Clinical Center News
Fall 2019

Deep brain stimulation allows flutist to play again

Julianna Nickel playing the flute
Julianna Nickel plays her flute during surgery at the NIH Clinical Center for Focal Dystonia.
National Symphony Ensemble with Julianna Nickel as guest flutist
Julianna Nickel (left) is often a guest performer for the National Symphony Ensembles at the Clinical Center. Photo from May 21, 2019.

Many patients look for ways to "give back" to NIH for providing hope, but for Julianna Nickel, she is sharing the very thing that NIH returned to her — the ability to play the flute.

Nickel's condition, called Focal Dystonia, is a rare condition that is task-specific; it only affects her when she plays the flute. It is a neurological condition that took a while for doctors to diagnose.

The standard treatment was botulinum toxin (e.g. Botox) injections, which helped to a certain extent, though not fully. Through a physician friend, she heard about a study on Parkinson's, which sent her on a Google search, ultimately leading to the discovery of the NIH clinical trial trying a new treatment – DBS, or deep brain stimulation. This study targeted patients who didn't respond to botulinum toxin injections. She decided to enroll.

In 2017, Nickel met with Dr. Debra Ehrlich, chief of the Parkinson's disease Clinic with the NIH National Institute of Neurological Disorders and Stroke (NINDS), and the Movement Disorders team at NIH. She started the process of testing and answering questionnaires.

Finally, she and her husband, who is a horn player with the National Symphony Orchestra, met with the neurosurgery team to finalize plans. This was the first time surgery of this kind has been used to treat Focal Hand Dystonia in musicians. According to Ehrlich, DBS has been quite successful in patients with other neurological conditions such as Parkinson's and essential tremor. But not for Focal Dystonia. What's more-Nickel needed to be awake and play her flute during the invasive surgery.

Nickel says, "The more we met with the doctors and nurses, the more convinced I became that they were the best. So I was comfortable with this surgery."

The surgery involved creating a small hole in the skull and passing a DBS electrode into a specific location in her brain. A battery was then inserted into her chest under the skin. Similar to a pacemaker, electrical signals are sent from the battery to the electrode. During the procedure, Nickel played scales and songs from the operating room table while the team tested the electrode. The OR team was excited to see improvements in her finger movements when they provided test stimulation through the electrode. The stimulator was then turned off and her brain was given time to heal.

A month after surgery, Ehrlich turned on the stimulator. She needed to adjust the amount of voltage, pulse-width and frequency to have the best effect. At each visit, further changes were made to the stimulation parameters in an attempt to optimize the benefit.

Ehrlich reports that Nickel was very patient throughout the study. "Her persistence speaks to how important music is to her," she said. Although finding the best setting for the stimulator is ongoing, the surgery, along with occasional Botox injections, has allowed Nickels to play the best she has ever played.

Currently, she is the Adjunct Professor of Flute at George Mason University and is a two-time recipient of Mason's Distinguished Teacher of the Year (2019, 2017). She also freelances as a chamber musician and is a guest performer for the National Symphony Orchestra (NSO) Chamber Groups at the Millennium Stage at the Kennedy Center and Music in the Atrium concerts at the NIH Clinical Center Atrium. So when Nickel performs with an NSO group at NIH, it is a very unique connection.

She says, "I get to come back and do what I do as a living, knowing what it's like to be a patient, and to put your trust in the nurses and doctors here."

Readers may find more info at her Facebook page "Julianna's Journey: flute, focal dystonia, and surgery"

- Debbie Accame

All patients, visitors and staff are screened for Covid-19 when they enter the hospital
People working on sewing blankets
Janet Logan
Group of people celebrating Bill Cervenka's 400th platelets donation
Dr. Marta Čeko
The NIH Clinical Center Nutrition Department's new biodegradable cups and plates
NIH Clinical Center staff member
Dr Kadri receives 2018 Science Award
weight, scale and an exercise ball
Dr. Huy Michael
Noah Victoria speaking
Jim Gilman, CC CEO
Dr. Tomislav Mihaljevic, Mihaljevic is Laura Lee, and Dr. James K. Gilman
Dr. Douglas Rosing
Dr. Francis Collins, Dr. Emily Chew and Dr. Jim Gilman
NIH Clinical Center Atrium
Federal Employee Viewpoint Survey - your opinion counts!
David Henderson
A gathering of NIH staff and blood and platelet donors
Dr. James Gilman and Stanley Hess
Lunch and Learn
2019-2020 Introduction to the Principles and Practice of Clinical Research Course now open
mother with a child playing with a toy
Ingrid Harris, Mitzi Kosciulek and Richard Appling pose with two Marines during NIH's 8th Annual Veterans Day Celebration Nov. 12
Dr. Curtis Longlotz speaks at a podium
Tricia Coffey, chief of the Health Information Management department participated as torchbearers
Program graduates pose for a group photo
Rabbi David Shneyer (right) shared songs of healing from the Jewish tradition
NIH Social Media team livestreams the winners on Twitter
Pharmacy symbol icon
NIH Clinical Center releases Strategic Plan
Mary Sparks receiving a flu shot
wristband with ALLERGY on it
Awardees Elise Ferré, Maureen McDonnell, Ruth Parker and Dr. Douglas Rosing
Language Interpreters Program staff
Dr. Harvey Klein
Julianna Nickel playing the flute
CC Research Nursing Department trains University of Guam Nursing students and Faculty
Dr. Francis Collins, Thu Cao and Dr. Jim Gilman
Dr. Jo Shapiro
Jim Howson
Screen capture of Meet Our Doctors, a new feature of the NIH Clinical Center website
Dr. James Gilman, NIH Clinical Center CEO, addresses staff clinicians
Michael Murphy at a podium
Nurses working on a pedigree diagram within a patient's medical record
nurse kneeling beside a pediatric patient
people gathered around computers
Patient standing with care providers
The metabolic kitchen staff creating precisely measured ultra-processed and unprocessed meals for study participants
Attendees of the Open Notes session gathered together