My World of Parkinsonian Delights

Three Years Ago Today, the DBS Neurotransmitters

It was three years ago today that I had THESE things put in.  Here’s how I relate the story in “No Doorway Wide Enough”, which … oddly enough… is a book you can buy to help benefit PD research.

I was in the shower when I heard a knock at the door.

“I’M IN THE SHOWER,” I hollered.  My wife was going about the business of getting dressed and folding up the little cot the GCRC staff had given her for the night.

“They want you over there right now,” the nurse said through the door.  It was not quite 7:30 a.m.

“I was told I wasn’t supposed to even check into the Admissions Office until 9,” I replied through the shower door.

“That’s what we were told, too,” the nurse said.  “But they just called.  Someone cancelled and they’re ready for you now.”

“All righty, then,” I said.  It was good news.  I was originally supposed to have this third and final phase of DBS surgery on June 25th.  Then it was rescheduled for July 3rd at 10 a.m., meaning I was due in Admissions at 8 a.m.  Then it was rescheduled for an hour later.  Now, here it was, just about 7:30 a.m. and I was dripping wet in the shower and they were waiting for me in the operating room.

It would be wrong to say I had been “dreading” this operation.  All along I had been told that this was the “piece of cake” portion of DBS surgery.  Just two hours, in and out.  Two cuts into the side of the noggin to locate the ends of the electrode leads left coiled like little wings on the side of my head since June 13.  Two cuts into the area below my collarbone to make little pockets for the little Medtronics “Soletra” neurogenerators that would provide the electrical stimulation to the subthalamic nucleus.  They run the wires up along the side of the neck from the neurogenerators, connect them to the leads, stitch everything up, badda bing, badda boom!  Done!  No more surgery!

So I was certainly not dreading this surgery.  Perhaps I should have been.  Of the three procedures I’ve gone through thus far, this was the most painful.

We arrived at the GCRC at Vanderbilt University Medical Center the night before after flying in yet again on Southwest – henceforth to be known as “Squealing Baby Airlines.”  (If anyone is reading this and wants to make a little money, come up with a line of “Thank You for Sharing Your Delightful Screaming Child with the Rest of Us” greeting cards that you can hand out to parents on these kind of flights.)  This time, they were clear on the fact that Gail was going to stay with me and they were ready for her with the fold-out cot.  The room was smaller than the one from my previous visit, and Gail didn’t think there’d be room for the bed, so she at first said she’d be happy to sleep in the little recliner in the room.  “I just don’t want to put anyone out,” she said.  But as night came, she was happy to have the bed.

I slept moderately well, but – as one might imagine – I was somewhat apprehensive.  In and out, two hours, piece of cake aside… it was surgery, and it required general anesthesia.  I had that feeling one has at the beginning of what one knows will be a long, trying day – I’ll be glad when this is all behind me.

So now this news that they were ready for me hours earlier than expected came as excellent tidings.  All the sooner, all the better to get this whole thing over with once and for all.

This time Gail didn’t have to drag the suitcase along with her since we were going to be returning to the GCRC following surgery.  We headed out through the front door at Medical Center North and made our way to the Main Hospital Lobby.  After going through the Admitting Office, Gail and I sat in the lobby waiting for someone to come take us to the pre-op room.

Eventually a lady called my name and that of five other folks.  (I can always tell when someone is about to call my name in a medical office.  The nurse – or whoever – will look at the piece of paper with my name on it and say, “William….” and then her expression will become one of confusion as she grapples with my utter unpronounceable last name.  “Schmalfeldt,” I will generally interject.  On the rare occasion that the person gets it right, I will be profuse in my congratulations.  It’s not a hard name to pronounce – think of a small hat made out of felt.  Then say it as if you had a German accent, and you will have a “schmal felt hat”.  Leave off the “hat” and you have pronounced my last name correctly.  Thank you.)  We crowded onto an elevator and made our way to the pre-op room.  A smiling young lady named Bonnie showed me which bed was mine, and told me to strip down to my birthday suit, put on the hospital gown, and wait on the bed.

Then came the traditional parade of experts – a representative from Medtronics was first.  They apparently like to meet the people who will be walking around with their devices implanted.  Then the anesthesiologist who told me much more than I needed to know about what he would be doing with me before, during and after putting me to sleep.  Maybe I’m wrong, but if I’m not going to be awake for it, or if you’re going to give me a medication that will cause me to not remember you did it, then I don’t really need to know about it in advance.  But that’s just me.

Whenever I have surgery, I always seem to present the anesthesiologist with a bit of worry.  For one thing, I have a huge neck.  That sometimes makes for difficult intubation.  Then there’s my overall size.  Although I’ve never had a heart problem (knock on wood!) my bulk makes anesthesiologists wonder if they’re going to be able to give me enough “nite nite gas” to put me to sleep – without killing me.  So far so good.After we got the IV started, the anesthesiologist told me he was giving me a little “calmative”.  It made me nice and calm.  I May have even been singing when we rolled to the OR.

They got me to climb onto the operating table, and I was very happy and very calm and very relaxed when the anesthesiologist said he was going to give me MORE medicine and I don’t remember much of anything that happened in the next two hours.  In fact, the next thing I can clearly recall is wondering why in the hell my neck hurt as badly as it did.  Was I hard to intubate?  Did they have to twist my neck into unusual contortions?  Did someone put me into a headlock while I was out?  What the hell did these people DO to me???

I opened my eyes and realized I was back in the post-op recovery room.  My nurse, in a gentle and reassuring way, told me the operation was over with and I was fine.  I asked if they could lift the back of the gurney so I could sit up a bit, and she complied.  I took mental stock of my condition.  I noticed my two new wounds on my chest and I gently felt the sides of my head for the two new incisions that were there.  But I was still wondering about my neck.

Eventually it dawned on me that they had to run the wire from the neurostimulators up through the lateral sides of my neck to where they were connected to the electrode leads… and that since there was no natural passage for these wires to traverse, they had to make one.  And that would likely cause a bit of trauma.  It all started to make sense as I sat there, blinking, taking deep breaths, trying to wake up.After about an hour they brought Gail in to see me.  She walked up to my gurney and gave me a look that reminded me of the way Jackie Kennedy looked at JFK in Frame #317 of the famous Zapruder film.  She waited outside the curtains as I got dressed and sat on the wheelchair they brought to roll me back to the GCRC.  When I was done, Gail gave me the same look.  “There’s a huge blood clot on the back of your head,” she said.  I felt, and sure enough there was a large area of dried and matted blood and hair.  “There’s a huge blood clot on the back of his head,” she told my nurse.  Between the two of them they got the blood cleaned off and I was soon on my way back to my room at the GCRC.

The surrealism continued on the following day.  I woke up early and trudged out into the hallway to find a cup of coffee.

“Where are you heading,” the overnight nurse asked.

“Going to the patient kitchen to get a cup of coffee,” I said.

“There isn’t any,” she said.  And it dawned on me.  It was the 4th of July.  I was the only patient in the joint.  The kitchen staff was NOT going to come in and make coffee for just one patient.  The nurse said she’d try to find some instant coffee.  I told her that would not be necessary.

They brought a heated-up breakfast at 8 a.m.  At 9 a.m. we were in a cab heading for the airport.  We checked our bag and got into the security line.  Gail went through the metal detectors.  I got to the head of the line and showed my temporary Medtronics ID card to the TSA agent.  (I’ll get my permanent one in a couple weeks.)  It notifies the agent, “The bearer of this card has an implanted medical device prescribed by his or her doctor.”  The squat, swarthy TSA agent asked what kind of device.

“Deep brain stimulation,” I said.


“Like a pacemaker… for the brain,” I said.

“If it’s safe for you to go through the metal detector, go right ahead,” he said.

“I don’t think it is,” I said.  “I just had it put in yesterday.”  See, the metal detector can turn the neurostimulator on.  It can turn it off.  It can mess with the stimulation parameters.

Realizing that this meant he’d have to get off his chair for a moment, the agent rolled his eyes and told me to put all my stuff in a bin and run it through the x-ray machine.  Then he escorted me through a gate and directed me to take a seat.  He pointed to a small row of chairs, in front of each was a small mat with the white outline of two footprints upon it.  That way, I would know where to put my feet for the upcoming search.  How convenient.

The agent WAS very thorough and after he was done, I realized he knew as much about my physical anatomy as my wife does.  As he approached the newly implanted neurostimulators in my chest area, I asked him to be gentle.  He was.  Thank you.

The flight home was a surreal mixture of comedy and drama as a hyperkinetic flight attendant insisted on playing “Are You Smarter Than a 5th Grader” with the passengers for small door prizes, and various people got sick.  One young man staggered to the front of the plane.  The flight attendant gave him a large plastic bag and directed him to the lavoratory.  Then she had the teenager sit down on the aisle seat, right across from me.  I began to wonder how quickly my new wounds would take to infection should this kid puke all over me, but thankfully it didn’t happen.

Eighty or so minutes in the air, and we were on the ground in Baltimore.  Then home.

Then we had to bail for a tornado warning.  We had been home all of 15 minutes when the Weather Channel said there was a tornado heading directly for our trailer park.  We piled the dogs into the car and took a drive to an open spot where we could watch the weather and dive into a ditch for cover should the need arise.

It didn’t.  A rather scary wall cloud rolled past as the dogs heaved and whined in the back seat.  Raven, especially, is an auto coward.  She drools and weeps and rolls her eyes in terror thinking that each trip in the car means she’s going to be spayed again.  Shiloh seemed to be upset by Raven’s mental anguish, but otherwise took the emergency in stride.

Thirty minutes later we were back in the trailer.  Now it was Shiloh’s turn to be afraid as the local idiots with their fireworks were out in the driving rain making noise.  The thunder competed with the firecrackers and for awhile it seemed as if God and my hillbilly neighbors were having a contest to see who could be loudest and most destructive.

I stayed home from work on the 5th.  But I was back at my desk on the 6th, regaling friends with much the same details I’ve just shared here.

Back to Nashville for programming on Monday.  Then, hopefully, I’m done for awhile.

There were several day trips to and from Nashvillle for programming, and I think it took until October 2009 to finally get the settings absolutely right. But that’s the story.

Which, as I said, is one of the MANY amazing first-person-account tellings of the tale in “No Doorway Wide Enough.” Available EVERYWHERE!


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