The big day had finally come to start programming!
They turned on the device and started bumping up the juice one milliamp at a time. They would stop whenever I felt “something”. It could be a metallic taste in mouth or a tingle in a limb; it’s different reaction for each person.
Every eye in the room was on me waiting for the reaction. No pressure, right. Well, I started to feel “something” alright. There was a searing sensation under my scalp and it increased with every milliamp. This was an unusual reaction that pumped the brakes on going any further. The burning was right at the connectors.
That’s right, the unthinkable happened!
Since I didn’t feel the burn at a lower setting, they turned it down and sent me home to acclimate and hopefully make some progress. People with dystonia gain benefit over time, it’s not something that gets better instantly.
I was scheduled for an exploratory surgery. They wanted me awake when they checked the connectors and tried more programming to see if they fixed it before they stapled me back up.
I started feeling a terrible burning at the battery too. It just got worse and after three days I had to turn the system off.
Me Myself and My Dystonia 