because it drives many people to suicide in search of relief.

“It feels like a knife stabbing you in the face,” Raville said. “And, it goes on and on and on. One episode lasted three days.”

The disorder strikes 12 out of 100,000 people each year, according to the National Institute of Neurological Disorders and Stroke.

Raville relies on a close-knit circle of friends and family to operate the day care, which caters to 16 children ages infant to 12, when she is unable.

The mother of three children, ages 16, 19 and 21, also suffers from atypical facial pain, a pain disorder that shares some features with TN. The pain may be different — most often longer in duration (minutes, hours, or continuous), and of a dull, aching, burning, sharp, squeezing, or crushing quality. Sometimes the pain may be precipitated by sinus surgery, dental work, or facial trauma.

Her eyes swell, impairing her vision. Her face reddens and her head throbs.

A once-popular fixture at her son Billy’s wrestling matches and football games, Raville has been sidelined for many of the sporting events this past year.

“To me, that’s the worst part of it all,” she said, choking back tears. “I find myself crying all the time.”

She attributes her condition to five sinus surgeries and two subsequent and distinct infections between 2007 and 2011.

“I’ve never been the same,” she said.

The dual diagnoses have sent her looking for relief from neurologists and pain specialists at a Billings hospital, the Mayo Clinic and a specialty institute in Colorado.

Her only hope, as she sees it, is to have a neuromodulation device implanted in her cervical spine in Colorado. By definition, neuromodulation is a therapeutic alteration of activity either through stimulation or medication, both of which are introduced by implanted devices.

“It scares the you-know-what out of me, but I keep thinking if it helps me, it will be worth it,” Raville said. She would like to have the surgery in July so she will not miss any of her son’s sports activities during the upcoming school year.

But there is a hitch.

Insurance will not cover the $72,000 procedure because it is not yet FDA approved.

To help, her friends have organized a benefit, hoping to raise most, if not all, of the cost of the procedure.

“Her friends see her in so much pain and it’s hard for us to see her like that,” said Cheryl Kennedy, one of the benefit organizers. “It’s the only thing that’s going to help her. They call it the ‘suicide disease’ because most people only live three years before they commit suicide. Stephanie has been living with this for five years.”

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