One of my favorite people from the first surgery I had was a technician who, I found out later, worked for the manufacturer of the batteries placed in my chest. He was the one who listened to the sound of my brain as they placed the wires. (He told me I have a very loud brain, which I suspected). And he sat next to me as he ran current through my brain until they knew the wires were optimally placed. I liked him because he talked to me, kept my mind on something other than pain. We discovered we share a favorite beer, Two-Hearted Ale, an IPA made in Michigan.
I met him again a week after the second surgery in my neurologist’s office. He was there to help set the levels on my batteries. There are literally hundreds of settings they can use with my batteries. As I said in an earlier post, at the end of each wire are three different points of contact with my brain. They can program each of those three ways–a positive value and negative value (like the two posts on your car battery) and voltage.
To do this, they put a strap over my shoulder with a device in it that allows the battery to talk to a handheld device that can run the different settings. They find the right settings in similarly to the way they placed the wire in the first surgery. They run current through my brain and ask me what I feel and where I feel it. Sometimes I felt nothing. Sometimes I felt momentary tingling in my leg or face. Sometimes I felt persistent tingling in my leg or face. Sometimes I felt in my hand. It took them about 45 minutes to find the right setting for each side. I had no tremors after they set my batteries!
But later, after I left the doctor’s office, I had side effects. Mostly a restless legs kind of thing, but also mild muscle twitches and spasms in my legs. I was walking strange. I felt like I was in a scene from Monty Python and the Ministry of Silly Walks. So, with my nifty little remote control I turned my batteries off and called the doctor.
When my brother found out about the remote control he asked me if it was “clap-on.” And he wanted to know if when I used the microwave did I piss my pants. (Let the reader understand). This is how I know he cares.
Anyway, the doctor had me come in the next day and we reset the devices. We originally had them set on 1.8 and 2 volts respectively. He took them down to the lowest setting–1 volt. He said that this was like some medications–your body has to get used to it. So, now we would slowly up the voltage. At one volt, I had no side effects, but my tremors were back. A few days later he raised it to 1.5 volts. I still have no side effects. The tremor in my right hand is gone, and the left hand is much better. I will have to set again in about two weeks.
My neurologist has been great. He works me into his appointment schedule, makes personal phone calls to other doctors on my behalf (I needed a neuropsych appointment before the surgery on very short notice and he got me in). He’s been very patient and attentive in setting the right levels. I’m very thankful for his care. Over the next few months we will continue to set my batteries.
So, now I’m recovering from the surgeries and enjoying significant improvement from the tremors. I have very little pain today, although my head itches like crazy and there are still places on my head that are numb. As the swelling has gone down, I can feel the wires under my scalp and one place in my neck. The batteries protrude, but my chest doesn’t hurt much anymore. I don’t have a great deal of stamina. I take a trip to the store or go out to eat and need a nap (not all that different from being 52). I’m not supposed to lift anything over ten pounds for awhile. They don’t want the wires coming away from the batteries.
My hair has grown back very fast. My bald friends were gleeful at my shaved head, but now are not speaking to me as my hair grows back. They’ll just have to get over it.
I can see normal from here. And it feels pretty great. And that includes steady hands. I marvel at what has happened to me. And while I don’t want any more surgeries for awhile, the ones I have had are worth the ordeal. Yesterday I visited the church in Gresham, OR where I preached for 11 years. And I took communion. Praise God!