Back from the first surgery

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.



  1. John – it’s great to see you and your blog back “on the air”. Get well soon and go easy on the New China fried rice and Mai Tai’s. Also, considering your weepiness, stay away from “Oprah”.

  2. Glad to see you are back to posting! Must say you’ve been on my thoughts, and I’m sure a lot of other folks’ too, for the past few weeks. I’ll be pulling for you again this Wed. đŸ˜‰

  3. John, I’ve got a new meditation cushion I need to try out. So I’ll be doing 15 minutes of tonglen for you this Tuesday and Wednesday. Good luck!

  4. Wow John! Your day of surgery sounded like the stuff that happened at my old house parties (I’m sure you remember those)! Seriously, it is so good to get your update. Winnie and I will be thinking of you – and looking forward to seeing you – as you continue with things. The next time you start getting weepy, just pop-in some BD Stevens. . .

  5. John,
    well there is no way that that experience was not very difficult even though the outcome will probably be good and really crying seems like about the sanest response I can think of. so one down and probably the hardest in some ways. We have been watching nothing but depressing movies of late (by mistake) so I can’t think of a good one to recommend except maybe The Producers. love ya and thinking of you — the spring will be really sweet this year. katy

  6. Hey John, It’s your cousin Brittany, Margie’s daughter! Your mom sent me the link to your blogs the other day. Miki and Betty had told my mom some things that were going on, nothing in detail like this though. That is so CRAZY!! I think its awesome though! You are truly an amazing person! You are always in our thoughts and prayers!
    We Love You!

  7. Hi John:
    Steve was kind enough to fill me in.. I am very happy your surgery went well and am hoping the best for an effective therapy. Perhaps we can reconnect when your feeling well enough to grab a glass of suds. Stay in touch!

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