Let me share a somewhat unconventional medical story with you. This one deals with a patient I have been working with for years. That patient is me.
After a haircut in early May, I noticed a wound on the side of my head that had been bothering me for a few days. In 1998, I had a neurostimulator surgically implanted in my brain to control Essential Tremor. I now suspected a problem with a lead wire in the stimulator and took a photo of the area to e-mail to my neurologist in Des Moines. She got in touch with me yet that day and told me to get started on antibiotics while they searched for a surgeon to work on my problem. If the lead wire of the battery-operated device was infected, the infection could spread to my brain and be fatal. Surgery would likely be required to fix the problem with the infected wire.
It seemed that I had picked a time when every neurosurgeon within a six-hour drive was either on vacation or on a work-related trip of some kind. No surgeons were available to operate, so I had to go with a four-week course of IV antibiotic treatment. Because the early part of May is not the slow season on the farm, I really wanted to keep my surgical options close to home if possible. A friend put me in touch with the team at Mayo Clinic in Rochester. I had spoken about my deep brain stimulation (DBS) experience at a Medtronic/IETF Community Education Event in Rochester in 2008. I was on the program with the surgeon from Mayo who does DBS, Dr. Kendall Lee, and became a big fan of his that day.
Once I got in to see Dr. Lee in early June, he decided that the infection in my lead wire was above the connection behind my ear, which meant my entire system would have to be removed. Surgery was scheduled for June 15. It went well, but it still took me a couple of weeks to regain my appetite after the antibiotic course I had been taking. The drugs had left me with no appetite and no energy. By the time it was all done, I had lost between 25 and 30 pounds. It’s a weight control program I don’t recommend to anyone.
From pure force of habit, I still reached for my remote to turn it on each morning for several days after surgery. This time, the tremors didn’t go away. What did go away was the full life I had come to enjoy the previous 11 years. Drinks could no longer be filled to the top. Ice cube trays were a challenge to fill and place in the freezer. Dishes rattled as they moved from countertop to table. Shaving took a lot of concentration. Outside, most of my mechanical work came to a halt and had to be handed off to others. The first check that I wrote after surgery was not the kind of penmanship work my third-grade teacher would be tremendously proud of if she had seen it. On the rare occasions when I would go somewhere to eat, I had to narrow my choices to the places I knew had straws with their drinks and had glasses that could be handled easily. All it took was some ice chattering in a drink to remind me how much I wanted to get this device put back in again.
Surgery finally took place last week. In spite of all the patients I have talked to about DBS over the years, I was a bit apprehensive about surgery. I had been through it before twice already, and I knew what the outcome could be, but the thought of having the stereotactic frame put on again was incredibly intimidating. Dr. Lee had told me that he would be 70% confident of getting the lead in exactly the same position again if I were asleep during surgery, but he’d prefer it if I were awake and participating. I told him that was my preference, too, mainly because it is a tremendous process to watch and experience as they find the location and turn on the stimulator. In the weeks before surgery, being awake seemed like the only option. In the days and hours immediately before surgery, though, that 30% chance of failure seemed like a more appealing risk to take if it meant skipping the frame!
As the time for surgery drew near, I had an ongoing battle in my mind over whether the stereotactic frame discomfort was worth the potential benefit. And when I say “as the time drew near,” I don't mean the days and weeks before surgery. I’m talking about the ride down the hallway atop a gurney on the way to the operating room! Two things kept me focused on going forward. One was the look in Dr. Lynn Struck’s eyes as we hit the right spot in my brain and turned on my stimulator in the operating room on March 25, 1998. My tremor control was so good that there were actual gasps in the operating room at that moment. Dr. Struck’s surgical mask could not contain her smile. The look in her eyes will stay with me forever.
The other thing that kept me going was the moment in a restaurant after my programming when I first held onto a full drink and didn’t hear the usual chatter of ice against glass. The look in Dr. Struck’s eyes and the silence of that full glass are what made me realize that surgery was the only option I had this time, no matter how uncomfortable it might be.
They also led me to a special project after my second implant surgery in 1999. I had an artist help me with a piece for Dr. Struck. We did a sculpture that is shown in the photo. It is my hand raising a toast. The inscription on it reads:
Dr. Lynn Struck,
For your help in healing the body,
Sharpening the mind and
Lifting the heart,
I raise this toast to you
Early in my surgery last week, several people in the operating room remarked that they didn't think my tremor looked very bad. What they didn’t know was that I had become very good at hiding it from people. It seems that neurologists and neurosurgeons are very good at cutting through the camouflage to reveal the full potential of that tremor. Dr. Lee had me hold onto a fairly large cup as the lead was placed in my thalamus. The cup was too big for me to hold onto in such a way to hide my tremor. He had me hold it straight in front of me. It began to shake quite aggressively. That’s when the skeptics realized my tremor was worthy of DBS. As the lead was placed and the stimulator was turned on, the cup came to a dead stop. Dr. Lee asked how steady my hand was, and I started to peel my fingers back from my grip on the cup, just to see how steady I could hold it with only two fingers around it. The results were incredible. I could sense the delight in Dr. Lee’s voice as he told the assembled group in the operating room, “Everyone, move to where you can see this! This is amazing!” He then turned to his surgical resident standing immediately behind me, and said, “In neurosurgery, you don’t get results any better than this.”
I thank my surgery team and everyone at Medtronic, maker of the neurostimulator, for making that moment happen for me again. Stories like mine are probably not that out of the ordinary. The fact that they happen every few seconds for people around the world is what I truly admire. I am grateful to be one of them.
Guy No. 2