Abstract

There is no available data on the journey of dystonia patients once referred to a tertiary center to undergo deep brain stimulation (DBS). We hypothesized that some patients might be incorrectly diagnosed while others might decline the procedure or experience significant benefit with switching to a different botulinum neurotoxin (BoNT). This is a single-center, retrospective study of dystonia patients who were referred to the DBS program between January 2014 and December 2018. We collected data on the surgical decision as well as factors influencing this decision. Sixty-seven patients were included (30 males, mean age: 48.3 ± 20.1 years, disease duration: 16.9 ± 15.3 years). Thirty-three (49%) patients underwent DBS. Four (6%) patients were awaiting the procedure while the remaining 30 patients (45%) did not undergo DBS. Reasons for DBS decline were patient refusal (17, 53%), functional dystonia (6, 20%), and successful use of AbobotulinumtoxinA (3, 10%) in patients who had failed other BoNTs. Our study highlights the importance of structured patient education to increase acceptance of DBS, as well as careful patient evaluation, particularly with respect to functional dystonia. Finally, changing BoNT formulation might be beneficial in some patients.

Highlights

  • Dystonia is characterized by abnormal, often repetitive movements and/or postures that are caused by sustained or intermittent muscle contractions [1]

  • botulinum neurotoxin (BoNT) is the main modality of treatment in many of the focal and segmental dystonic conditions [5,6]; the development of Secondary non-response (SNR) can increase the need to refer these patients to more invasive treatments as deep brain stimulation (DBS)

  • We identified a total of six patients who were referred for DBS consideration and were diagnosed with functional dystonia

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Summary

Introduction

Dystonia is characterized by abnormal, often repetitive movements and/or postures that are caused by sustained or intermittent muscle contractions [1]. There is no available data on the journey of these patients once referred to a tertiary center to undergo deep brain stimulation (DBS). It is unknown what the proportion of patients eventually receiving surgery is and the reasons for exclusion, similar studies have been carried out in other DBS indications such as Parkinson’s disease [2]. BoNT is the main modality of treatment in many of the focal and segmental dystonic conditions [5,6]; the development of SNR can increase the need to refer these patients to more invasive treatments as DBS

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