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Patient with rarest movement disorder gets new lease of life

New Delhi: Mr Narendra Bisht suffering from a rare condition called dystonic storm successfully operated at Artemis Hospital. The patient had been suffering from cervical dystonia for the past 15 months and was admitted in a critical condition with body movements getting uncontrolled.

“He was admitted in the ICU in a very critical condition known as status dystonicus which is very rare but potentially a life threatening movement disorder. After consulting many specialists and hospitals, he was referred to us by doctors at AIIMS. The movements had severed and hence the patient had to be kept on very high doses of sedation to control the movements. In fact a breathing tube was put to compensate for the big doses and stop his movements totally. Even after keeping him on mechanical ventilators for 5 days, medications were not able to totally control the movements and hence the team decided to use the next treatment available.” Said Dr Aditya Gupta, Director,Neurosurgery, Agrim institute for neuro sciences, Artemis Hospital

While he was admitted in the emergency, it was observed that the patient lost his bladder control, developed urinal infection and pneumonia which had to be subsided before the surgery. The drugs and injections given in ICU kept him in almost an unconscious state. Once his condition had stabilized, he was decannulized and prepared for surgery.    

 “The team decided to perform Deep Brain Stimulation surgery which is like a pacemaker for the brain. He was surgically operated to insert set of wires in the brain that connects with the pacemaker set in the collarbone beneath the skin. It was surprising and astonishing for the team to see a speedy response to DBS with such severe condition of dystonia. The patient showed a very good response and his movements started subsiding and he was able to be shifted out of the ICU immediately. The physiotherapist started making him sit and take food on his own, started walking and with these results we are very very happy with the progress and improvement of Mr Bisht.” Said Dr Sumit Singh, Director, Neurology, Agrim institute of neuro sciences, Artemis Hospital

The patient had severe dystonic storm, which is very rare and complicated. Patients with such conditions have a very bizarre posturing of extremities in body. They have extreme pain and their entire body feels twisted and turned. Such levels of extremities are developed with time if left untreated in early stages and the condition further worsens with body movements that lasts even upto 24 hours a day.

“He had a very rare disease which is called primary generalized dystonia. He had been suffering from this disease for the past 2-3 years and had been consulting various hospitals, neurologists and movement disorder specialist but the dystonic movements could not be controlled. His uncontrolled movements were totally unmanageable at home and we had almost lost hope. But post surgery, my husband has recovered well and is now as normal as always. I am really thankful to the team of doctors.” Said Ms Sangeeta Bisht, patient’s wife.

DBS is a surgery routinely done for dystonia patients but patients with status dystonicus, not many go into DBS straight away. It was surprising and astonishing to see that the very next day after surgery; Mr Bisht was able to lie normally without any injections or sedatives to make him sleepy. It was a very very rewarding and happy moment for us to see such an excellent response to DBS in such a patient within 2-3 days. Normally such responses are expected in dystonia patients in 3-6 months time.

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