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Jennifer Giesen's obsessive-compulsive disorder was apparent from an early age.
"I had this thing where if I saw like a tombstone or a headstone in a book or passed one, I had to count them, and end on a certain number," she explained. "Also, I had to open and close things multiple times to make sure just to end on a good number or just until it feels right."
By age 8, she was in therapy and prescribed medication. But as she got older, her condition worsened. There were years when her own parents couldn't hug or kiss her because Giesen was too afraid of germs.
"If I touched her, she'd freak because I'm dirty," her mother Julie Giesen explained. "She'd be crying, I'd be crying."
Giesen's fear of contamination made school overwhelming, so she switched between schools and even tried home schooling. Though she left home for college to study photography, Giesen fell behind her junior year and dropped out.
Today, the 24-year-old lives with her parents in a Chicago suburb and feels like her OCD has taken over her life. Overwhelmed by thoughts of death and germs, she wears gloves almost everywhere.
"I don't want to touch anything that I don't have to," she confessed. "And there's some things that I feel are so contaminated that even if I wash my hands afterwards, it's not good enough, like I would want to burn my hands off."
Her OCD keeps her from working a stable job, so Giesen can only volunteer at an animal shelter and babysit on occasion. Her only safe space is her bedroom, where she keeps food and dozens of gloves. The OCD, she said, often drives her into depression.
Giesen has tried almost everything to treat it – from medications to cognitive behavioral therapy – but none of it has worked. Now, she's one of just a few patients in a clinical trial for a new treatment for patients with OCD who have tried everything else.
Deep brain stimulation, or DBS, where electrodes are planted inside the brain, has long been used to treat movement disorders, like Parkinson's disease and essential tremors, a nervous disorder that causes shaking. But doctors at the Mayo Clinic in Rochester, Minnesota, are just now pioneering its use for psychiatric disorders. If successful, they hope the procedure could be a critical breakthrough – not just for those with OCD like Giesen – but a potential host of other conditions, including depression, schizophrenia, Tourette syndrome, addiction and even memory loss.
The Mayo Clinic has performed hundreds of DBS procedures, mostly to treat patients with Parkinson's or tremors. And it’s had some dramatic results.
When Roger Frisch was diagnosed with essential tremors in 2009, he thought his career as a concert violinist was over. Every time he tried to draw his bow across his violin, his arm shook. It was impossible for him to perform.
"For most other professions, this would not be a concern," Frisch explained. "For being a violinist, where your career depends on the stability of your appendages, this was a great concern."
So he went to the Mayo Clinic, where neurosurgeon Dr. Kendall Lee believed DBS offered the best hope of ending the tremor.
While electrodes were being implanted in his brain, Frisch played the violin, which allowed doctors to determine whether the electrodes were positioned in the right places. After the second one was inserted, Lee said the result was immediate.
"We got that perfect note that he wanted, so that was very exciting," he said. "It was amazing."
When the DBS device was turned on Frisch's tremor vanished and he was back to playing with his colleagues at the Minnesota Orchestra within three weeks, he said.
Last month, Lee performed a similar surgery on Giesen, one of the very first patients enrolled in Mayo's clinical study examining the use of DBS to treat OCD. Giesen believed it was her last hope for a better life.
"If you told me today that there's no hope, that this is literally nothing left, you can't get this surgery, there's no more therapy, this is it, I honestly don't think I could keep on living," she said.
Giesen's DBS procedure on Aug. 25 was the first to treat OCD ever filmed for air at the Mayo Clinic. The surgery lasts three to four hours, including two DBS sessions that last between 30 and 45 minutes each. But the pre-surgery steps are lengthy, and painful. Even still, when Giesen was about to begin, she said she felt like a “kid on Christmas morning.”
Before the surgery, Giesen was fitted with a head brace to keep her head completely still. Then she underwent a series of high-resolution MRIs so Lee could avoid blood vessels that could hemorrhage while he placed the electrodes – just millimeters in diameter – deep inside her brain.
Giesen was anesthetized for the procedure, so felt no pain, but she could still hear the doctors drill the holes through her skull. As the implantation started, psychiatrist Osama Abulseoud stood by Giesen's side, controlling the voltage of each electrode with a handheld device. Her emotions changed as the voltage did, veering high and low, and she described her feelings out loud.
"I just feel like all of a sudden like I felt heavier and I felt more negative," Giesen explained at one point. But that horrible feeling passed quickly.
"I don’t know why I can’t stop. I keep smiling," she said a few minutes later.
At one point, Giesen erupted into laughter and said she couldn’t stop. At another, she said she wanted "to curl up into a ball and die."
Giesen insisted on wearing her gloves during the procedure, and like Frisch's violin, they became a unique way for the doctors to measure whether the electrodes targeted the correct areas. At one point, Giesen told Abulseoud that she could take the gloves off, before deciding she didn't want to. And when the voltage changed a few minutes later, so did Giesen's mood, dramatically.
"OCD is getting worse," she announced. "Like if Cindy [a clinical research coordinator recording Giesen's mood changes] tried to take my gloves, I’d probably start crying, so don’t do that."
With the electrodes placed, the doctors sedated Giesen so that they could insert a battery pack slightly smaller than a pager into her chest. The procedure itself was over, but the real test was yet to come.
The morning after surgery, Giesen was doing well. She said she couldn’t remember a time when she felt as happy or as hopeful as she did while in the operating room.
“It's been a long time since I felt like there was hope and that there was a chance that I could push the OCD away and be able to do the things I want to do in life," she explained.
While the electrodes are permanently implanted inside Giesen’s brain, the battery device connected to the electrodes has been switched off as she recovers. But even then, the doctors may not turn on her device for a while.
That's because Giesen is part of a clinical trial, where half of the OCD patients will have their devices turned on three weeks after the surgery, while the other half will not, in order to test for a placebo effect. When a patient whose device hasn't been turned on completes the three-month study, his or her device will be turned on. Each participant will continue with follow-up visits for the next four years.
In previous early studies using DBS to treat OCD, two-thirds of patients have seen the severity of their symptoms reduced by half, according to Abulseoud. But he's careful to clarify that DBS isn't a "magic wand."
"You would not expect someone to turn off a switch, that will say, 'I have no more OCD, I am cured.' We do not have that," Abulseoud explained. "But the mind is very powerful, that you will just come and say, 'My mind is less cluttered and I am seeing things much more clear,’ and… ‘I'm not so puzzled by that view of contamination.'"
Abulseoud says the effect of DBS is cumulative. "So you're going to get a little better, then a little better, then therapy comes and adds a little better, until you feel, OK, now I can function," he said.
Giesen wants the outcome of the study to help her become the person she was before her OCD, to be what she calls normal.
"To me normal things are being able to shower in your house, be able to wash your hands in the sink, not wear gloves," she explained. " To be able to go to the grocery store that's right near your house, and be able to drive past things that everyone else drives past and it doesn't bother them, and be able to do 100 things that everyone else takes for granted and thinks is so easy."
This week, Giesen will return to the clinic, when her device could potentially be turned on. She doesn't know which she'll get. Then, it's a waiting game to find out whether he surgery can be considered a success.
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