Danielle

‍Managing School and Medications

As a young teen, Danielle remembered being treated with Botox and taking Klonopin and Artane for muscular cramps and spasms. "I could barely think for myself because I was on so much medication," Danielle said. An honors student, she felt frustrated with her academic performance, and she worried about having to abandon her dreams of going to college. In school, she used a wheelchair, but because she couldn't hold a pencil, she took exams with a highlighter, which she held in her mouth. "I was able to do well or okay enough, but it was really challenging," she said.

Danielle recalled how stressful it was trying to adjust her medications to find an effective dosage. It meant a lot of trips to the doctor's office. "No matter how much I was on, it seemed like symptoms would always come through." Danielle didn't feel like herself while taking prescription drugs, and she remembered feeling depressed and overwhelmed.

No one else in Danielle's family had ever been diagnosed with dystonia or myoclonus, and she knew it was difficult for them, too. "It's always stressful, seeing your kid go through something so scary – and [when it's] nothing you've ever had to experience for yourself," Danielle said.

Danielle credits her mom with finding a solution. "She was tirelessly Google searching, getting me into the best doctors that we could find. She's the one who found out about DBS and advocated for me to receive the treatment."

Considering Surgery

Before surgery, one of Danielle's biggest fears was having a lead placed in the wrong spot, and she said being awake during surgery was scary. "You do hear them drilling the holes in your skull. You kind of feel a vibration." But she said those are minor things that shouldn't keep people from getting DBS.

Recovering from surgery, Danielle said she had friends over every weekend and that she integrated back into class within a few months. The hardest thing to get used to was having wires in her neck. "The brain surgeries were not that painful, because you don't really feel the inside of your head," she said. But she said having the wires pushed down into her chest and connected to the DBS leads was painful.

To this day, "I do have some neck wire pain, if I move my neck too quickly or if I get whiplash, but it's nothing too severe, " Danielle said. "It's not a reason not to get DBS, if you're in a situation like mine where there's no medication option."

Before DBS, Danielle had loved riding on roller coasters, which she can't do anymore. But, she said, "I'd rather be living my life as fully as possible, so if that means not going on roller coasters, I think I'm okay."

Living with DBS at College

Reflecting on her path to law school, Danielle thinks she would have pursued a similar route if she had never had dystonia or DBS. By contrast, she said, "If I had continued to have symptoms, I don't think I would've been able to go to college. And I don't think I would've ended up in law school."

Danielle sees her neurologist every six months and gets her device batteries replaced every three to four years. She said she was initially told the battery would last closer to five years, so it's been disappointing to have to undergo more frequent replacements. Even so, she said the procedure only takes about a half hour and is done without anesthesia. She's waiting on battery technology to improve before replacing her battery with a rechargeable one.

Occasional arm tics are Danielle's only remaining symptoms, and neck pain can cause her to worry if a wire has broken. But a Bluetooth-enabled device connected to her system lets her know if everything is working properly, and she says it gives her comfort to know that her device is stable.

Danielle said that going through the DBS procedure is "miserable," but that the outcome is "amazing." And her journey has provided a surprising benefit: She said she's become a more eloquent speaker from talking about her experience with DBS.

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