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.

Colin Williams: On Muscle Tear Recovery

A wonderful post by trombonist Colin Williams who teaches at the Manhatten School of Music. He shares his experience overcoming a major embouchure injury - muscle tear. Please read the comment section full of questions, informative answers, including links. What I love most is the respect shown for Lucinda Lewis and the late Laurie Frink; both trailblazers in helping others in the area of recovery and injury knowledge. My heroes. Not to mention Dr. McGrail and Dr. Vander Kolk who have helped several musicians via muscle tear surgery when out of all options. ❤

 

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

Participation in a Research Study on Embouchure Dystonia - University of Washington - St. Louis

I don't know why I forgot to post this ages ago! I was flown out to St. Louis on January 3rd, 2018 to participate in a research study on embouchure dystonia conducted at the University of Washington St. Louis, by Aimee Morris and neurologist Dr. Joel Perlmutter.

The Dystonia Coalition team also happened to be there conducting research, so they took blood samples and videos of my playing to archive!

While in St. Louis, I was happy to visit my friend/mentor/horn player Thomas Jostlein who is the associate Principal Horn of the St. Louis Symphony, and speak with another horn player about the subject of embouchure dystonia.

Even though it wasn't a vacation, I really enjoyed the time away from Denver. I really needed the trip away. The photo above is a view from the hotel room. I spent most of the night sitting next to the window, eating an awesome dinner, looking out at the scene of the arch with all the city lights. I listened a podcast interviewing Marty Hackleman who discusses near the end of the interview his recent diagnosis of embouchure dystonia. I also started reading a hefty pile of  books (photo below) I checked out from the library before I left Denver.

I can't tell you how relieving it was to talk to Dr. Perlmutter and ask him all kinds of questions I had, such as why Deep Brain Stimulation (DBS) surgery isn't allowed on musician's with embouchure dystonia in particular in the United States, when it is quickly gaining a reputation for curing musician's with hand dystonia...or even the use of Transcranial Direct Current Stimulation (TMS). Forgive me for not explaining the jargon well or things more thoroughly, as it is sometimes all greek to me as well. He was explaining to me how the brain registers musician's dystonia in both hemispheres and why it is not as easy to target the exact location during surgery as it is when conducting surgery for Essential Tremors which can be pinpointed. It's another reason why the experimental surgery on musicians is not approved in the United States. Most of the research using DBS and/or TMS is being conducted on more life-threatening forms of neurological disorders.

It was relieving to also work with Aimee Morris as she is also a french horn player who has experienced a physical setback in the past; Bell's Palsy. She is passionate about her research, and did a fantastic job of organizing everything from booking my flight, hotel, transportation, itinerary, and meals. Dr. Perlmutter performed neurological tests, and Aimee did the fMRI imaging on my brain, and conducted the playing tests/recordings, and the questionnaire.

Here is an image of my brain I was able to take home with me. Sorry for the blurriness, as I took a picture of it from my phone. It's not often you get to see images of your own brain up close.

It was a whirlwind day of tests, blood samples, questions, playing, recording, trying to not fall asleep in the fMRI machine for an hour, and video taping, that I can't remember all the details, nor do I understand exactly how all of this was measured even though the research article explains it below.

I just know I was ecstatic to be contributing to the research as a patient, and so proud and happy to see more neurologists within the United States becoming interested in contributing to the research being done on not only musician's dystonia, but in particular embouchure dystonia, which we don't have as much research on as hand dystonia.

Thomas was also interested in contributing, so he participated as a non-dystonic horn player to the study later on. Which moved me and made me really happy hearing he did that!

Anyways! Here is the link to the research publication on NCBI. You will need a subscription to read it. I wish I could give a huge thank you to Aimee, Dr. Perlmutter and the rest of the research team. I know I'm not the only musician involved, but it meant a lot to finally participate. It makes me feel like I did something important to help further the efforts and information on the disorder somehow.

Quantitative, Clinically Relevant Acoustic Measurements of Focal Embouchure Dystonia - Morris, A.E; Norris, S.A.; Perlmutter, J.S.; Mink, JW

Although the photos below are unrelated, I wanted to add them here, since...why not!....there's already a photo of my brain above. Why not throw in a couple x-ray shots of my face since we're getting up close and personal. These are from my neuro-dentistry exams conducted in late 2014. Again, not the greatest quality because I took them on my phone.

New Website! - Focal Embouchure Dystonia

I finally designed a website to link to my blog thanks to a friend recently advising me to do so. I still have a lot more work to do on it, but maybe this will help me reach my advocacy goals and spread more awareness, and provide guidance. Thank you to those who take the time to check it out!

I'm also in the process of updating my blog and rewriting important blog posts, editing, and adding new sections. Thank you for your patience as I go through the process of cleaning house on my blog.

- Katie

https://www.focalembouchuredystonia.com/

New Facebook Group and Forum for Musicians with Dystonia

Hi everyone! Just wanted to chime in and share 2 new groups/forums I created for musicians with dystonia on facebook! ....

• Musicians with Focal Dystonia & Neurologist Sharing Knowledge and Resources
    ......This group is for Musicians with FD and Neurologists. The group is focused on scientific-based knowledge, resources, case-studies, and to share personal trial/error done through scientific method of documentation and observation. This is not an emotional group or a place to advertise; no tolerating emotional lashing out or soliciting of cures (or the source of FD) without proper documentation, publication, and that it can be successfully applied to all.
  
  
• Musicians with Focal Dystonia Emotional Support Group
  ........This group is for Musicians with FD, and focuses on leaning on each other and connecting with others who share the same struggle of coping with this disorder. Here we share our progress, relapses, and personal journey.
  
  Hoping that these groups will provide additional support, connections, and resources! :-)