Report from the 4th International Congress on Treatment of Dystonia

Just about two weeks ago, I had the pleasure to participate and present at the 4th International Congress on Treatment of Dystonia. As the title suggests, the event was not exclusively focused on Musician’s Focal Dystonia, but on all types of the movement disorder. However, thanks to the fact that one of three organising neurologists was Eckhardt Altenmüller, there were workshops and session dedicated entirely to MFD.

(I’m sure many of us are familiar with his name, but for those who are not: Prof. Altenmüller conducted excessive research on MFD in the past 30 years, treating over a thousand musicians.)

The entire conference was a very informative and interesting experience, and obviously, I cannot share all of it, but I decided to report the key points I have found most important.

Firstly, researchers start to form the idea that MFD is not one disorder, but several different ones which all result in similar symptoms. This distinction is not based on the body part where the symptom happens (in other words, these newly forming groups are not ‘finger dystonia’, ‘embouchure dystonia’ etc.), but on the possible triggering factors, plus, how patients react to different treatment. Some people seem to have a positive family history – at least one relative with any type of dystonia – but others don’t. Some seem to have very strong psychological symptoms before the onset, like anxiety or depression, others don’t. On the other hand, about 1/3 of the patients react positively to oral medications, and the rest not at all, and retraining seems to go quicker and smoother for some individuals. All this suggest that MFD could be an umbrella term including different problems which need different therapies. We need much more research to understand more about these categories, and how to address this diversity within the treatment.

Also, there were plenty of lectures and sessions about the use of botulinum toxin (Botox) injections, especially since it is still the most frequently used treatment in all non-task specific dystonias. Much of the information shared on these lectures did not relate to MFD at all, but there were two very interesting points I would like to talk about.

The first: Botox is a symptomatic treatment. It is not s neuromodulator, in other words, it is not going to change the brain, where our problem lies. The only thing it does is to “turn off” the overactive muscle, on a muscular level. This means that the signals from the brain to the muscle are still running, but the muscle is unable to react to it. The only way it can lead to some form of change if it is combined with behavioral therapy. Behavioural therapy can use the absence of the tension to retrain movements, and by repetition, influence the neuroplasticity of the brain, but the Botox alone is seldom helpful.

The second: pharmaceutical companies and most neurologist claim that the effect of Botox is temporary. They, in fact, suggest repeating the injection every 3-4 months for the full benefit. According to neurologists I talked to, who frequently inject Botox, this is not exactly the case. It seems that the more injections the patients receive, the more likely they develop a permanent weakness. One study, which will soon be published, reported muscular atrophy and decreased strength in musicians after injections. Eckhardt Altenmüller said in one of his workshops that he injects less and less, carefully picking the cases where it makes sense – where the dystonic pattern is simple, clearly affecting one or very few muscles.

The last topic I picked for this review is very close to my own work. I was happy to hear that researchers are more and more open to view the problem in a more holistic way, taking many possible triggering and contributing factors into account. Research is being done on the environmental factors, behaviors, practice patterns and personality traits of the musicians, producing some very interesting findings. As an example, musicians with anxiety, perfectionist and obsessive tendencies are six times more likely to have dystonia. Also, those with psychological problems tend to suffer from the onset 10 years earlier on average than their counterparts. Also, the role of the focus of attention is discussed increasingly, both in relation to the onset and the rehabilitation (I have discussed the matter already here). Others are interested in the effect of trauma and dealing with life-changing events, and the role of music educations in the development of MFD. It seems that the causes are very diverse, therefore the treatment has to be flexible to meet these different needs.

The research I’m doing as a Ph.D. student also aims to fill these gaps in our knowledge. I have presented a poster with the reports of my first two studies (one finished, one still ongoing). Once the research is fully done, I will write a detailed post about my findings.

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