Saturday, July 4, 2009

DBS Stream of Consciousness (Updated)

1.) Peter leads his handlers in a chorus of "I like New York in June."

Photos by Pam Dunlap-Shohl © 2009

June 30th, 5:30 a.m. Concrete gray San Francisco sky. Off my meds, mince to curb. Cram into cab with my handlers, Pam, Yvonne, and Wiley. Cabbie talkative, asks if we saw the gay pride parade "All those hairy asses." Pam won't let his scorn go unchallenged, "To each his own, I say" she replies. Myself, I think the parade missed a big opportunity by not having people in fezzes driving tiny cars around, but found it on the whole to have the same level of gravitas one expects at any parade. And it was certainly a good call to leave the military gear home. Don't ask, don't tell. We arrive at the hospital atop the hill, report to adult surgery and in walks Irish Annie, all business and brogue, she takes our information and when we tell her why we're there and who will do the honors, she is pleased "Ahh, she says, "The wonderful Dr. Starr" which is as good a way as any to kick off brain surgery.

2.) Be prepared for lots of paperwork

Just a few more forms to fill out before the drilling begins... The wonderful Dr. Starr offers yet another piece of paper, says "This one is in case you have any moral objection to a blood transfusion, should you need one." I reply that I have a moral objection to NOT having one, should I need it. "That would be my position." says Dr. Starr. Then, just because everybody makes mistakes sometimes, he produces a sterile sharpie marker and inscribes an "X" on either side of my temple to remind him where the drill goes in.

3.) X marks the spot, except the real spot is hidden by my full, luxuriant hair. So in this case X is just a reminder that they are supposed to drill around here somewhere.

And now it's time to meet the "halo" a dense metal basket that looks like a relic of some medieval dungeon, except with Velcro straps. The Versed, or as the medical staff like to refer to it "The good stuff" hits and... do I care that the Iron Maiden is being screwed to my skull? No, I do not.

4.) Less scary than it looks, especially when you're doped to the gills on "The good stuff."

I also do not care that I miss the part where the drill chews through my skull.

5.) Less scary than it looks, especially if you don't look at it. (Picture by Monica Volz)

But as the lead nears the target portion of my brain they must wake me to gauge my response to stimulation. The doctors have a sort of map to guide them, a composite MRI and CT scan, but they are also listening for the sounds generated by this part of the brain to let them know they are in the right neighborhood.

6.) The lower half of the graph above represents the electrcal activity of a single neuron. Courtesy of UCSF

Curious, I listen too. Am somewhat disappointed that the sound is much like static on the radio. But maybe that sound is more than we know, flick on your radio and perhaps what you hear as static is really the firing of the neurons in the deep brain of God. Oh wow. Hey, this Versed IS good stuff... Now that I'm awake, Dr. Starr puts me through some simple tasks and manipulates my forearms and wrists with abrupt precise movements. The anesthesiologist asks how I am doing. I confess that my butt feels like it is on hour 15 of a 14 hour flight. The entire process is repeated for the right side of my brain then followed by a short set of tests to help Dr. Starr with some research he is working on, and then it's back to sleep.

7.) The most dramatic thing you will ever nap through.

I wake in my hospital room, Mary Kay, Dan and Steve are soon ushered in, my dinner is also ushered in, and I destroy it with gusto. Best damn penne I ever ate. I feel bad eating in front of visitors, but not bad enough to stop. In fact I'm so hungry, I ask for another round. My room is shared with an older woman with breathing difficulty. We are never introduced, but separated only by a curtain, and with our defenses down we become intimate with each other's pain. She is in for a long night, as the staff must insert a catheter, this seems to take hours. I feel sympathy as I am catheterized, too, and not looking forward to the thing coming out. At some point during the next few hours the powers that be decide to go beyond fiddling with the catheter and mysteriously replace the entire patient. What became of her I have no clue. The new guy is obviously familiar with hospital routines, seems to have breathing troubles as well. My nurse Raisa, is not surprised to find me ready to check out the second morning, dressed and eager to get back to my family.


Unknown said...

Thanks for sharing your experience with the DBS surgery. It brings back memories of the surgeries my Dad has had. I wish you the best success with the recovery process and with the finding the right frequency!

Peter Dunlap-Shohl said...

Thanks Jacqueline, Parkinson's may be slow, but I've never found it boring. I hope your father is coping well.


Tom in Nashville said...

Thanks for sharing the photos, Peter.

It never occurred to me to take any, as I was so wrapped up in the surgery.

The was quite a difference in approach in the few years between your surgery & mine. No more Iron Maiden mask (it looked like a torture device to me anyway).

For my surgery, I have 4 bolts attached to my skull in a short outpatient visit. They used the pre-operative scans to make a plastic template that had to "drill here" holes marked it fit over the bolts so that it wouldn't move.

The surgeon did a great job of hiding the scars. Some of the ones people have posted are shocking to me. The surgeon cut across my scalp in one incision, pealed it back, drilled the holes & ran the "cord" under my skin & down my neck. When he capped the holes & pulled the scalp back up, there was only one incision to stitch. He pulled it forward enough to suture on the inside of the incision, so when he pulled it tight, you could hardly see it. Add self-dissolving sutures, and it's hardly visible.

It was supposed to be under the front of my hairline, which would be ideal if I had any hair.

I will post a pic or 2 from the top of my head so that the group can see. The only thing I can see is the 2 bumps over the caps.

Peter Dunlap-Shohl said...

There seem to be any number of ways to skin this cat. The "Iron Maiden" looked formidable, but thanks to my blase disposition, and, truth be told, to well-administered pain medication, trauma was negligible.

For those considering DBS, this is the value of an experienced team. You get the benefit of all the suffering of those that have gone before and educated the medical staff about what works and what doesn't.

My surgeon has done over 1000 of these procedures, and could probably perform the operation in his sleep. Which is a good thing, as he is a new papa!