A Pa. woman with Tourette's had to put life on hold -- until deep brain stimulation offered relief

At La Belle Bridal Boutique in Beaver, Abigail Bailey is shopping for a Hailey Bieber-inspired corseted lace wedding gown. About a dozen friends and family members have joined her, toasting non-alcoholic champagne in celebration of a day made possible by an experimental brain surgery.

About a year ago, Bailey was so sick from illness and Tourette syndrome that her wedding was on hold. She could no longer work and had to move back in with her parents. She was also in constant pain, with tics so violent that she tore tendons and broke bones.

"The point came when I couldn't live my life," said Bailey, of Hookstown.

Tourette syndrome is relatively common, occurring in about 1 in 160 children, who experience involuntary motor or vocal tics. For 90% of those diagnosed, the disease is mild, and many children grow out of it after puberty. For Bailey, however, the tics were severe and debilitating. Now 24, she was diagnosed with Tourette's at age 3. She was also diagnosed with obsessive compulsive disorder, a disease that is often associated with Tourette's.

Her condition intensified in middle school and continued to grow in severity, keeping her out of high school for months at a time.

Even in high school, Bailey and her family knew that deep brain stimulation — an experimental treatment for Tourette syndrome — was an option. But it seemed so drastic that Bailey thought she could manage without it.

Patients with Tourette syndrome experience a misfiring of sorts in the circuitry in their brains.

Deep brain stimulation, in which electrodes are planted four to five inches into the brain, has been used successfully for movement disorders such as Parkinson's disease, essential tremor and dystonia since the 1990s.

In deep brain stimulation, or DBS, the electrodes function similarly to a pacemaker in the heart, delivering electrical impulses to get the brain's circuitry back on track.

"Another way to look at it is like a furnace that has no thermostat — it will just run in any random way," said Don Whiting, system chair of AHN's Neuroscience Institute and department of neurosurgery. "If you put in a thermostat, you can adjust how it works with heating and cooling until it's comfortable. It's kind of like a regulator of those circuits."

DBS was first tried for Tourette syndrome in the late 1990s and is used in cases where the condition cannot be controlled by other treatments.

One study in 2016 examined 156 cases around the world where DBS had been used for Tourette's and found a 53% improvement in symptoms. Over the years, researchers have tried stimulating different areas in the brain to best mitigate the symptoms.

"The thing about DBS is, if you don't hit the right relay center, you won't get the best results," said Whiting, who performed Bailey's surgery and has been performing DBS operations in Pittsburgh for more than 25 years.

DBS has never been officially approved by the FDA as a treatment for Tourette syndrome, because the number of people who would participate is fairly small to run clinical trials, said Whiting.

Bailey's family had researched DBS for years, and Bailey had gone to a Tourette's summer camp with someone who had benefited from the treatment. But she had managed her disease for years without it. Even with severe Tourette's symptoms, she was able to graduate from high school and get an associate's degree in social work. She got a job as a case manager at health care company ConnectiveRx, which accommodated her condition by letting her work from home part time.

She also got engaged. Bailey and her fiance, Shane Smith, have known each other since high school, and even went to school dances together as friends. They started dating after high school, and he proposed on a vacation to Destin, Fla.

But in the second half of 2024, Bailey started to feel sicker and sicker. What started as a bladder infection unknowingly spread to her kidneys. And her Tourette's symptoms worsened as her body fought the infection. She broke ribs and fingers from the intensity of the tics and, after she couldn't make it through Christmas dinner last year, she ended up hospitalized on New Year's Eve.

It was then that she decided to see Whiting about brain surgery.

"She was very determined that her best path was to proceed with DBS," said Whiting. "At that point, she couldn't hold a job because of her symptoms and she was still living at home. Her life was kind of on hold."

The procedure took place in March: two separate surgeries, followed by a return visit to actually connect the electrical components.

"It's when they turned that battery on that I felt a sense of happiness," said Bailey. "My life was coming back."

She worked with doctors and technicians over the next few weeks and months to adjust the settings, and was able to eliminate more and more of her tics. Her disease isn't cured — at one point when her battery failed, the tics came right back — but it is controlled. And while she still has occasional tics, her life is pleasantly unrecognizable from what it used to be, she said.

Even while shopping for a wedding dress, one of her grandmothers remarked that Bailey could just sit comfortably and peacefully now, versus when she seemed to always be moving as she fought her tics.

In front of many of the women in her family who had been on her journey, tears flowed as Bailey tried on one lace dress after another, looking for the perfect gown to celebrate.

"All you want is to be able to protect your kids, and you want to be able to solve their problems and, when you can't, it's devastating," said her mom, Colleen Bailey. "All I wanted her to do was have a life."

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