A Parkinson's Tale of Two Surgeries

Or how I ended up with DBS and no, I don't mean an Aston Martin

The DBS Surgery

After months dithering, I underwent Deep Brain Stimulation (DBS) surgery in August 2019 to alleviate some of the more severe symptoms of Parkinson’s disease - a movement disorder that I have fought against since 2005. I am very pleased with the outcome of the surgery though it did have its moments. If you are considering DBS surgery, the following may help or it may scare you off, so be forewarned.

During one of the preliminary surgeries, the surgeon drilled four small holes into my head to insert fiducial markers that would later serve as guides during the main lead placement surgery. This was done as I sat fully awake in an armless straight-back chair in a rather sparse exam room. A room that reminded me of Russian spy films with a hint of interrogation and torture hanging in the air. His nurse (I cannot remember if her name was Renfield or Igor) stood about 10 feet away facing me and signaled the surgeon by pointing directions with her fingers. First left, then right as if she and the surgeon were hanging a picture.

As I sat there feeling the dentistry whine as he drilled into my skull, I remembered what my mother had told me as a teenager. She observed that my head was so hard that I would argue with a stop sign. I also kept praying that the surgeon had followed the old carpenter's rule to always measure twice before you cut . . . or drill.

The subsequent surgeries, which were a week apart, where the surgeon placed the stimulation leads into my brain and a battery into my chest, went flawlessly. Surprisingly, the battery placement was the worst part. Well, that and the anticipation as I waited for the wounds to heal so that the system could be activated.

Finally, programing day arrived where I sat down with my neurologist while she adjusted each implant to find the optimal amplitude, pulse width, and frequency. As she slowly activated the system, I felt the rigidity fall away from my muscles. I had been prone to painful leg and foot cramps on my left side. These totally disappeared and have remained gone.

The lasting result of the surgery was a substantial increase in my mobility, a significant decrease in the amount of dopamine medication that I require daily and a return to a more normal diet and healthy weight. I have continued working at my office and have resumed some of my abandoned outdoor pursuits with the exception of motorcycling - an activity that I sorely miss.

 Fast forward to August 2022 . . .

The Hernia Surgery

The BBC recently reported the discovery of the skeletal remains of a young person from Borneo who had survived the surgical amputation of their lower left leg over 31,000 years ago making it the oldest example of humans performing a successful complex medical procedure.

This report was on my mind as I waited in pre-op for my hernia surgery to begin. If you are curious, the hernia came from too many Saturdays spent cutting, splitting, and hauling firewood after my dad along with many other people in the Dark Corner¹ declared their own version of energy independence in the 1970s. Back then, land was cheap and hardwoods were plentiful. We lived on a farm so no one gave much thought to handing a chainsaw to a 13-year-old and turning him loose.

Back in pre-op, in between the ubiquitous visits of orderlies, nurses, and doctors repeating the same questions, I thought about how advanced modern healthcare systems have become, but how inconsistent the availability remains. During my surgery research, I discovered that the NHS wait time for hernia surgery in Great Britain was 57 weeks from the date of referral. Compare that to the two weeks wait that I experienced. And I am sure that the 31,000-year-old teenager from Borneo did not wait 57 weeks for an amputation. The availability of treatment should be a core component of civilized medicine.

During the two week wait, I was offered a choice of surgical procedure between an open incision or robotic assisted. I chose the open incision route because it did not require general anesthesia (with its unknown cognitive effects) and it did not involve robots. I don’t like robots and I don’t like seeing robots taking over the jobs of American workers . . . anyway, pardon my sidetrack into the political nonsensical.

Along with open incision, I chose the bio-degradable mesh option as the material for hernia repair. Between the implants in my brain, the battery in my chest and the mesh in my abdomen, I am well on my way to being a transhuman (not to be confused with a transgendered human) or a cyborg. Which may explain my aversion to robots.  

Finally, the time of reckoning arrived. For the first time since it was activated, I was forced to turn off my DBS system. As the orderlies rolled me out of pre-op, I handed the DBS remote control to my teen-aged son with strict instructions to be in post-op when I woke up so that he could turn me back on. No loitering at the faux-Starbucks in the hospital lobby for him.

The result from de-activation was almost immediate. As they rolled me into the surgery, I felt my back and leg muscles painfully contract with an almost spring-loaded tension. My muscles finally relaxed as the anesthesia began to work. I woke up in the post-op to delight of my son who was happy to re-activate the DBS system. Heavy is the hand that bears the DBS remote.

As luck would have it, my recovery time corresponded with the death of Elizabeth II. I was able to watch her entire funeral guilt free on Monday. Not that I am much of a Royals fan (British nor Kansas City), I admire the Queen for her role in keeping the Soviets at bay. The very presence of a functioning European monarchy posed a constant challenge to communist doctrine. Plus, you cannot beat the Brits for royal funeral pageantry. They elevate it to performance art. I also admired her work ethic. She was working, greeting Britain’s new prime minister, just two days before she died at age 96. I wonder if she called the new PM’s attention to those NHS wait times.

Parkinson’s is a highly individualized disorder. I have met others who have DBS implants that do not seem to work as well as mine. This could be a result of many other health factors that impact a person with Parkinson’s. Considering my slow level of decline, I feel that I had the surgery at about the right time. I might have benefited more from having it a couple of years earlier but then I would have missed out on the technology advances in DBS programming. For those of you thinking about it, don’t linger. There is no better time than the present.

1. The Dark Corner is an ill-defined area located in the mountainous northeastern corner of Greenville County, SC noted for the production of illegal whiskey.