Objective This study aimed to characterize the phenotypic spectrum and therapeutic outcomes of patients of Indian and Asian origin with DYT-TOR1A.
Methods A retrospective chart review of patients with genetically confirmed DYT-TOR1A (c.907_909delGAG; p.Glu303del variant) from a tertiary care center in India.
Results Twelve patients (11 males, 91.7%) with a median age at disease onset of 10.5 years (range, 8–17 years) and a disease duration of 5 years (range, 2 months–31 years) were included. All patients had an isolated and progressive dystonia phenotype. Eight patients (66.7%) had a disease onset in childhood, and limb involvement at disease onset was noted in 10 (83.3%) patients. Five patients (41.7%) underwent bilateral globus pallidus internus deep brain stimulation within a median duration of 4 years (range, 2.5–6.5 years) from onset, with significant improvement.
Conclusion This Indian patient cohort showed a strong male predominance and consistent early involvement of the upper limbs. A shorter disease course accompanied by greater severity highlights the need for early recognition and potential surgical intervention.
Objective Willingness to undergo deep brain stimulation (DBS) among patients with Parkinson’s disease (PD) and their overall satisfaction with the procedure is highly dependent upon expectations, which are based on the core concepts of knowledge, attitude and perceptions. The present study aims to evaluate these factors in patients and caregivers with PD from a single tertiary care hospital in India.
Methods A structured questionnaire designed to assess the knowledge, attitude and perceptions about DBS in PD was administered to 400 patients with PD and their caregivers.
Results A very small proportion of patients and caregivers were aware of DBS. Even those who claimed to be aware of DBS were inadequately informed and had incorrect knowledge, which led to wrong attitudes and perceptions.
Conclusion There are very significant knowledge gaps and misconceptions regarding DBS among patients with PD and caregivers. Adequate and appropriate education is necessary to clarify these misconceptions to avoid the development of unrealistic expectations and poor satisfaction.
Citations
Citations to this article as recorded by
Knowledge and practice of deep brain stimulation among pediatric neurology residents in Saudi Arabia Hanin Jaber Algethami, Munirah Hamdan Alkhrisi, Sara Ayed Alanazi, Ruba Abdelmoaty Journal of Medicine and Life.2025; 18(2): 140. CrossRef
Exploring deep brain stimulation willingness in Black individuals with Parkinson’s disease Chiamaka Onuigbo, Chantale Branson Equity Neuroscience.2025; 1(2): 100012. CrossRef
Knowledge of Parkinson's Disease, Perceptions of Deep Brain Stimulation, and Attitudes Toward Its Use Among Patients in Morocco: A Cross-Sectional Study Mohamed Daghi, Abdelhakim Lakhdar, Hicham El Otmani Journal of Patient Experience.2025;[Epub] CrossRef
Know DBS: patient perceptions and knowledge of deep brain stimulation in Parkinson’s disease Meagen Salinas, Umar Yazdani, Austin Oblack, Bradley McDaniels, Nida Ahmed, Bilal Haque, Nader Pouratian, Shilpa Chitnis Therapeutic Advances in Neurological Disorders.2024;[Epub] CrossRef
Public Perception and Value of Functional Neurosurgery in Saudi Arabia: A Cross-sectional Survey Abdulsalam Mohammed Aleid, Aseel Abdullah Alahmari, Nouf Faris Alanazi, Montadhar M. Almohammedsaleh, Nawaf Y. Al Qasim, Awn A. Alessa, Abdulmonem A. Alhussain, Reem Sayeb AlAtrash, Abdulmajeed Abdulaziz Aljabr, Sami F. Almalki Journal of Advanced Trends in Medical Research.2024; 1(2): 728. CrossRef
Assessment of Knowledge and Perception Regarding Deep Brain Stimulation Among Medical Students in Saudi Arabia Sarah S Aldharman, Fadi A Munhish, Haila A Alabssi, Maryam A Alamer, Fay A Althunayyan, Majidah H Halawi, Shireen H Elfaham, Taghreed A Alsinani, Saud A Alnaaim Cureus.2023;[Epub] CrossRef
Deep Brain Stimulation for Parkinson's Disease‐the Developing World's Perspective Khushboo Patel, Divya Kalikavil Puthanveedu, Asish Vijayaraghavan, Krishnakumar Kesavapisharady, Gangadhara Sarma, Sankara P. Sarma, Syam Krishnan Movement Disorders Clinical Practice.2023; 10(12): 1750. CrossRef
How Parkinson’s patients in the USA perceive deep brain stimulation in the 21st century: Results of a nationwide survey Daniel Alfonso, Laura Y. Cabrera, Christos Sidiropoulos, Fei Wang, Harini Sarva Journal of Clinical Neuroscience.2022; 95: 20. CrossRef
Caregiver Burden in Partners of Parkinsonian Patients with Deep Brain Stimulation Eileen Gülke, Monika Pötter-Nerger Brain Sciences.2022; 12(2): 238. CrossRef
Objective The novel coronavirus disease (COVID-19) pandemic and public health measures to control it have resulted in unique challenges in the management of patients with deep brain stimulation (DBS). We report our experience with the management of acute worsening of symptoms due to battery exhaustion in 3 patients with DBS.
Methods Patients with DBS for movement disorders who visited the emergency room due to battery exhaustion during the nationwide lockdown from April to May 2020 were included.
Results Two patients with subthalamic nucleus-DBS for Parkinson’s disease (PD) and one with globus pallidus interna-DBS for generalized dystonia presented with acute worsening of symptoms due to battery exhaustion. Urgent battery replacement was performed in both patients with PD. The patient with generalized dystonia was managed with medication adjustment as he chose to defer battery replacement.
Conclusion DBS battery replacement can be an emergency. Decisions regarding DBS battery replacement should be individualized during this COVID-19 pandemic.
Citations
Citations to this article as recorded by
Parkinsonism‐Hyperpyrexia Syndrome Following Deep Brain Stimulation Battery Depletion during the COVID‐19 Pandemic: A Case Series and Review of the Literature Seyed Amir Hassan Habibi, Negin Eissazade, Tayebe Lotfi, Mansour Parvaresh‐Rizi, Gholamali Shahidi, Mohammad Rohani Movement Disorders Clinical Practice.2026; 13(1): 248. CrossRef
Deep brain stimulation within a multi-center US-based healthcare system – A descriptive epidemiologic review from 2010 through 2021 Mark F. Sedrak, Richard N. Chang, Patrick Pezeshkian, Chelsea E. Reyes, Heather A. Prentice, Elizabeth W. Paxton, Monica A. Skordilis, Patrick T. Hickey, Siddharth Srivastava, Ross Anderson Journal of Clinical Neuroscience.2025; 139: 111428. CrossRef
Lessons learned during COVID-19 pandemic, a worldwide survey: evolution of global neurosurgical practice Harsh DEORA, Amol RAHEJA, Shashwat MISHRA, Vivek TANDON, Edoardo AGOSTI, Pierlorenzo VEICESCHI, Kanwaljeet GARG, Vikas NAIK, Shweta KEDIA, Rajesh MEENA, Satya S. MUNJAL, Bipin CHAURASIA, Jack WELLINGTON, Davide LOCATELLI, Marco M. FONTANELLA, Manmohan SIN Journal of Neurosurgical Sciences.2024;[Epub] CrossRef
Akinetic crisis and withdrawal syndromes: guideline “Parkinson’s disease” of the German Society of Neurology Monika Pötter-Nerger, Matthias Löhle, Günter Höglinger Journal of Neurology.2024; 271(10): 6485. CrossRef
Deep Brain Stimulation Withdrawal Syndrome, a Rare Life-Threatening Condition in Neurology and Neurosurgery Ekaterina V. Bril, Alexey A. Tomskiy, Anna A. Gamaleya, Anna A. Poddubskaya, Dmytriy G. Kesarev, Natalia V. Fedorova Annals of Clinical and Experimental Neurology.2024; 18(3): 91. CrossRef
Effects of COVID-19 on Synaptic and Neuronal Degeneration Mohammed S. Alqahtani, Mohamed Abbas, Mohammad Y. Alshahrani, Khulud Alabdullh, Amjad Alqarni, Fawaz F. Alqahtani, Layal K. Jambi, Adnan Alkhayat Brain Sciences.2023; 13(1): 131. CrossRef
Needs and Perceptions of Patients With Dystonia During the COVID-19 Pandemic: A Qualitative Framework Analysis of Survey Responses From Italy Vittorio Rispoli, Matías Eduardo Díaz Crescitelli, Francesco Cavallieri, Francesca Antonelli, Stefano Meletti, Luca Ghirotto, Franco Valzania Frontiers in Neurology.2022;[Epub] CrossRef
Movement Disorder Emergencies Ishita Desai, Niraj Kumar Annals of Indian Academy of Neurology.2022; 25(5): 801. CrossRef
Spectrum of Movement Disorder Emergencies in a Tertiary Care Center in India Abhishek P. Bhoyar, Rohan Mahale, Nitish Kamble, Vikram Holla, Pramod Kumar Pal, Ravi Yadav Annals of Indian Academy of Neurology.2022; 25(5): 890. CrossRef
Parkinsonism hyperpyraexia syndrome in Parkinson's disease patients undergoing deep brain stimulation: An indirect consequence of COVID-19 lockdowns Onanong Phokaewvarangkul, Sasivimol Virameteekul, Roongroj Bhidayasiri Parkinsonism & Related Disorders.2021; 87: 39. CrossRef
An Investigation Into Miniaturised Closed-Loop DBS Devices Dean M. Corva, Scott D. Adams, Kevin E. Bennet, Parastoo Hashemi, Michael Berk, Abbas Z. Kouzani IEEE Transactions on Medical Robotics and Bionics.2021; 3(3): 671. CrossRef
Impact of COVID-19 Pandemic on Parkinson's Disease Niraj Kumar, Ravi Gupta Annals of Indian Academy of Neurology.2021; 24(2): 121. CrossRef
Effects of COVID-19 Lockdown on Movement Disorders Patients With Deep Brain Stimulation: A Multicenter Survey Carla Piano, Francesco Bove, Tommaso Tufo, Isabella Imbimbo, Danilo Genovese, Alessandro Stefani, Massimo Marano, Antonella Peppe, Livia Brusa, Rocco Cerroni, Francesco Motolese, Enrico Di Stasio, Marianna Mazza, Antonio Daniele, Alessandro Olivi, Paolo C Frontiers in Neurology.2020;[Epub] CrossRef