Can surgery cure Tourette Syndrome?

Sara James Correspondent • Profile

Pictures from Peter Jensen’s past tell the story of a family man— a devout husband and father, someone eager to enjoy life.

Roshana Jensen, Peter Jensen's wife: What really attracted me to him was his sense of humor and his laughter. He was very caring for other people. In some ways, I guess, you can consider it your little fairy tale marriage— we never fought.

The fairy tale began in 1998 when the then 23-year-old Utah man wed Roshana, whom he’d met at a church function. They would go on to have four children together.

Peter Jensen: I think getting married was probably one of the best things that ever happened to me.

But behind the joy lurked a chronic problem the couple thought was under control: Peter has Tourette syndrome, a neurological disorder characterized by repetitive involuntary movements and vocalizations called 'tics.' Diagnosed at age 11, Peter’s symptoms were largely suppressed by medication until well into adulthood.

Roshana Jensen: We had almost two years where it was very, very mild, and it was wonderful.

Sara James, Dateline correspondent: And when did it get bad?

Roshana Jensen: It started getting bad after our twins were born.

Nationwide, doctors say 200,000 people suffer from Tourette Syndrome.  In most cases the tics are relatively minor: repetitive shrugging or blinking, or more notoriously, shouting obscenities.  And, as was the case for Peter for many years, often the frequency and severity of tics can be limited with medication.

But sometimes, a person’s body gradually adjusts to medicine until it no longer works... and that’s exactly what happened to Peter.  By November 2004, when NBC first met him, the 29-year-old husband and father was at war with himself.

Roshana Jensen: The best way I can think to describe it is its like running a marathon every single day and then taking yourself and beating yourself against a rock for three or four hours.

It was painful to witness for his family, and excruciating for Peter, who was powerless to control urges that compelled him to pummel his own body.

Over the last few years, his physical tics became so violent he damaged his ribcage, his vocal outbursts so frequent, he had trouble completing a simple thought. Doctors considered his case one of the most severe in the country.

Peter Jensen: It’s almost like you’re in the middle of a sprint, a 50-yard dash and you’re running. It’s as constant effort just to get each word out - to be able to just talk.

Roshana Jensen: It's my lifeline quite literally.  Without this hope there’s just a loss of so much.  The loss of a father, the loss of a husband – and unless we can hold on to that hope, there’s nothing there.

Peter Jensen: It’s a constant effort to get each word out. Eating is quite difficult. It comes to a point where it takes me an hour - 2 hours just to eat.  And by the time I’ve done so many of these motor movements and tics, I’ve become so exhausted, I’ve almost lost interest in the food.

With simple tasks so difficult, meeting the responsibilities of being a husband and father were virtually impossible. Peter had to quit his job as a bank teller.  He couldn’t drive, couldn’t do work around the house.  Wife Roshana had to take care of four children 5 years old and under and her husband, too.  Tourette Syndrome was destroying Peter and taxing his marriage.

Then last year, out of nowhere, a possible answer: The couple learned of a landmark trial.  Doctors from the University Hospitals of Cleveland wanted for candidates for experimental brain surgery aimed at suppressing severe Tourette’s.  Even though they realized the operation was risky,  the couple leapt at the chance.  In a rare, tic-free moment, Peter explained why.

Peter Jensen: I really don’t have any other choice. If this doesn’t work, if something else doesn’t come along, my body will just wear down eventually.

James: Is then this your last hope?

Peter Jensen: Right now it is.  Yes.

But for Peter, waiting for the clinical trial became a race against the clock.  By December 2004, one month after NBC began following Peter, his Tourette’s got dramatically worse.

Roshana Jensen: Even taking a shower was getting to the point where it was dangerous cause he would fall.

Roshana told us she had no choice but to place her husband in a nursing home. She said Peter’s tics had become so  relentless that he was unable to feed himself... the doctors had warned Peter’s dangerous weight loss,  in addition to the constant wear and tear on his body, could ultimately kill him. 

Roshana Jensen: Right now what’s been keeping him going is the fact that he’s got a feeding tube, otherwise he would literally starve to death.

When our producer asked peter a strightforward question, he made several attempts over a span of several minutes to respond, but he couldn’t.

Roshana Jensen: You try to talk to him the tics get in the way, and the converation thread is lost very easily.

What made the situation doubly hard, Roshana said, was that Tourette’s Syndrome not only had strained their marriage, but makes it impossible to talk about that strain.

Roshana Jensen: The more stressed he gets, the more he tics.

James: So in essence, to even talk about it would be to make your husband sicker.

Roshana Jensen: Yes.

In her effort to maintain some semblance of family life, Roshana brought the children to the nursing home to visit Peter a few times a week.

But by this stage, even seeing the children seemed too much for Peter. Indeed, he was so choked with emotion that it  seemed to prompt an especially intense flare up of his tics.

James: Are they frightened by the tics?

Roshana Jensen: I don’t think they’re frightened by him. A lot of the time, it’s just uncomfortable.  His tics can be very loud and that’s not comfortable to them.  If you get too close to him you’re bound to get hit. And they just don’t understand that he’s not doing it on purpose.

In June 2005, six months after moving to the nursing home and with his connection to his children increasingly fragile, the Jensens got the big news they’d been praying for.

Doctors were finally ready to begin the trial so Peter could head east,  to the University hospitals of Cleveland.  Doctors said this high-risk, experimental brain surgery might halt his tics once and for all, and save him from an early death. Of the five patients in their clinical trial, Peter would be first.

James: Peter, you have brain surgery scheduled for tomorrow. What are your hopes for the surgery?

Peter Jensen: Very optimistic... that it’ll all work.

But would it?  Everything was riding on it: the life of a dying man, the well being of his young family, and the hopes of others like Peter Jensen were waiting in the wings.

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