Dr. Keller: Large Study Finds Predictors of Musician's Dystonia

I saw my friend Richard Ware share this insightful article, so wanted to pass it on....hit "continue reading" in order to see full article.

Large Study Finds Predictors of Musician's Dystonia
Daniel M. Keller, PhD

October 09, 2019

NICE, France — A new review suggests musician's focal task-specific dystonia (MFD) often occurs subsequent to a triggering factor, such as a change in technique or increase in practice, and that many patients have concurrent ipsilateral neuropathy, particularly ulnar neuropathy, suggesting it may be an important risk factor, researchers report.

MFD affects 1% to 2% of professional musicians, is an important occupational disability, and can be career-ending. The most common form is musician focal hand dystonia (MFHD), with onset in adulthood at the peak of performance careers.

Less common is embouchure dystonia, which affects woodwind and brass players. Typical treatment with botulinum toxin injections and retraining are most often unsatisfactory.

A review of 2649 case records of performing musicians from health clinics treating performing artists at the University of California San Francisco (1984-1989) and Partners HealthCare in Boston (1989-2015) identified 240 consecutive cases (9.1%) of MFD. Cases were compared with a cohort of 532 nondystonic patients with ulnar nerve entrapment.

Speaking during a group poster tour here at the 2019 International Congress of Parkinson's Disease and Movement Disorders, Christopher Stephen, MB ChB, Massachusetts General Hospital and Brigham and Women's Hospital Performing Arts Clinic, Boston, Massachusetts, reported that "ulnar nerve entrapment had increased prevalence in focal hand dystonia — 30% as opposed to 22% in our whole musician's cohort of 2649 musicians."

In addition, of the 66 patients with MFHD and ulnar nerve entrapment, all but one were ipsilateral. "It's quite a striking finding," he said.

Predictors of MFHD versus ulnar nerve entrapment included male gender and playing professionally (both P < .0001). Predictors of worse outcome included the number of fingers involved with dystonia (P = .0009) and being an amateur musician (P = .0138).

Ten percent of the dystonic cohort had a family history of movement disorders, whereas this was very rare in patients with ulnar nerve entrapment only.

The MFD population was about 70% male, consisted mostly of professional musicians but also 30% amateurs and about 8% conservatory students. The age of onset was about 36 years but with a wide range of 10 to 67 years. About 72% performed classical music, 16% jazz, and 12% other genres.

A side predilection depended on the kind of instrument, for example, piano or plucked strings. MFHD was rare in brass and percussion players.

Of the 215 cases with MFHD, 160 (74.4%) had a pure flexion dystonia, most of them with flexion of the ring and little fingers. Extension-only dystonia occurred in 25 patients, and most of them played woodwinds.

The majority (72.2%) of MFHD patients had reported an associated event prior to developing the condition, whether musical (eg, increased practice, new technique, or a new instrument) or nonmusical (eg, concurrent neuropathy, overuse injury, or emotional stress or trauma).

Fifty-two patients (24.2%) received botulinum toxin injections, with 30% of them having substantial improvement, but most discontinued this therapy due to lack of benefit. Oral medications were minimally effective in treating dystonia in MFHD but sometimes helped treat tremor.

Of the 66 patients that had ipsilateral ulnar nerve entrapment and MFHD, 27 underwent surgery for the entrapment. Most had substantial improvement in symptoms and signs of ulnar nerve entrapment, and a minority had improvement in dystonia.

"So it could suggest that having surgery, if you do find an ipsilateral ulnar nerve entrapment with dystonia...may help some patients have a substantial improvement after surgery, but not in general," Stephen said.

He noted that changing to a different instrument helped some patients, but even then over time dystonia developed with that instrument as well. Just over half of MFHD patients continued to play but were impaired.

After Stephen's presentation, a lively discussion ensued between him and Alberto Albanese, MD, Catholic University, Milan, Italy, one of the leaders of the poster tour. Albanese raised the possibility of better training in technique to avoid dystonia.

"I was thinking that probably appropriate training to some extent prevents future dystonia because I follow the director of the conservatory in Milan, and I discussed with him many times about how to train musicians from the very beginning to try to prevent dystonia," he said.

Although an interesting idea, Stephen said the study involved people who already had dystonia and explored what were predictors of worse outcome. But he agreed that better training may help avoid dystonia. "It may also give them the expertise to be able to still play to a decent level and adjust the repertoire," he said.

"Well, it depends on the severity because they try as much as they can because they love music. So for them to stop is really a problem," Albanese concluded.

There was no funding for the study. Stephen has reported no relevant financial relationships. Albanese has received speaker's honoraria from Allergan, Ipsen, Merz, Medtronic, and Zambon.

International Congress of Parkinson's Disease and Movement Disorders 2019. Presented September 24, 2019. Abstract 1345.

Musicians Well: Flautist Julianna Nickel on Focal Dystonia and Brain Surgery

So happy to see you featured Julianna Nickel!!! What I have always looked up to most about you is your straightforwardness when it comes to pointing out the truth/facts about focal dystonia, and for always seeing both sides of an issue clearly. Thank you for continuing to share your journey! 🎶💕

2019: Upcoming Research Looking for Musician's with Dystonia

1st opportunity...

This is a great opportunity for guitarist with focal hand dystonia to participate in actual retraining research!! More studies on rehabilitation strategies is so important!!! Don't miss this rare opportunity.

Recently I posted/wrote a blog post over Dr. Serap as a highlighted medical professional and professional musician. You can find it on my FB and Living with Embouchure Dystonia page and my blog. 

"Retraining Strategies in the Management of Guitarists’ Dystonia

Johns Hopkins University is conducting a study on guitarists’ dystonia retraining strategies and effectiveness. Researchers from the Peabody Institute and Department of Neurology are looking for guitarists with dystonia that affects their right hands as well as healthy guitarists who play classical and fingerstyle guitar. If you are interested in participating in this study or for more information, you can directly reach Dr. Serap Bastepe-Gray at 443-939-5578 or at sbastep2@jhu.edu."

2nd opportunity...

Research Seeking for Musicians with Focal Dystonia

We are a neuroscience research group from the Massachusetts General Hospital Institute of Health Professions. We are recruiting musicians diagnosed of focal hand dystonia or adductor spasmodic dysphonia (laryngeal dystonia) to understand how dysfunctional brain networks impact involuntary movements. MRI and transcranial magnetic stimulation (TMS) will be used to measure brain activation and networks over two visits. Your contribution will help researchers/clinicians improve understanding of this disease and assist treatment development!

Location: Massachusetts General Hospital - Martinos Center for Biomedical Imaging (visit 1) and Voice Center (visit 2).

Time: 2 visits over two days. 2.5-3 hr for each visit.

Compensation: $200. Travel expense coverage up to $500 based on distance.

Funding source: National Institutes of Health (NIH)

Study contact: Yi-Ling Kuo, ykuo@mghihp.edu

The MRI Brass Repository Project March 2019

https://www.gordon.edu/mrihorn

Please donate this month!!! I spoke with Dr. Iltis last year via skype/phone about the project and we had a long conversation over our experiences. It was one of the best conversations I've had over embouchure dystonia. I really wished to participate, however, the deadline had passed, and neither they or I could afford the flight costs from U.S. to Germany, housing and food.

I'm happy to see they've been granted more time!!! I'm hoping they'll receive the funding needed, as there is not enough research being done on embouchure dystonia in general and I would love to see them get as many scans as possible on this rare piece of equipment.

They are using one of the fastest imaging scanners that exist. It can provide more insight as to what is going on inside while we play; not only in the brain, but physically. It is very high definition. They are comparing the imaging scans from the professional brass players without dystonia to the group of brass players with embouchure dystonia. They are also gaining more insight into how playing varies form individual-to-individual anatomically within. This can help educators and musicians begin to really understand further details as to what is involved in the function of physical performance.

I'm rooting them on and so very supportive of this research!!!