Myoclonic Dystonia Treatment in India

Aditya Kumar, a 28-year-old software engineer...

Aditya Kumar, a 28-year-old software engineer from Bangalore, had always been a talented classical tabla player. Over the past three years, he developed sudden, violent jerks in his right arm and shoulder, especially when he tried to play music or type code. The movements were embarrassing and made his passion and profession nearly impossible. After seeing a general physician and a rheumatologist, he was referred to a neurologist. The neurologist diagnosed him with Myoclonic Dystonia after a detailed clinical exam and genetic testing confirmed a mutation in the SGCE gene. The doctor recommended a trial of deep brain stimulation (DBS) surgery, as Aditya's symptoms were severe and poorly controlled by medications like clonazepam, which made him too drowsy to work. The treatment experience was daunting; the idea of brain surgery was terrifying. However, the surgical team was supportive. After the DBS system was implanted and programmed, Aditya spent a week in the hospital. In the months of recovery and fine-tuning that followed, the jerks reduced by over 80%. He can now play the tabla again, though with some caution, and his typing speed has returned. Emotionally, he journeyed from a state of despair and identity loss, feeling like a shadow of his former self, to one of cautious optimism and regained confidence. He still has bad days, but he feels back in control of his life.