My World of Parkinsonian Delights

Three Years Ago Today

Do YOU know what YOU were doing three years ago today?

I know what I was doing…

After a quick shower – Gail folded up the bed, her sheets, blankets and pillows so the nursing staff wouldn’t have to do it – we were ready to go.  I was discharged from the GCRC and we walked the short distance to the main lobby at the Vanderbilt University  Medical Center.  The Admissions office was full, with only a few seats available.  Gail decided to wait with the suitcase out in the main waiting area.  I checked in and took a seat.  As each patient was admitted, he or she would leave with a group of four or five friends or relatives.  Then another would arrive with five or six relatives in tow, and they would all sit in the admissions office waiting area.  When it was my turn, I gave the admissions person all my information. She punched up a wristband and a blue card with my info in raised letters and told me to take a seat in the main waiting area.

In a few minutes, a gent called my name and that of another patient.  Gail and I followed into the elevator up to the pre-surgical area.  Now that things were rolling, I was no longer nervous.  I was just ready to get this show on the road.

Gail was asked to sit in the waiting room while I was taken to a gurney in the pre-op area.  The nurse told me to strip down to my birthday suit, put on the green hospital gown, and have a seat on the gurney.  I did as told and waited for the nurse, who was a cheerful, chipper middle-aged lady whose name I cannot remember.  She started an IV on my left hand, and since she used a numbing agent before inserting the IV catheter, it didn’t hurt much.  I was visited by surgical residents who explained the procedure, anesthesia doctors who explained that I would get some sedative in the first and third phase of the operation, I signed various consents.  Then it was time to be catheterized.

See, this is a long procedure.  A patient cannot get up to go to the bathroom.  So a tube into the bladder is a necessity.  My cheerful, chipper middle-aged nurse would not be the one performing this duty.  That particular chore fell to a young man named Donta.

Let me set this up properly.  Donta is a very nice, very pleasant young man.  He has the build and look of a middle linebacker in the NFL.  He looked as if he could lift me off the bed with one hand, insert the catheter with the other, and slam me back down to the gurney – all without breaking a sweat.

Donta walked into my area with the sterile catheter kit and shook his head sadly.  “You’ve done lots of these, right?” I asked.  He nodded.  He opened the package, poured out the antiseptic solution he’d use to wipe down the tip of my urethra, and applied lube to the tip of the catheter.

“Take a deep breath,” he said.

Now, to be fair, I didn’t scream.  I didn’t yell.  If you had been standing outside my cubicle you would have heard sounds like “Oooof, Nnnnnngh, Unnnnnh,” but no screaming.  Donta showed no mercy.  He got that thing where it needed to go in short order, and got the front of his scrubs doused in urine as a reward.

“Struck gold on the first try,” he said.  I sheepishly explained that I wanted there to be a little urine in my bladder so he’d know he had hit a bull’s-eye.  He smiled, then went to change his scrubs.

As the clock sneaked up on 7:30, the pre-op room got busier.  Then, like the biblical Hebrews fleeing the pharaoh’s Egypt, patients on gurneys were wheeled out of the staging area and into their various OR’s.

As I was rolled into mine, I announced that the star of the show had arrived.  The various residents and techs assured me that I was the star of this particular show, and they set about getting me ready for my performance.

I had brought my iPod along with 132 songs on a playlist I called “DBS Ditties.”  This included an eclectic mix of jazz, classical music, tunes from the 30s, and lounge music.  The fact that I brought the iPod was communicated to Dr. Konrad, who hadn’t arrived yet.  I was told that the good neurosurgeon was at the moment digging through his office for his iPod player.  We would have MUSIC this cheerful morning!

Dr. Konrad arrived and brandished the iPod player, he took my iPod, plugged it in, and I told him to go to the “DBS Ditties” playlist.  This generated a bit of a chuckle among the crew, and the concert began with Mozart’s “Concerto for Piano and Orchestra, No. 24 in C Minor, KV 491, Allegro.”  It set a dramatic tone as the crew scrubbed my head, set up the plastic sheeting, and generally made ready to dig in for their morning’s work.

I kept up the banter, talking about things I don’t recall at present.  It was important for the success of the surgery that I be placed in as comfortable a position as possible.  And they were able to do this quite simply.  Imagine being in a large lounge chair aside a swimming pool for hours.  My neck was fully supported, they put pillows under my knees, foam pads under my heels, and foam rests under the entire length of each arm.  Then Dr. Konrad said it was time to numb up my skull.  I had been expecting to be sedated for this portion, but wasn’t feeling the effects yet.  “This is going to feel like giant hornet’s stinging,” Dr. K said.  And he wasn’t far off.  After a few very painful injections, I began to feel the sedation… don’t know what caused the delay.  But it didn’t seem to hurt quite as badly after the sedation started running in.

I didn’t feel it at all when they pulled out the staples over the bone markers, nor did I feel it when they cut two four inch lateral incisions into the top of my head.  I was good and groggy when they drilled holes into my skull.  Dr. K made a point of explaining that the driver on the drill was set to cut off instantly when there was no further resistance from skull – thereby avoiding the damage that could have been done to the covering of my brain.  And darned if it didn’t cut off the instant it was supposed to.  I felt the vibration through my entire skull, and smelled the kind of “burned bone” smell one might recall from drilling at a dentist’s.

I felt myself being roused from my groggy reverie, and asked if this was being done intentionally.  I was assured that this was the case, because they needed me awake and alert for the next phase.  I felt somewhat nauseous from the sedative and my entire body had broken into something of a light sweat.  Everyone was so busy fastening the frame to my bone markers, installing the probe drivers, and getting everything else ready to go, I didn’t want to bother them with such a petty complaint.  Eventually, someone noticed I was glistening and asked if I was warm.  They covered me with one of those air-cooled blankets and it was like heaven.

As I lay there, fully awake and listening, they began inserting the probes.  First, the “listening” probes.  Now keep in mind that for the last eight days, they had a good map to go by – my CT and MRI scans.  And based on previous experience and using data from other patients they had a pretty good idea of where their “target” would lie.  The subthalamic nucleus isn’t highlighted on the scans.  And every brain is slightly different.  But you go with the averages, and you have a general idea of where this tiny, football-shaped piece of brain will be found.  So, since my right side is the most profoundly affected, they advanced the “listening” probe into my left brain.

(And here, I will mention that once they had my head opened, one of the doctors called down to the waiting room and left a message for my wife, saying that they had dug two holes in my head and found brain in both of them.  Knowing my sense of humor, they felt my wife would appreciate the joke.  She did.  She also appreciated Dr. K sending her a photo of me on the table, taken with his Treo cell phone.  I showed him how to shoot it to my phone number.  He also took a photo of what was going on there on the other side of the plastic sheeting.  He sent that to Gail, too.  I wondered how much she would appreciate that.)

As the probe advanced, we could hear what sounded like an AM radio that wasn’t set on a station, picking up faint static.  As the probe approached the target, the static started to pick up in intensity, like there was a thunderstorm in the distance.  They attempted a few different approaches, and each time in the area of the STN, there were the crackly sounds of misfiring neurons… and they were able to increase the intensity even further by manipulating my right shoulder, elbow, wrist, and foot, demonstrating that these were movement neurons that were misfiring.  Dr. K remarked how easy it had been to find the area.

“And to think, not a year ago, I was seeing a neurologist who stated that I did not have Parkinson’s,” I said.

“We’ll send him a copy of the paper we’re writing,” Dr. K joked.

It was necessary for me to be quiet during this portion of the operation.  If I spoke, there was a problem with bone conduction artifact… meaning that the test probe would pick up the sound of my voice as it was heard in the depths of my skull.  But being quiet came with some challenges.

For one, my neurologist, Dr. Charles arrived around this time and took part in the limb manipulation efforts.  He stood at the foot of the OR gurney and waved.  “Hi, Bill!  David Charles here.”

“Hi, Dr. Cha…”

I could hear my words coming out of the speakers, distorted but recognizable.  “So, this is how my brain hears sound,” I thought.  I smiled and waved.

Other times, if something was said that I wanted to agree with, I found myself nodding my head.  Not a good idea when you have probes in your brain.  I adopted a “thumbs up” signal to indicate my agreement with something being said.

Now that they had secured the target area, it was time for the stimulation test.

This was, in a word, freaky.  I had no idea what to expect, save for some possible pulling, numbness, tingling and the like.  But they needed to find that “sweet spot” between “no effect” and “side effect” and this was the only way to do it.

(Now, keep in mind that what follows isn’t exact, that for the sake of narrative I am playing fast and loose with the numbers being called out, but that this is generally how it went.)

They started with the left brain and advanced the probe to an area close to the target they had identified.  Dr. Charles held my right arm and began to manipulate it.  “One.  No efficacy,” he said, meaning that set at 1, the stimulation had no effect.  He called for it to be raised to 1.5.

“There it is,” he said.  And he continued manipulation.  He asked me to open and close my fist, and to rotate my hand.  Even though I had been off the medication since the previous Sunday, my hand was loose and free.

“You can really feel it,” he said about the stimulation.  “The cogwheeling (that ratcheting stiffness in a limb that comes with Parkinson’s) just melts away.  Raise it to 2.”

He asked me how I felt, and I replied “fine.”

“OK, 2.5 then.”

I felt something… even now, it’s still almost impossible to describe the feeling.  It was something like nausea, but not quite.  But “nausea” was the only word I could think of for it.  Dr. Charles told me to take a few deep breaths and we’d try one more.

“Up to 3,” he said.  “How’s this?  Any different.”

“It’s… It’s… It’s…”


“…hard … to … talk…”

And besides, I noticed I couldn’t move my eyes.  He held a fist up for me to look at, and I was able to follow it on one direction, but not the other.

“Turn it off,” he said.  And as if a magnet that had been holding my eyes and tongue had been turned off, I was able to at least try to explain what had happened.  But words still failed me, and I was more than just a little freaked out by the experience.

But now that I knew this was likely to happen with each successive testing of the electrodes, I was ready for it and felt I could make a good effort to define and describe what was going on with me.

Bit by bit, the electrode in my left brain made its way towards, into, and through the target area in my STN.  We found that with therapeutic stimulation, the symptoms on my right side were eliminated.  With too much stimulation, I had varying degrees of dysarthria (difficulty in speech) and eye-freeze.  The speech difficulty ranged from speaking in a slow, slurred voice, to being completely unable to think of the proper word, or even to think of a word to say.

Testing my right brain followed a similar course.  The only difference was when they reached the high end of stimulation on the last few passes, my mouth pulled to the left with a half-grimace as I tried to speak, and my gaze was averted in that direction as well.  But the instant the stimulation was turned off, I would return to normal.

Dr. Charles seemed a bit frustrated that I wasn’t able to be a bit more specific with what I was feeling and experiencing, but Dr. Konrad seemed more than satisfied with the electrode placements and they agreed to lock them in place and close me up.

By this time, the cooling blanket had left me feeling cold.  A heated blanket placed over my chest and shoulders warmed me up nicely as Dr. K and his team began the process of locking everything down, securing the electrodes, and closing the wounds.  They put me back into sedation and I listened as the doctors chatted amongst themselves as they applied the absorbable sutures and covered the incisions with derma bond liquid sutures – like Crazy Glue, but more expensive.  They created pockets in the skin under my scalp for the wire leads from the electrodes that will be attached to the IPG devices when they are implanted on July 3rd – that date was changed from June 25th due to Dr. K being called out of the country to take part in some other seminar or something… I’m still kinda foggy on the details.

At about 1:30 – six hours after they started, they rolled me into the post-op recovery room, and Dr. K went down to the waiting room to tell Gail the operation was over and I had done well.

In the recovery room, I was assigned to Nurse Tom.  A great guy, with a soft, southern drawl, he was easy to like.  I asked for water and he brought me ice chips.  Never in the history of the world had ice chips been so delicious.  Our next step was for me to be taken to radiology for a CT scan, which we did about an hour after I rolled into the recovery room.  They let my wife come up to see me briefly, and told her that the CT would determine whether or not I went to a regular room or neuro-ICU.  “If there’s no bleeding, he’ll get a regular room,” the doctor said.  Shortly before 3 we headed down to radiology.

There was a Tennessee Highway Patrolman in the elevator when we got on.  “Afternoon, Officer,” I said.  He wished me a good afternoon as well.

“I understand I have the right to remain silent, everything I say can and will be used against me in a court of law…” I said.  I was recovering from surgery, but my sense of humor was intact.

“Don’t ask him any questions, Officer,” Nurse Tom said.  “He’s already had his brain picked today.”

I gave Tom a high five for the zinger.

Still woozy, I crawled onto the CT table.  I could still feel the catheter, a very annoying sensation.  But they were quick about the CT and I was in and out of there in just a few minutes.  We rolled back to the recovery room and waited.

And waited.

And waited.

And waited.

A couple hours later, Dr. K’s intern came by and asked how I was doing.  “You tell ME,” I said.  “I’ve had my CT taken.”  He went to a nearby computer monitor screen and took a look.  He came back smiling.”

“We do good work here,” he said.  “No bleeding, just some air, but you expect that in this surgery.”  He assured me that it was just a matter of waiting for a room to open up and I’d be on my way to a regular room on 6 North.

While we waited, Donta came back and pulled out the catheter.  I won’t say it was like he was trying to start a lawnmower, but it sure felt that way.  “It’s gonna burn when you pee at first,” he said.  I asked for a urinal.  He was correct.

Nurse Tom was my constant companion for the next few hours.  We chatted about everything under the sun.  In the meantime, he kept me hydrated with Sprite, brought me a tub of Jello, and when it was clear I would keep the Jello down – a sandwich.

And we waited, and waited and waited for a room.

Around 6 p.m., Tom rolled me into a larger room with chairs and TVs and said he would bring my wife up to sit with me.  Poor Gail had been waiting since being told that the CT scan would determine whether I spent the night in ICU or a regular room.  No one had told her the CT was OK.  So she was relieved when she showed up to sit with me.

When we were alone, she offered me a Milky Way candy bar.  She bought me a candy bar, thinking I might want it.  I love her with all my heart.

At 6:30 Nurse Tom went to dinner.  Shortly after, the charge nurse for the post-op recovery room told me that they found a room for me, but that we’d have to wait for Tom to get back.  When Tom got back, he said we’d have to wait until after shift change, but by 7:30 or so, we’d be in our room.  And we were.

For the first time, I got a look at my gruesome surgical scars.  I look like I was bitten on the head by a shark.  My face was swollen, my head hurt.  Gail took pictures to preserve the moment.

There was no rollaway bed for Gail in this room.  But they were able to get a pull-out chair for her to sleep on, which she did with varying degrees of success.  I know, because I was awake most of the night.  For one thing, I was nauseous from the Lortab pill I had taken for pain.  The ache wasn’t so severe that I wanted morphine, but I had hoped the Lortab would cut it back a little.  All it did was make me sick.  And I felt constipated.  And my head was crackling like a bowl of Rice Krispies.

Seriously.  As I lay there, trying to sleep, my head kept up a steady “snap, crackle, pop” as the air that got into my skull was reabsorbed.  If I opened my mouth, you could actually hear it.  All night long.  Snap.  Crackle.  Pop!

I had no appetite at all the next morning.  I was able to eat some of my breakfast, but the eggs, bacon, etc., went uneaten.  They were very nice to sneak some brekky in for Gail.  Same thing for lunch… just a bite here and there.  Dr. K popped in to check me out and said I was free to go home.  My nurse for the morning arranged for me to be transported to the Admitting Office in time to catch a cab to the airport.  Gail and I spent the better part of the morning dozing and watching TV.

It wasn’t quite as nice of a cab that took us to the airport.  A chatty young Arab in a run-down, rattletrap cab drove like a madman and hummed Arabic songs to himself when he wasn’t grilling me on my medical condition.  But we got to the airport alive, and I was able to secure a pre-boarding pass to make sure we got on the plane ahead of everyone else.

So, what were YOU doing?


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