Emily

The Importance of Trust 

At the age of eight, Emily started showing symptoms of dystonia, though her family didn't know it at the time. She says her left foot was growing in the wrong direction, and she was advised to have corrective surgery. She was also referred to a neurologist, who suggested she might have dystonia and recommended genetic testing. By that time, Emily was experiencing similar symptoms in her right foot and both hands, and testing confirmed her diagnosis. As her symptoms worsened, including painful muscle spasms and difficulty walking, Emily and her family started thinking about DBS.

"I remember it being a decision that my parents and my doctors came to together," Emily recalled. "I trusted that they were doing what was best for me. They sat me down and explained the procedure and explained why they [thought] I should get it. And I agreed." She remembered being excited about the possibility of no longer using a wheelchair, which hindered her independence.

Emily remembers that her parents researched multiple doctors to ensure they were working with a neurosurgeon they trusted, and she felt safe in the hands of her doctor and medical team. At Emily's request, her neurosurgeon was able to perform the DBS surgery while Emily was asleep. She remembered feeling certain that the procedure would work, but she said she also made sure to set reasonable expectations and not to get her hopes up.

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Independence After Surgery

Emily estimates DBS alleviated 95% of her symptoms. In addition to the relief of muscle spasms, DBS restored her ability to move and walk freely without the use of a wheelchair. Reflecting back, she said her newfound independence was especially important at that time of her life, as it allowed her to hang out with friends and blend in with her peers. "I didn't feel so disabled – labeled disabled – anymore," she said.

Following surgery, it took frequent trips to the neurologist to get her device settings right. Since then, she's maintained the same settings for 10 years, and trips to the doctor's office focus mainly on making sure her device is working properly. "We just leave my settings where they're at. I don't change those myself at all," she said.
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A New Perspective 

The thick keloid scars from surgery were a source of insecurity when she was younger. "If I'm at the pool or at the beach, people stare. It's not the most comfortable thing, but I think anybody that has any bodily difference can relate to that." She finds her scars are less of an issue as an adult. "As you grow into adulthood, you become more loving of yourself and your body and the differences that make you unique," Emily said.

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When she was a busy undergraduate college student, Emily occasionally had a hard time remembering to charge her device batteries, but she finds that's no longer a problem, and her batteries have always worked well. A frequent international traveler, she takes her battery charger with her and makes sure not to go through any body scanners or metal detectors. "I've traveled for multiple weeks at a time without issues," she said.

For the most part, Emily says, people assume she's not disabled. "If I'm really tired or had a long week, or I've literally walked miles and miles and miles, you can see little changes in my gait and stuff like that. But for the most part, people just think I have a limp or something."

Now in graduate school pursuing her PhD, Emily has lived more of her life with DBS than without, and she finds it hard to remember what life was like before the procedure. "It's affected the trajectory of my life so much," she said, "I would not be independent. I would not be able to do any of the things that I've done without DBS."

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