Patient describes life with trigeminal neuralgia

Patient describes life with trigeminal neuralgia
Ana Kristof (Source: Ana Kristof)
Ana Kristof (Source: Ana Kristof)

BATON ROUGE, LA (WAFB) - Smiling was once something that brought pain to Ana Kristoff. For decades, the smallest movement or lightest touch could bring her to tears.

"The first time I sneezed and passed out from the pain, I knew I was in trouble," said Kristof.

Kristof suffers from trigeminal neuralgia, also known as tic douloureux or "painful tic." It's a condition that affects the trigeminal nerve, which transmits what you feel on your face to your brain. In Kristof's case, the main sensation she felt was a pain she describes as a stabbing electrical storm in her head.

Anything from brushing teeth to putting on makeup could trigger a flare up.

"It's like the wind could trigger that pain," said Kristof.

Doctors explain it's hard to know exactly what causes the debilitating condition, and treatment can be difficult. Kristof went through countless medications and two brain surgeries with no relief. Little by little she said she shut herself off from the outside world, fearful of what may trigger an attack.

"I was a prisoner in my home," said Kristof.

That's when Kristof turned to the Mary Bird Perkins Our Lady of the Lake Cancer Center and the Gamma Knife Icon Machine available there. The Icon machine is an advanced piece of technology most commonly treats brain tumors by delivering an extremely precise dose of radiation. The same treatment can also help people with trigeminal neuralgia by targeting the nerve at the source of the pain. As the nerve heals, symptoms can gradually fade.

"With this technology and the precision we get from it we have about an 85% chance of being able to be successful," said radiation oncologist Dr. Renee Levine.

While some tingling remains, now Kristof can return to her full life, chasing grandkids and fishing, every smile a victory. She said each week that goes by bring more improvement.

"It's unbelievable and people don't understand it's better than Christmas morning," said Kristof.

According to the Mayo Clinic, there are less than 200,000 trigeminal neuralgia cases reported each year and its most common in older women. Symptoms can begin with a pain similar to a tooth ache and progress overtime.

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