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Spasmodic Dysphonia
We have a separate website for patients with Spasmodic Dysphonia (SD).
Please visit StopSD.com for information about DBS for SD
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The first “DEBUSSY” Trial:
Our center routinely treats patients who have essential tremor (ET) with deep brain stimulation (DBS). This operation is designed to reduce their tremors. We have performed over 200 of these operations. Rarely (1-2%), patients with ET also have Spasmodic Dysphonia (SD). Over the last 20 years, we have therefore operated on several patients who had both ET and SD. The tremor in these patients were improved (as expected) but the patients also reported that their voices were improved (unexpectedly).
We have therefore studied these rare patients to discover how DBS can improve the voice of patients with spasmodic dysphonia. Our preliminary results have been published in the Journal of Neurosurgery. Click here for a link to our paper.
The “DEBUSSY” Trial then prospectively studied six patients with adductor spasmodic dysphonia. “DEBUSSY” is an acronym for Deep Brain Stimulation for Spasmodic Dysphonia (not a very good acronym but the best we could come up with). All patients had deep brain stimulation in their left thalamus and were then blinded to whether the stimulation was “on” or “off” for three months each. They completed subjective evaluations of their voice and had voice recordings after each of the three month sessions. Their recorded voice was also evaluated by two speech language pathologists who were blinded to the settings. The results showed that the DBS improved their voice both subjectively and objectively.
The trial was completed in 2020 and accepted for publication in the peer-reviewed journal Neurosurgery. Click here for a link to our paper. All patinets in the study had an improvement in their voice. On a scale measuring quality of life from 0-100 (100 being the best), the patients improved an average of 55 points. There were no complications or adverse events.
Funding for Study:
This study was generously funded by the following peer-reviewed granting agencies: the National Spasmodic Dysphonia Society, the Vancouver Coastal Health Research Institute, and the Rare Diseases Foundation. We are very grateful for their support of the NSDA and here is the recent newsletter describing our study:
NSDA grant
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Rational for the second “DEBUSSY” Trial:
The first DEBUSSY trial showed that DBS was safe in patients with spasmodic dysphonia and documented the degree of improvement that could be expected. The second trial will be a larger Phase II randomized control trial to prove definitively that DBS can predictably improve adductor SD. This trial will begin recruiting shortly after the protocol is published and funding secured.
The picture below is of the painting “Luncheon of the Boating Party (Le dejeuner des canotiers)” by Pierre-Auguste Renoir in 1881. It depicts a now famous scene at the Maison Fournaise restaurant. Many of Renoirs friends are in the painting including the lady depicted in the picture, Aline Charigot, whom he would marry a decade later. She did not have spasmodic dysphonia but, like many patients with the condition, she is avoiding talking to anyone in the crowd.
