Jewish Health

M - Interview 19

Male
Age at interview: 39
Age at diagnosis: 16

Brief outline: M was diagnosed with torsion dystonia at 16, five years after developing an unusual gait. As treatment M underwent Deep Brain Simulation, which initially was not successful. With a second opinion, the electrodes were repositioned resulting in more success.

Background: M is married with one child and is self-employed. Ethnic background/nationality: Jewish

Audio & video

M began to walk with an unusual gait at the age of 11. He underwent orthopaedic surgery before being sent to see a neurologist a few years later. His condition gradually worsened, spreading from his right foot to his right arm. M travelled to the UK from Israel to see a well known neurologist who diagnosed him with torsion dystonia at the age of 16. M was surprised about the delay in diagnosis because of the presentation of his symptoms and because the condition is more prevalent among the Ashkenazi Jewish population. At the time of diagnosis M was told that the condition would steadily deteriorate and there was no cure.
 
For twenty years, M tried various medications which were largely ineffective. He served in the Israeli army, went to university, got married and had a son. He found the condition more challenging outside of the Kibbutz in which he had grown up because his walk was so different and became progressively worse. By his thirties, he describes it as a jellyfish trying to walk and he attracted a lot of stares when out in public.
 
He heard about a new treatment – Deep Brain Stimulation – and was considered a good candidate by the neurosurgeon because his gait was having a significant effect on his everyday life and his particular type of Dystonia (DYT1) was known to respond well to surgery. The operation involved attaching electrodes to a particular part of the brain, connected to a pacemaker which constantly stimulates the brain, masking the effect of the condition. The operation was not successful and after a year and a half, and having returned to the surgeon to check the positioning of the electrodes, M sought a second opinion. The second neurologist found that the electrodes were wrongly positioned and M underwent a second operation to remove them and reposition new electrodes. This operation was successful.
 
Within two days M could walk more easily and it was “like someone put a wet blanket over the source of noise; an amazing peaceful experience”. Since then, the electrodes have been finely tuned to balance reducing the effects of the condition while not affecting his speech too much. M describes the transformation he has experienced as “mind blowingly positive” although he would have liked some accountability on the part of the first surgeon.

M is the youngest of four siblings and, at the time of the condition onset, was the only known case of Dystonia in his extended family. Many years later, M’s oldest brother (in his 40s) developed a mild form of generalised Dystonia. 

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