Amy

‍Differing Diagnoses

Danielle was in eighth grade when her mom, Amy, first noticed involuntary muscle movement in her daughter's arm while writing. Concerned, Amy took Danielle to see two different neurologists. One thought Danielle was conscious of the movements she was making. The other told Amy it was urgent to put Danielle on anti-seizure medication.

Worried medication would impair Danielle at school, Amy decided to hold off on giving her any prescription drugs. But by ninth grade, Danielle's symptoms began to worsen, including eye and neck spasms. A visit to another neurologist resulted in a possible myoclonus-dystonia diagnosis. As Danielle's symptoms increased, they tried Botox injections. Eventually, another medical consultation confirmed Danielle's diagnosis.

By tenth grade, Danielle was on a regimen of medications and Botox, but as Amy recalled, "Nothing seemed to be working. One moment, she would be okay, and the next moment, you'd see her and think she was completely disabled. She couldn't walk, couldn't write." That's when they decided to proceed with DBS surgery.

Moving Forward with DBS

Danielle underwent three surgeries for DBS, her mom recalled. "She had one electrode put in in January, one electrode put in in February, and then she had the whole system connected in March."

Going into the process, they were prepared for it to take time and knew not to expect improvements overnight. "We were going into New York City almost every single week from April until November. It took them that long to get the programming exactly right," Amy said.

Between surgeries, Amy felt it was important to maintain as much normalcy as possible, so that Danielle could resume a typical schedule when she was ready to return to school. To stay on track with her academic work, she received instruction at home. To keep up a connection with her classmates, she went into school for extracurricular activities in the afternoons.

By November, Danielle’s symptoms had almost completely disappeared. They soon discovered, though, that flashing lights in a play or movie could cause a recurrence, but sunglasses proved to be a simple solution to over-stimulating environments.

Post-Surgery Considerations

Even after DBS surgery, it took time before Danielle was able to stop taking medications altogether, but she was finally able to do so before heading off for college. Into her second year of law school, Danielle continued to be mostly symptom-free.

Even so, Amy still worries about the emotional stress her daughter experiences living with her condition and taking care of her DBS device. She explained that if the device stops working, Danielle’s symptoms can return in a matter of minutes. Amy also worries that Danielle could get an infection or break a wire.

For Danielle, Amy said, the benefits of DBS outweigh other considerations. When considering surgery, Amy counsels other families to first find a really good neurosurgeon. "Make sure you can go to the best person out there," she said. "Remember, it is brain surgery."

‍