The timing is really odd. On June 13, I will be talking to a bunch of congressional staffers about the need for increased funding for Parkinson’s disease research.
How did I get so lucky? Oh, you’re going to be so JEALOUS!
I’ve had Parkinson’s disease for 12 years. But more than that.
I volunteered for brain surgery five years ago. In fact, June 13th will be the 5th anniversary of the second stage of the surgery for deep brain stimulation…
Oh, heavens no. Deep Brain Stimulation isn’t something you get done in one sitting, like a haircut. There’s three stages. The insertion of the bone markers, the implantation of the probes way down deep into your brain (hence the name of the surgery), and then, the implantation of the neurostimulators under each of your collarbones.
I had phase 1 done five years ago today, June 5, 2007 at the Vanderbilt University Medical Center in Nashville.
I didn’t need the surgery.
No, you did not misread that. I did not NEED the surgery. This was a clinical trial. That means, in layman’s terms…
An Experiment! They wanted to “fiddle with my noodle and see what happens.”
Deep Brain Stimulation is something that has been done on advanced Parkinson’s disease patients for years. This trial — a Phase One Clinical Trial — did not offer a cure. It didn’t even offer to make me any better. That was not the point of the study. In a Phase One Clinical Trial, the idea is to see if the basic concept is even doable. In other words, this is what they wanted to find out in the Phase One portion.
1. Would people sign up for this kind of trial. They needed 30 participants. They got 30 participants.
2. Would people STAY in the trial for the whole five years. Only one backed out.
3. 15 of us would be selected for the surgery, the other 15 would stay on their regular medication. So, the question was, would the surgery itself kill us. It didn’t.
I am one of 15 people in the United States who has had this surgery as an early stage Parkinson’s patient. If all goes well, they will try a much larger trial with many other medical centers and hundreds of patients and really begin the data collection. And who knows? Maybe by the time I die, the FDA will approve DBS as an early treatment in Parkinson’s. It makes sense. They say it’s easier to find the “sweet spot” where the probes need to be seated when you’re younger and healthier.
But it was five years ago today I had the first part of the surgery done. The installation of the bone markers.
Still with me?
At 6:45 that morning I made my way to the radiology clinic at the main hospital at Vanderbilt University Medical Center. After filling out more forms, I was ushered back to the preparation/recovery room. After getting into a gown and lying down on the gurney, a gent from the MRI department ran a tape measure over my mid section.
“He’s right on the border line,” he told one of the techs. “60 inches… that’s right at the limit.” This meant that I would likely not fit into the MRI tube without being stuffed into it like cream cheese into a cannoli. “We’d have to squeeze your arms into your chest, and that would restrict your breathing… and we won’t do that,” the tech said.
“Well, I hope I haven’t come all the way down here for nothing,” I whined, wondering if this was the end of my participation in the clinical trial. I could visualize my patient file, with the word “Closed” stamped on it in bold red letters with the notation “Too Fat!” written below the stamp.
“No, Dr. Konrad (the neurologist who would do the surgery on June 13) says he has some old MRIs of you he can use,” the tech said. “We’ll get the CT and go from there.”
Bernard, the tech who checked me into the radiology department, came back and started an IV in my right hand. “This is my least favorite part of surgery,” I said.
“We’d worry if it was your favorite part,” he said without a smile.
Then came the procession of professionals to my little gurney. Associates of Dr. Konrad (“We’ve been told what a HOOT you are,” one said.), members of the anesthesia department, and the folks who would drill the bone markers in my skull all dropped by to say howdy.
Then they rolled my gurney into the CT lab. I slid from the gurney onto the CT table and the professionals gathered about me. Everyone was so busy. I almost felt guilty just laying there doing nothing. The two anesthesia ladies discussed which of them would stand on my left and which would stand on my right, and I got the feeling that the younger of the two was a trainee.
For a fleeting moment it occurred to me that all I had to say was “I’d like to stop now” and then everything would come to a screeching halt, I could get up off the table and go home. I decided against it.
The more senior of the anesthesia ladies told me she was just about to inject something into my IV. “This burns sometimes,” she said… and it did, but just a little. Her junior put an oxygen mask over my nose and mouth.
“You’re going to feel very sleepy in a second,” the senior one said.
I concentrated. I focused. I wanted to actually FEEL myself drift off to anesthesia-land. I’ve never been able to catch the feeling before.
Nor would I this time. A moment later I was back in the recovery room. “Are they done?” I asked. “Yup,” Bernard said. “What time is it?”
“About 8:30,” Bernard said. The whole thing took less than an hour. I raised a hand to my forehead and gently explored the region. I was expecting a puncture mark in the middle-upper part of my forehead, since the Vanderbilt handbook on the subject indicated that the bone markers are installed in a diamond-like pattern – one in front, one in back, one on each side of the head. I had two bumps on my forehead and two in the back… not a diamond… a rectangle.
“Don’t touch those,” Bernard said. “Your fingers are dirty.”
“I washed them this morning,” I said with a pout.
I asked for – and got—three cups of coffee, and they monitored my blood pressure for the next hour before turning me loose. I felt fine! In addition to the general anesthesia, they used local anesthetic to numb the top of my head. For the first time in my life – despite taunts to the contrary over the span of my entire existence – for the moment I actually was a “numbskull.”
After a wheelchair ride back to the GCRC, I called Gail and told her I had survived the procedure. She seemed glad to hear this. I took pictures of myself with my Treo (Yeah, I had a Treo then) and e-mailed them to her.
I was beautiful. But I wasn’t done yet.
My nurse-of-the-day came into the room and said radiology called. They were sending someone to take me back down for an MRI.
“I thought I was too fat,” I said.
“They’re going to try it anyway,” she said with a shrug.
Moments later, two young ladies arrived with a gurney. “Where’s your hospital gown?” one asked, no doubt puzzled by the fact that I was wearing a black t-shirt, green shorts and sneakers.
“Don’t have one,” I said. “And this is silly. I can walk down there.”
“No, this is procedure,” she said.
“Fine,” I said as I hopped onto the rolling bed. I pulled the sheet up over my face and said, “Let’s go.”
“You’re gonna scare everyone,” my driver said, pulling the sheet down. “Stop that.”
We went back the way we came… through the tunnel separating the main hospital from the Medical Center North. There in the MRI lab was the guy from earlier – the one with the tape measure.
He rolled the gurney into the MRI room and I got on the table. He asked me to lay down with the back of my head in the coil they use to get better pictures of the brain. My head didn’t fit. It’s a large head. What can I say?
I sat up so they could change the coil, and noticed something trickling into my right ear. “How did I get water on me?” I wondered as I wiped my ear. My right hand came back with my index and middle fingers soaked in blood.
“Fellas, I seem to be bleeding here,” I said as calmly as a guy with a bleeding head can say.” Turns out I bumped one of my new scars on the skull coil. As it was still numb from anesthesia, I didn’t feel it.
They put a gauze and tape over the incision and tried another coil. This one was even smaller… it was like trying to put 10 pounds of cheddar into a box meant for five pounds. They decided to go with a larger coil. This one fit tightly, like a football helmet, but it did the trick.
“All right,” the tech said, “we’re going to strap your arms to your side and slide you into the tube and see if we can get you in there. Pull your arms in as tight as you can.”
I did as directed and they slid me into the tube. My arms and elbows pressed into my rib cage, but they were able to get my head where they needed it. After nearly a half hour they pulled me out of the tube, injected me with a contrast agent, and stuffed me back inside. Another 12 minutes and they were done. I was treated to another gurney ride back to my room, and never was I so glad to see a hospital lunch as I was when they brought it in to me.
After lunch, I relaxed and waited for the local anesthetic in my head to begin wearing off. It did. And that’s when I noticed how much the entire scalp is involved in something as routine as the movement of an eyebrow. Each motion of expression was met with pain. It wasn’t so much a “headache” as it was a feeling of getting the crap beaten out of you by someone with brass knuckles. My eyes felt swollen. My sinuses ached. Tylenol took the edge off. But there was no way to lie comfortably. I was able to sleep that night, but woke up frequently – every time I moved my head.
By the next morning it felt a little better. By the time I got on the plane to come home, it was even better. I had the same seat on the flight home as I did on the flight to Nashville – but now I was paranoid about passengers swinging their carry-on luggage and smacking me on the head with it. When Gail met me at the airport, I was paranoid about banging my head on the car door as I sat down. It’s amazing how much you think about and care about a previously ignored body part when it aches and throbs with each and every movement.
My sense of humor, however, was not affected. Gail and I stopped at a grocery store on the way home and I noticed an elderly woman pushing a cart towards her car. “Howzabout I take off my hat and stagger towards that lady – Frankenstein-like – and demand that she give me my brain back?” I asked. Gail shook her head.
“Yes, that’s a good idea. Why don’t you do that? I’ll wait here.”
She knows me too well.
So, that was part one of a three part surgery. Part two was June 13. Part three was July 3. And now, five years later, it seems like it all happened yesterday.