Before going any further, I have to insert a disclaimer. I usually try to add some craftsmanship to my writing. Unfortunately, being a recovering perfectionist, I don't think I'll ever get this one "good enough" by my standards. So, in the interest of getting it done and out, I'm going to settle for whatever gets written. There won't be any "slow hand" artistry today. "Just the facts, ma'am." Rough Draft. Bring your red pen and draw on the screen.
And a warning: I'm brutally candid. It's medical stuff and I'm not shy or reserved. You get the truth, as much of it as I can remember. Also see the "unapologetically verbose" advisory at the right.
The Night & Morning Before
Mayo Clinic's protocol for finding out when you come in for surgery involves a phone call to an automated system the night before. Anytime after 8:15 PM, you can call their system and receive your "Report Time" when you're supposed to check-in on the day of the procedure. It was good news, and bad: I was the first neurosurgery procedure for the day, so my Report Time was 5:45 AM. I could get in early without a lot of waiting, but I'd have to get up at about 4 AM. I had stopped taking my primary Parkinson's meds Tuesday morning, so I was moving like a sloth. It was going to take me at least 30 minutes to roll through the shower and use the disinfecting HibiCleanse soap on my scalp. At least. Lynette got up at 4:45 and I was still scrubbing. Fortunately, the water heater in our hotel room wasn't running out and she got a hot shower, too.
The hotel was a short distance from the St. Mary's campus where the surgery was scheduled. Parking was easy to find given the early hour. We walked in and went straight to the front of the line, as the queue for 5:45 report time was empty. We were sent to a large lobby waiting area for a few minutes before we were called. The gentleman who escorted us and 4 or 5 other couples upstairs seemed unenthusiastic. Perhaps, like me, he lacked coffee. My changing room was the first stop. We were greeted by a small plastic wrapped package. Contents: one high-tech disposable hospital gown. It was insulated with a layer of gauze-like material with cut-out ports for blowing warm air into the garment. They like to keep pre-op and operating spaces cool to reduce growth of tiny bad things. Simultaneously proving heat AND reducing dignity with one gown? Perfect.
At this point, Einstein enters the frame of reference. Time became an illusion, a trick of light. A cruel trick, too, because before I knew it I was rolling past doorways and shadows without my wife. They took me away from her after a couple of words and a kiss. Not nearly enough.
At this point, Einstein enters the frame of reference. Time became an illusion, a trick of light. A cruel trick, too, because before I knew it I was rolling past doorways and shadows without my wife. They took me away from her after a couple of words and a kiss. Not nearly enough.
Pre-Op Prep and Waiting
Part of me was now missing, but I couldn't afford to feel it. I walled off the part of me that was howling in emotional pain and stuffed it into the same dark corner of my mind where I'd packed away my fear and doubt, and brought the ultimate defense mechanism to the surface: humor. I imagine anyone looking at me saw a calm individual who enjoyed his own jokes entirely too much. This one-man comedy show arrived in the pre-op area for more briefings and prep. I met my two new best friends: the neurosurgery nurse, Nicole, who would be with me fore the duration of the procedure, and the anesthesiologist, Luann. Nicole hooked up my space-age gown to a hot air hose to keep me comfortable, and Luann started some meds with the same general intent, plus an antibiotic. A neurosurgery resident dropped by and scribbled on my forehead with a marker. I think I was here for about 45 minutes. Around 8-ish, Nicole came back and rolled me out of pre-op.Unreal in the O.R.
The next few minutes were more corridors in the maze that comprises the St. Mary's hospital campus. As I passed too many doorways and side corridors to count, I wondered how my life would turn out if I just hopped off and walked away. Too late, I told myself as we rolled into an elevator. Going down?
I really can't recommend rolling fully conscious into your own Operating Room. There's so much to see and absorb. I rotated my head, taking it all in. I remember laughing, almost not in control of myself. "So this is where the magic happens?" I was also asking myself, "Is this happening? I'm actually doing this?"
Dr. Lee, the neurosurgeon, strolled into the O.R., full of enthusiasm and confidence. While he worked on assembling the head frame that would restrain me and guide his instruments, I made an announcement:
"I'd like to give everyone an apology for the terrible jokes and humor you're going to experience for the next few hours. Unfortunately, that would be insincere, so I won't be doing that." They laughed. What a great audience. Very kind of them to give me one last moment of feeling that I was in control of something. Well, that's not quite true. Despite the long odds, I remained in control of myself throughout the procedure. Almost. Some things a person just can't control when fluids are being pumped into the body.
Framing Things Up
The lower portion of the stereotactic frame, aka
my private chamber of terror.
Photo credit: Mayo Clinic Surgical Photographer
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- Insert some soft plugs into the ear cannals.
- Align the frame by tightening a couple of rods into the ears. Not too tight. That's still coming.
- Inject INSANE amounts of fluid into the "pin" sites. Was described by Dr. Lee as a "poke and then a little burn." Um... what?
- Tighten the "pins" to secure the frame to the skull, with near-zero possibility of slip or drift.
Parts 1 and 2 were a cake walk. One site out on the Internet describes parts 3 and 4 as follows:
The four pin sites are injected with local anesthesia to minimize discomfort. You will feel some pressure as the pins are tightened.There was nothing minimal about the discomfort. First, the "pins" are not some delicate piece of metal. They were pointy BOLTS, pure and simple. While they were torquing down the right rear bolt, I could feel the skin... well, lets just say it didn't feel cozy. I got a couple more injections back there, but it left a lot to be desired.
The stereotactic frame with the MRI Imaging "cap" attached. The triangles on the front and sides allow "simple" math to be used to build a 3D model of the brain. |
"I'm lying comfortably in the middle of the floor of a dark gymnasium." This is what I tell myself when I close my eyes just before I'm pulled into the psychological vortex of a MRI. If you've ever been in one, you know they're loud. Now imagine your head is actually bolted to the machine and you get the experience the noise through pure bone-conduction to your inner ear. It's okay though. Compared to getting the frame attached, it's another cake walk. (I wonder where all these cakes can be found after the procedure?) Then my mind starts wandering, wondering what happens if I accidentally move and a critical slice of the MRI is off by a millimeter?
"I'm lying comfortably in the middle of the floor of a dark gymnasium."
It feels like 20-30 minutes have passed when I start my journey back to the bright lights of the O.R. My body has come down from the intensity of having the
In pre-op, I had asked if it would be possible to get a photo of me with the frame on my head. Nicole reminds me of this and makes a phone call. Within a couple of minutes, some an O.R. photographer arrives, masked and ready for action. He takes a frontal and a profile shot, and goes back to his normal life. (Still waiting for said stills to be emailed to me.)
Teeing off for Hole #1
Looks fun, eh? "We know you have the codes, Herr Rigsby. Now TALK, or we'll put the screws to you!" |
About 30 or 45 minutes after the MRI was finished, more and more people start coming into the room. At one point, I count 12 of them in my peripheral vision. Dr. Lee make an appearance, announcing they're ready to start. I ask him if they found a clear path down to both STN regions. He laughs a little and assures me that they have. Another lady from the neurosurgery group introduces herself. You'll forgive my memory being a bit hazy, but everyone is masked by now (except me!) That said, I remember she's tall and moves confidently, with authority. She begins securing the frame, and thus ME, to the table. We make a few adjustments and I find myself in a reclined posture with my legs slightly elevated. Nicole maneuvers a tray over the top of my head and tells me that they'll be draping a sterile curtain from my head over the tray, giving me only a small window for viewing the world. Fantastic, I think. Now I'm pretty much paralyzed AND nearly blind. And I have another problem.
"Nicole..." I say, somewhat feebly. When I have her attention in my little window, I quietly let her in on a little secret. "I can already feel my bladder starting to fill, and I doubt I can make it 2 more hours. What do we do if it gets to the point where I can't hold it anymore?" I can only imagine the look of horror on her face behind the surgical mask. She blinks, pauses, and says, "Well, I'll find a urinal..."
"...and we'll just deal with it," I finish for her. Damn. I was really hoping for a catheter. How many guys have you ever heard say THAT?
The frame with arc attached for surgical instruments. |
When someone announced they were injecting more local anesthetic, I braced, but felt nothing on the right side and tingle on the left. A good sign I told myself. There was a brief pause just before the first incision was made, where everyone listened as my name, birthdate, allergies, and surgical procedure was read to all umpteen people present. Then incision, but no pain. I heard/felt lots of movement on my skull, then quiet. When a voice said, "Chris, we're ready to start drilling," I wanted to quit. Release the bolts and let me out. Where's my stunt man? Oh, crap. I do ALL of my own stunts. "Can I have a moment first, please?" I asked. Luann, my new counsellor and confidant, reinforced this for me to everyone in the room. "This is the part he's been most afraid of..."
I was afraid. WAS. Past tense. Damn the torpedoes, full speed ahead! Two deep breaths. "You may proceed," I said quietly. Then I focused on breathing, my heartbeat, touching my fingertips together, and the terrific screaming sound of a high-frequency drill coming through an imaginary concrete ceiling invaded my mind. When they'd finished drilling, I was again shaking everywhere that wasn't bolted down.
Brain Noises and Placement Testing for My Right Side
It then took a few minutes to get everything on the frame arc into position. Then Dr. Lee warns me that that I might feel some pain as they penetrate the dura and expose the cortex beneath it. This pain is sharp and quick, like an electrical shock. Its also not mild.
Then comes the process of pushing a small microelectrode through the cortex and subcortical white matter. While advancing the microelectrode, they dimmed the lights in the O.R. and "listened" to the electrical signals in my brain. The microelectroded output gets piped through a different loudspeaker. More people have joined the party, listening as the electrode advances. At one point, many people simultaneously say, 'There!" Unfortunately, I can't hear the speaker from inside my little cell. Dr. Lee calls for an x-ray and people scatter to a couple of "safe zone. " I say "Cheese" and manage to get a few light chuckles from folks, just to prove that something of me is intact. There's a little more fiddling with the mircoelectrode. Having found the depth where the first lead will be placed, the microelectrode is backed out and the actual lead wire is push into place. This is where my part comes in.
They apply test signals of increasing amplitute to test for efficacy and undesired stimulation effects. Purely for curiosity's sake, I asked what stimulation parameters are going to be applied. This got a few snickers from around the room. Go ahead and laugh, folks. I've been studying this and I intend to participate. I remember 90 Hertz, I think a pulse width of 15 microseconds (not sure), and voltage starting at about one-half volt. But before were even start, we take stock of the "honeymoon effect" that disrupts the bad signals due to microtrauma from the leads being inserted. My finger dexterity is much improved. My right arm is looser and I'm actually excited! Then they apply the test signal. My eyes cross and I feel an electrical tinge somewhere. WHOA. After a few second this stablizes and I can see again. They examine my right hand and arm, watch my eyes, and listen to my speech. Over and over I feel impaired when they "up the voltage" but it settles down. I remember feeling pretty darn excited about my right side relaxing.
Lock it down because Dr. Lee is quite pleased with this placement. More internally amplified noises from the bone conduction of sound into my ears. Also, somewhere before this, I had noticed that directly across the room in front of me is a monitor that's showing a video stream of the activity on top of my head. I didn't dare look at this while the drilling was under way, and I was occupied by Dr. Lee moving around and talking during the microelectrode survey. Now, I watch in a disconnected state as they attach a ring and a couple of screws around the hole in my skull and lock down the wire to (hopefully!) prevent movement.
Drill, Rinse and Repeat for Hole #2
As te team wraps up Hole #1 (left side of brain for right side of body), I become aware of a few things. First, I'm getting hot underneath all the blankets the've got stacked on me. Second, my bladder situation is getting worse. Third, I survived one wire. I pointed out the first item to Luann, and she quickly uncovered my feet and legs. I didn't notice until later that this had also obstructed my view of the video screen showing the top of my head. Drat! The second item I kept to myself, hoping I would make it. The third thought brought back a sober reality.
It was only a short interval until I heard, "Starting incision on the right." I felt nothing, but eventually heard some discussion. Settings were double checked, and I was advised it was time to drill again. I took my deeps breaths and told them to begin. I guess I had grown somewhat "used to" the sound and sensation, because this time I caught my mind wandering beyond the strict limits where I was trying to contain it. The drilling stopped and I was warned about the pain I might feel as they broke through the dura. Luckily just a tingle this time.
I could hear the noise from the microelectrode more clearly this time as they advanced it deeper into my brain. I was synchronized with everyone else in the O.R. at the "THERE!" moment this time. There was a bit more indecision this time about how far down to go, but soon the real electrode was being inserted and ready for testing. I was wishing it had been sooner.
This is where things got weird. Not just "Hey, I've got 2 holes in my skull open and people are experimenting with my brain" weird. When they applied test signals to the wire, my vision got blurry and it became difficult to speak. I was having trouble formulating thoughts and translating them into words. Also, it felt like my entire face was being pulled to the left by a strange version of gravity. They'd turn the signal off, and I'd be back to normal. The doctors were bending down to look at my face and asking me questions to clarify what kind of speech problems I was having. They tried turning off the bottom electrode and a few other tricks, but they couldn't get to a satisfactory voltage level. At this point, Dr. Lee let me know he wanted to try repositioning the lead. At this point, I also had an announcement: my bladder was full. Dr. Lee made a comment about my blood pressure being unusually high. No kidding. Dr. Lee wants to reposition the lead and test it before they try "repositioning me." I grudgingly agree to try. I shouldn't have. They ended up having to carve and drill more of skull (REALLY?!) before they could push the microelectrode into the new position. I remember thinking, "This is where things go sideways." Pushing through more brain material, disrupting more synapses, and another chance to hit a blood vessel. I'm sure my blood pressure was looking just great.
Truthfully, I was concentrating so intensely on keeping the the contents of my bladder inside my body that I don't clearly recall every detail of testing on the second pass. I remember it was better, but I think it was a compromise between the excellent placement of the first lead and the less-than-optimal first pass of this one. Dr. Lee and I agree that this was "good enough' and offered us plenty of options during programming. I really didn't like the idea of a third pass, disrupting and damaging even more of my brain and increasing the risk of "bad things, man."
With that, the scramble was on the close my head and find a urinal. Never one around when you need one, right? Soon, I was feeling completely relaxed and my blood pressure had returned to normal. And I realized that I'd survived and I felt like most of my faculties were still intact. Luann started pumping some of "the good stuff" into my IV and I got that woozy feeling. Comfortably numb at last. Yet, even the new medication was not enough to keep me from noticing that the two surgeons closing my scalp were pulling on the sutures like they were sewing up an old boot. I wondered if I was going to be billed for a facelift as well neurosurgery...
I don't remember much of the recovery area, other than being there quite a long time despite having been awake the whole time. I think I was there about an hour. Luann stopped in and checked, then wished me luck. There was further delay when they called down to Imaging for the CT scan, which had been scheduled in the O.R., yet they hadn't heard of me. More delays as they waited for a room to open up for me on the neurosurgery "floor" where I'd spend the night. I wish I could say the operation ended without bureaucratic muck-ups... but I survived.
And I proved that I can't even do brain surgery without some comedy relief.
It took me a long time to get through this. I felt everything that you felt including the need to stop. walk to the bathroom and pee. It's miraculous what the medical profession can do. But mostly I'm just happy my friend survived along with his sense of humor.
ReplyDeleteWell, since it took me a long time to write it, fairness dictates that others should suffer as well! I'd apologize for the detail, even the seemingly unnecessary stuff, but it would be insincere... ;) The story needed to be told.
DeleteI WISH I could have walked to the bathroom!
Well Chris, you certainly brought us along for the ride. Very well done Sir. And yes, I am taking notes. Very good to know everything worked out.
ReplyDeleteChris, I may not be an Angling buddy... just an old buddy... but that was an amazing story. We are all so glad that you came through everything with your mind and humor intact; and we wish and pray that your results are everything the Dr.'s could have imagined and more. May you have dozens and dozens of years of stream-walking ahead. And maybe a single malt or two along the way. Live well and prosper my friend.
ReplyDeleteSorry I can't select a profile - I'm not a very technical guy. I don't think I have any of those things listed.
Having had 2 DBS surgeries,I am amazed how different our surgeries were performed. I am really happy you showed such a sense of humor and are doing so well.
ReplyDeleteMaybe, I will see you on stream some day. It would be fun to fish together.
ReplyDeleteChristopher I loved all the detail and perspective you gave. I kinda forget what it's like to be a patient... the humor is always appreciated because it adds a little variety and relief in a stressful environment. I sure would have loved to see it. I'm glad it has all turned out so well.
ReplyDelete