This is a fantastic story about VNS therapy success for one of our friends, Tina Lewis.
After a snowmobile accident in Butte Meadows in 2002, Tina Lewis, 45, began suffering epileptic seizures – sometimes up to 20 uncontrolled seizures a day — not to mention splitting headaches. She was taking numerous prescribed medications – at one point, 16 different pills four times a day. All the medications weren’t to control her seizures, some were to counter the side effects of other medications.
Over the course of two years since the accident, her weight dropped to about 98 pounds and she was confined to a wheelchair. The several medications also affected her coherency and her speech. She said she spent a good two years in her bedroom because she was basically immobilized. Her eyesight was also affected. After a visit to her eye doctor, she was told her eyes weren’t the problem, it was her medication.
Lewis finally took to the Internet to look for help.
“I was sick of being sick,” she said.
That’s when she came across Vagus Nerve Stimulation Therapy. Made by Cyberonics, Lewis describes it as a sort of “pacemaker for the brain.”
“I spent days on the Internet researching,” she said. “Research, research, research. I wanted to know everything about it.”
She found out the VNS is not only FDA approved but is covered by most insurance plans. The VNS device was finally implanted on September 2006.
“Yeah, I was nervous, I was going to get my throat cut open,” she said.
She was weaned off her medication and an electronic box was implanted near her left shoulder. A wire runs from the device, up her neck and into her brain.
“Seizures are about a misfire in your brain,” she said.
From the box, electric pulses are sent to her brain to keep her stable. It was an outpatient process and she was finished with the operation and released within hours. Now when she begins to feel a seizure coming on, she runs a provided magnet over the box, which either stops or greatly reduces the severity of the seizure.
And it works, she said.
“Instead of 10 to 20 seizures a day uncontrolled with medication, I have two or three a month, with no medication and no wheelchair,” she said.
Lewis always keeps her little black magnet with her in case she senses a seizure about to occur. She also keeps several black magnets stashed at various places around her house. And she never goes anywhere alone. There are side effects, she said. She goes hoarse when the box sends its electric pulse to the brain.
“You can feel it in your throat,” she said.
There is also the sensation of minor electrocution, but she can live with it, she said.
“I’ll take the side effects over the splitting headaches and the alternative,” she said.
Now Lewis wants others to know about VNS therapy and she hopes her story will help stop the stigma of seizure disorders.
“Seizure disorders are hard to prove,” she said.
She said a lot of people think seizures are drug and alcohol related fits, or a psychological disorder. Since the implant, her quality of life has shown clear improvement.
“I have more independence, no in-home care and no more meds,” Lewis said. “I can think straight, I’m not cloudy like I was when I was on medication.”