SALT LAKE CITY — Taryn Hoffman started noticing distortions and twisting in her muscles 12 years ago. Three years later, doctors diagnosed the condition as dystonia, a neurological disease that produces radical and often immobilizing contractions of the muscles.

Victims of the disease suffer from cramps and shaking. They're often bent over because muscles will no longer hold the body in an upright position. The neck may turn or pull involuntarily, and spasms will sometimes cause the eyes to close.

Hoffman, 35, of Boise, had a form of the disease that mostly affected her neck and facial muscles. The neck and head would abruptly bend to one side, and her face would distort and grimace, almost as if she had been hit with some kind of paralysis.

She worked in the health care industry, and though her employer understood the condition, others did not. One day, the spasms hit while she was helping a patient. The patient, believing she was an addict, told her she might want to lay off the drugs.

"I burst into tears because I couldn't believe how hurtful people can be when they don't understand," Hoffman said. "I said (to the patient), 'Please don't judge me. I have a disorder that causes my body to do things that I don't want it to do and I don't mean to offend you, but that was not a very nice thing to say to me.’”

Hoffman battled her disease for nine years before hearing about deep brain stimulation. It's a procedure where doctors implant a pacemaker-like device just under the skin. Electrical impulses move up small wire leads to precise areas on both sides of the brain where short circuits interfere with normal muscle movements.

"Deep brain stimulation, in theory, comes in and normalizes that extra noise that's blocking the ability of the normal, voluntary movement to happen," said Dr. Lauren Schrozk, a neurologist at University Hospital.

For Hoffman, the deep brain stimulation implant at the University of Utah's Clinical Neurosciences Center has altered her life dramatically.

"(I'm in) absolute, complete disbelief — just utter shock," Hoffman said. "This is what it's like to feel normal."

Hoffman demonstrated the remarkable effect of deep brain stimulation. Using a handheld remote, she turned off her implanted device. In less than five seconds, the twisting of the neck muscles, the facial distortion and grimacing returned. When she turned the device back on, the symptoms disappeared.

With the implant, Hoffman does anything she wants because the spasms — "posturing" as it's called — are blocked.

"I was very self-conscious about myself," Hoffman said, recalling her life before deep brain stimulation. "I wouldn't want to go out. I wouldn't want to do things. I wouldn't want to be social at all."

The initial surgery for the implant takes four to five hours, and during part of that procedure, patients remain conscious. They have to respond when stimulated through small openings in the skull to make sure the permanent probes are precisely located where they'll do the most good. Even after surgery, some patients discover the right stimulation or waiting for the brain to make its own adjustments may take time.

"In a sense, we believe it changes or remodels the brain and causes a change in plasticity," Schrozk said.

University of Utah Clinical Neurosciences is now one of the country's major centers for deep brain stimulation, performing two to three procedures each week. From Parkinson's disease, tremors, obsessive-compulsive disorders, dystonia and more, it appears to block symptoms in different ways.

"In some scenarios you may want to block abnormal patterns, but in other situations you may be trying to enhance normal patterns," explained Dr. Paul House, a neurosurgeon.

Not all patients respond the same, and not all do as well as Hoffman. Deep brain stimulation allowed her to go off medications — some of which she believed were too risky for pregnancy.

But what a change after the implant. No longer needing medications to control the disease, Hoffmann got pregnant and gave birth to a baby girl two years ago, who joined her adopted brother as an addition Hoffman and her husband thought they would never experience.

To family, the Neurosciences Center, her support group and many others, Hoffman expresses a big thanks.

"They are a huge part of my life," she said.

The data for deep brain stimulation implants looks better and better with each passing year. Down the road, University of Utah researchers could become participants in trials testing the procedure to control depression and other neuropsychiatric disorders.

Email: eyeates@deseretnews.com