epiphanatic » 2007» November

Posted on 11.17.07 by jstoner @ 6:19 pm

I am back at my place… laying comfortably on my couch, typing away, enjoying the smell of rice cooking in my own kitchen. Mom is a better cook than I, and I’ve enjoyed her cooking and care the last few weeks, but it’s nice to be in my own place.

I’m not planning to go back to work till the week after Thanksgiving. The following Friday (the 30th) is the next surgery–we start work on the right side. Then Tuesday after that (12/4) we finish that up, implanting the generator on the right. They want me to come in that Monday to test my current hardware.

This should be significantly easier than the last time. They drilled both holes last time, so no new skull holes. They think I should have some amount of anatomical symmetry, so they should be able to poke the same locations they found before and get some results. It’s reasonable to hope that this will go much more smoothly than last time.

After that we begin starting up and tuning the system. Fingers crossed: that’s where the payoff for all this really starts. Like I said, one step at a time.

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the second surgery

Posted on 11.09.07 by jstoner @ 7:21 pm

Went pretty smoothly. They implanted my left generator (the pacemaker device.) I was completely out.

I was eating as normally as you can eat in a hospital later that day. No puking! Yay. I seem to have good range of motion–I’ve heard some people complain that their wires pull. I feel mine, but they don’t get in the way. I’m in a small amount of pain. They gave me vicodin. I’m back to Tylenol at this point.

I’m just taking it easy for now. Next we get the remaining staples yanked, and turn on the generator. Or, you know, pretend to turn it on.

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Back from the first surgery

Posted on 11.04.07 by jstoner @ 11:58 am

I lived. I’m ok. I have a new incision on my head, and a bunch of pretty staples in my shaved scalp. Very Frankenstein. One new wire in my brain. I’m at my parent’s house. My sister drove out from Virginia to be here. They’ve been great.

No, that’s not according to plan. Here’s the rundown:

Our appointment was at 6:30am. Got there at 7 thanks to a no-show cab from American United Cab Service. Got there at all thanks to a cab from Yellow Taxi.

My Zen teacher met us at the hospital. I went in, went through the admissions process. Met the anesthesiologist. After that my memory gets fuzzy.

The first time I ever had a general anesthetic, I was sixteen and getting my appendix out. I remember laying on the operating table and asking ‘when are they going to do the surgery?’ they said ‘It’s done.’

There were some of those moments. Putting the halo on was one. The first MRI was another. I have a few little memories of it, but it’s mostly as though it happened outside my presence.

The surgery itself is pretty clear in my mind. The halo was a troublesome beast, a big metal contraption screwed into my skull in four places. There were some pieces they added later, after they attached me to the table. The neurosurgeon had to pound on it to get one of them in. Somewhere in that timeframe they drilled two holes in my skull. I’m happy to say that part was a non-event.

Turns out my brain is anatomically unusual. I’m sure some of you will not be surprised. The neural activity and response from my body did not match what they expected from the MRI. It took them 10 hours and 8 tries of poking around with the test probe to find an appropriate spot on the left side. They were very careful and thorough.

Each ‘poke’ was a process where someone would slowly crank a straight thin wire down into my brain tissue. As it went in, tenth of a millimeter by tenth of a millimeter, a speaker crackled with neural static. When the static got loud, we would stop the probe, and the neurologist would move and jerk my limbs around, seeming to affect an exaggerated imitation of my normal spastic motions. Sometimes the static would dip in volume, and they would make a note.

It seems like the globus pallidus is an area of the brain where vestibular sensory data is processed with outgoing motor data (perhaps for stability’s sake?) Perhaps my condition is a bad positive feedback loop in the function of that system.

On the way back out, in promising locations, they switched the probe from sense to stimulate. So they would stop along the way and zap me just a bit. One time it gave me a very odd tingle in my left foot, another time, it made my tongue pull to the right. I don’t make much of that–when they tune the signal into your brain, they don’t usually get instant results.

It was 10pm when we were done with the left probe. We were all exhausted. Needless to say, they did not do the right side. I did suffer increasing discomfort as time went on–the anesthesiologist did not prepare me for ten hours of surgery. Nor was it my sense he should have–this was highly unusual.

They closed me up, and I met my mom in the ICU. I learned a lot about what they mean by intensive care. They checked on me frequently through the night. They asked me what my name was, what my birthday was, what day it was (I got to answer Halloween), repeatedly. They gave me different drugs–morphine (not a fun drug–just made me sleepy, and made the pain go away. And made me nauseous), antibiotics, various other stuff.

Over the course of the next day, I went from morphine pain to Tylenol pain. I stayed a second night at the hospital, and the next day went back to solid food.

Now I’m at my parent’s house in Fox River Grove, eating very well, sleeping a lot, watching TV, taking pills and relaxing. I’m feeling well. A little sore, but OK. Had to watch ‘Young Frankenstein’ a couple nights ago. Listening to ‘Girl From Ipanema’ on my dad’s Mac as I type this.

If anything, my dystonia seems a little worse, probably due to the physical inactivity and stress. I’m feeling my hair grow back. Apparently my scalp is innervated from the front: their incision was a long one across the front of my scalp, crossing my hairline in four places. Behind it I’m numb, with strange moments of returning sensation. It’s hard to not feel around up there.

I’m still a little weepy, too–vulnerable to every cheesy manipulative commercial. It’s embarrassing. It’s funny how that stuff manages to get itself expressed. I’m being silly–I probably need to just go cry for a while. I tried to use some of the same things that got me through the tattoo during the surgery… it was hard to repeat.

From here out, it looks like a total of four surgeries, not two. They implanted the left stimulator this Tuesday, and the coming Wednesday, we do the left generator. Then we have to schedule the next two surgeries. They said something like 1-3 months out. January sounds like a good time to do it, after the holidays. After the new year, my employer is switching insurance carriers,which could be a source of leverage.

But yeah, I’m OK. I’m hopeful for good results with this, but I’m just trying to keep my expectations within reason, and take it one step at a time… I love what my dad said about the promise of this surgery, but his memory of me before dystonia is much clearer than mine. I’ve had this thing thirty-three years, and of all the ways I’ve dealt with it, acceptance has probably been the most important part. This is a new approach, but I’m keeping the old one too.

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The return of John

Posted on 11.03.07 by lstoner @ 12:52 pm

John’s visit is always a happy occasion, now more than ever. This trip home even more so because the DBS operation signals a first step on the return to walking without a reeling gait and speaking clearly. I don’t expect the surgeon’s handiwork to restore the abilities of that young “pre-dystonia” lad. Now we know that the realization of hope is something we can enjoy with a greater amount of expectation. Something is going to happen—Something good.

When John was graduating from high school, the affects of his dystonia were apparent. This did not deter the US Marine Corp. recruiting sargeant from dogging his steps, or John from listening to him on the phone. I caught the phone call one time and asked if John had explained his health problems. With an explanation of dystonia, the Marine lost interest. John was put out though because he felt he could make a significant contribution to “The Corp.” He was only satisfied with my actions when I explained that he could not hold a rifle in the regulation way and that all Marines need to shoot. We will never return to those days.

Betty and I have known about John’s bravery since he was a ten-year-old and endured brutal practices called “air studies” and cerebral angiograms and countless needles. We followed his judgment when he let us know he no longer wanted the drugs that interfered with his life or the strange “operations” that had such little promise of success. Judging from the response to the news of the operation on the internet, everyone now agrees with his mother and I. I must admit these are characteristics necessary to make a good Marine.

We are off on a new track now. This involves new trials, new expectations and new hopes. We are thankful for the prayers that brought John safely this far and count on them to bring him through the rest of the way.

Lloyd Stoner (John’s dad)

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