epiphanatic » life

Posted on 03.26.08 by jstoner @ 11:00 pm

Went into Rush last Thursday for my most recent adjustment. It was the end of the study, they videotaped me, we ran through some questionnaires, same routine as at the start of the study. Then I got confirmation: I was in the experimental group. No surprise.

So, now I know what my settings are: the wires have four points of contact, where current can flow into my brain. The deepest one–”lead zero”–is the one with good results. I am running at .8 volts on the right side and .7 on the left. The pulse wavelength is 130 milliseconds, but they don’t mess with that. The pulse width–the interval of time during the ‘wave’ when the current is on–is 450 microseconds. I think it’s a square wave. I don’t know the amperage, I don’t think they can adjust that. I’m sure it’s a microcurrent. That deepest lead is directly above my optic nerves on both sides, but I’m not seeing any spots.

And it seems to be working. My walking and standing posture are substantially improved. My speech is distinctly better, though it might be just a bit worse since this last adjustment. My hands are a little more relaxed, though it’s a less distinct improvement. My neck is also a little less constricted, actually more spastic. I nod more, and stick my chin out when I talk. Actually that’s an improvement.

My balance is a lot better. Much more solid. I’m biking to work pretty regularly–three times this week, four if the weather cooperates Friday. I am a little tired, but it’s a good feeling. And my new layer of flab is diminishing again.

Just today I’ve noticed when I walk, the toes on my right foot curl in a bit. Not a problem per se, but something to pay attention to. And my right hand is still clenching, but a little less than before.

The other piece of good news: Medtronic is testing rechargables that are supposed to last ten years. They’re supposed to be available next year. My current ones are not rechargeable, and only last a couple years. Battery replacement is minor surgery, but still surgery.

So in a couple years when they replace my current batteries, they won’t have to replace them again till after I’m fifty. Now as long as the world doesn’t fall apart in the meantime…

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the second adustment

Posted on 01.22.08 by jstoner @ 10:07 pm

Went in for the second adjustment yesterday. Or ‘adjustment’ as the case may be. It’s still a little unclear whether I’m in the control group or not, though I suspect I am.

My left hand is a little more relaxed. My speech seems slightly better just today. I did feel some pulling in my mouth yesterday during the adjustment session, but it went away. I wonder if he turned on the juice just to be tricky. My walking is going back to the way it was before the surgery.

I really can’t wait much longer to get back on my bike again. I’ve been waiting for the weather to warm up just a bit. Friday’s Critical Mass. I may go then.

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How I am

Posted on 12.23.07 by jstoner @ 5:15 pm

I am fine. I am home, relaxing in my living room. I am mostly taking it easy.

They turned my implants on Friday. No results yet. They tested them again, and noted some side effects at higher voltages. As some may recall, I am participating in research, which means I might be in a control group. Meaning I might be getting zero voltage for the next three months. Or maybe not. Like I said before, it’s for science.

I still have a bit of extra shakiness–a little like after you fall off your bike. It’s been lingering a while. I tried to go in to work last week–made it through Wednesday, and decided I still needed more time off. So I’ve been relaxing at home.

Oh, one piece of linky goodness I found: David Byrne has a new piece in Wired covering the rearrangement of the music industry, with an eye towards new options for musicians. Fascinating to see things get to this point–you can begin to see the outlines of the future of the music industry. Really exciting and cool stuff.

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The third and fourth surgeries…

Posted on 12.11.07 by jstoner @ 9:58 pm

…are done. I am through the worst of it. And I’m OK.

So, the story: as you may recall, they were only able to implant me on the left side the first time. The week before the third surgery, I went in for a test run with the implant on the left side. The results were not so good–side effects at low voltages. Also Doctor Bakay reviewed the position of the electrode, and felt it was off by a bit, they decided that as long as they were going to be visiting the neighborhood of my brain, why not stop in on the left side?

All fine. Easier done now than later.

So I go in for the third procedure, implanting me on the right side. The first medical doctor who does anything to you in a procedure like this is the anesthesiologist. There’s this guy, a med student (Rush is a teaching hospital). I roll with it: he seems to know what he’s doing. At some point you have to get used to doctors younger than you, right? I mean, he’s fresh-faced, but he’s not a child.

He inserts the IV. He starts some of the anesthesia. I’m feeling pretty easy, but I’m not knocked out yet. He puts me in the halo, which is weird–not painful, but it’s odd feeling your skull pushed out of shape. Presumably they MRI me, again–by then I was under.

I wake up in the OR, with them poking around in my brain, first on the right, then back on the left, Dr. Verhagen manipulating me, more static, yada yada. I was comfortable until the end.

A few things happened around that time:

The familiar pain of the halo points started to come back. Oddly, it was the points in the front that seemed to bother me most this time;

Later they started stapling my scalp back together. Pulling it and stapling it together. While I was awake. Quite painfully. This was not how it went last time. At one point I asked ‘Why do I need to be awake for this?’ As in, give me a damn general already.

They gave me a local at that point, and explained that they couldn’t give me a general anesthetic. I think it was because they were switching to the left side.

At some point, they finished up there, and started stapling my scalp together in earnest. Again, quite painful. They sedated me–which is not the same thing as a general anesthetic. Their words: ‘You’ll feel it but you won’t care.’ Well, I did, quite a lot, in fact.

I made my displeasure apparent, but they kept trying to reassure me it was almost over. I don’t recall how long this went on–it certainly seemed long. It was not unbearable, but it wasn’t fun either. I had been under for this part in the previous surgery.

It was so bad, I did a bit of wrestling with the idea of a lawsuit. It’s a tricky thing–I’m a person who could easily and profitably abuse the legal system in this country. I’ve given it some thought–could be a pretty nice lifestyle. But it just seems wrong.

And this case–well, it’s close, but it really does seem to fall in-no-harm-no-foul territory. As awful as the experience was, I’m fine now. No evident injury… so I’m letting it go.

Anyway, went through that, got the usual excellent care from the nursing staff at Rush, went through the fourth surgery, to implant the battery on the right side. (Actually they went back and reimplanted a new battery on the left, too–something about wires not meeting.)

And I’m back at my parent’s place again. Getting a little stir crazy. Also a little weepy, similar to what I experienced before. Though with an edge of justification–something else to deal with.

I want to go back to my place soon. I want these damn staples out of my scalp! My appointment to get them pulled is next Tuesday. They’re tighter-spaced than they were before, and they stick out more, and more crookedly. And there are more of them… I have a row across the top of my head and a row behind and above each of my ears.

At least it’s still an even job–should heal well, probably better than I had expected from the previous surgery. I’ll have what looks like an incipient horn on the left side. On the right it should be reasonably smooth. Nothing you would notice if I didn’t point it out.
They finally turn the damn things on Friday, the 21st.

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the next steps

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 tattoo

Posted on 10.20.07 by jstoner @ 2:28 pm

So, I went into the tattoo parlor unprepared. I had two designs in mind: one Buddha from a photograph, and one image from Steven Lane’s awesome t-shirt design. I didn’t have a clear idea what a tattoo entailed. I figured it would be painful, but I didn’t really think much about it.

I also went in thinking that I couldn’t have tattoos after surgery–it was now or never. Turns out I was wrong. After getting the tattoo and finding out how long it takes to heal–whoops, the whole two weeks until surgery–I contacted Rush. Medtronics manufactures the implant. Rush contacted them, they say tattoos afterwards are OK, but they have guidelines. And I’m fine.

Steve’s design was almost ready to go–had to simplify it some, take out a few elements, but it was cartoony enough to work almost as-is. The Buddha was this photograph. It would have required substantial tweaking to make into a workable tattoo, which would not have happened before the deadline I thought I had.

Matt and I worked out the t-shirt design quickly. He expanded it a bit, he got it transferred onto my back, I got in the chair, and he got to work on me.

At first I thought, that’s not quite so painful. Then I thought, whoa, that hurts more than I was expecting. And it did. For about three hours. Other artists would walk by: ‘That’s a lot of black.’ ‘Is that your first tattoo?’ Yes, I had jumped in the deep end.

It’s interesting to watch what your mind does with that much pain. I mean, it wasn’t agony. I’ve had arthritis flareups three or four times as painful. But the amount of time spent in pain demanded something pretty mindful.

I can’t just sit there biting a bullet for three hours–I don’t think I have that much energy. But it’s the first instinct. You just want to tense up, hold your breath, grit your teeth, think about beating someone up. Resist. I did all that.

After a few moments, I started paying attention to my breath, as my years of meditation have taught me. Which helped a bit.

But then I started giving attention to the pain. Not making anything up about it, just noticing all the details of how it felt as he traced my skin with needles. It started to fill my mind. And I found I could relax into it. Get interested in it. It wasn’t the pain that was so awful, it was the resisting.

That worked for a moment. The trouble was, he would stop. And when he started again, I had to struggle back to a mindful state.

After going through this about fifty times, I looked at something else: what was the source of the resistance? Very simple fear. It was also interesting. It was much more difficult to be with than the pain. I didn’t get as far with it.

One newly-emerging spiritual capacity for me is something I want to call ‘non-discriminating mind.’ Being able to be with what’s happening right now, and appreciate it for what it is. Not to compare it with something else. Pain? OK. No pain? OK. Not that I got there that evening, but I can see it from here. Being that way on a tattoo artist’s table seems possible to me.

My Burning Man experience was the beginning of it. I had a moment of just pure appreciation of what is, being at a particular place and time, and being happy. And not caring about what I may have imagined forty would look like: this unmet goal or that disappointment.

I’m not saying it’s the place to live your whole life from. Preferring pleasure over pain is not such a bad thing. But it’s interesting to be free of that preference. And it’s not the same as not having it.

And…the results? Well, it’s not done at this writing. Though the risks are low, I figure I’m probably better off waiting till late November to finish it. And it doesn’t look bad as it is…

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the surgery–more details

Posted on 10.17.07 by jstoner @ 8:10 pm

A few things:

First, thank you. The outpouring of response and support as I face this is really beautiful. A little overwhelming, actually. And lots of “whatever you need let me know” offers. Being pathologically independent (like a lot of handicapped folks) it’s a little hard for me to think of what to do with that.

Materially, I think I have it covered. I’ll be staying out at my parent’s place for a few days after both surgeries. Otherwise, all blessings are accepted: prayer, meditation, good thoughts and wishes. Someone wanted to send me healing reiki energy… sounds great.
Fun facts:

If the surgery is successful, I may gain weight. I am forty years old, five foot eight, 135 pounds, and I can eat almost anything I want, and not gain weight. I weight about the same as I did in college. That is (at least in part) due to my condition. Excess muscle tension–that’s what dystonia is–elevates my metabolism. I’ve talked to a few folks who have gained as much as thirty pounds.

Now, I do limit my indulgence: there’s more to a healthy diet than controlling my weight. But this may entail some adjustments. I’ve never had a weight problem before. I hope I can address it more through exercise.

Also, one of the side effects of the surgery is something they call the honeymoon period–brain swelling gives some short term relief from dystonia symptoms. It’s a good sign–means they got close to the right area–but it passes. The lasting results come after the process of adjustment.

I am participating in research. This surgery is not fully approved by the FDA–they call it a ‘humanitarian exemption.’ Meaning insurance does pay for it, but you have to be part of a trial. There are two groups: the experimental group and the control group. Both get the full surgery. For the first three months, they pretend to turn on the control group’s stimulators. After the trial period, they video you, and compare with video they take before the surgery, try to isolate the placebo effect, record the results… oh, and they turn everyone’s stimulators on.

So it’s fifty-fifty: I might get the benefits of surgery right away, or I might have to wait three months. I’m OK with it… it’s for science, after all.

Infection is a whole different animal when you have foreign objects in your body, especially your brain. Especially wires going into your brain through holes in your skull–it’s like a little germ highway. So for example, if I want a tattoo, it’s now or never.

Well, it’s now. The good folks at Chicago Tattoo hooked me up, recommended by a woman named Lauren who had cool–and well done–tattoos. Went with Matt Ziolko. As of this writing, it’s not done, but I’ll post pics when it’s ready. The experience is a whole post unto itself.

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star turn: my CBF profile

Posted on 10.09.07 by jstoner @ 10:44 pm

I modeled for some promotional materials for the Chicago Bike Federation, and wrote a little piece for their site. This was edited a fair amount, but it came out fine. I’m happy to support CBF.

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