The Risks of Brain Surgery

I’ve been under the knife before. Last year, I trusted a handful of medical professionals to keep me alive while repairing the plantar plate in my right foot. It had been hurting for more than a year, and I knew I’d stop running if we couldn’t fix it. So, I chose science. But even minor procedures present themselves with monstrous appearances and lots of potential to go wrong.

The surgeon could damage my foot further. They could apply too much anesthesia and I might never wake up again. Or, I’m sure, there could be a whole range of other possibilities to confront. But the lingering hope that sits on the other side of the anesthesia is reason enough for many of us to trust the process: Maybe our lives can get better. Perhaps science can guide us to a higher quality of life.

DBS and Parkinson's

When my dad decided to move forward with deep brain stimulation (DBS) several years ago, all I knew was that someone would be drilling holes into his head. That couldn’t be good, right? Surely, it could result in swelling or change my dad's personality. Didn’t we learn anything from lobotomies back in the day? But the studies pointed to high success rates and percentages that we simply couldn’t ignore. What if DBS could give my dad his life back?

Dad had always been a force to be reckoned with. He was strong, yet soft. He was like water, slicing through rock with time, but he was unlikely to harm those who stood with him. But I worried about what the surgery would do to him. Would he make it out alive? If he made it out alive, would there be changes to who he was as a person? Would he still be the dad I knew for most of my life? Or would he be unlucky, like he had been when Parkinson’s came to claim him in the first place?

Post-DBS panic

My heart sank when I spoke to my dad after the procedure. Panic gripped him. He was convinced that the surgery made his Parkinson’s worse. He thought he took a risk and lost. Although some Parkinson’s patients receive a brief "honeymoon" phase after the procedure, Dad seemed to be experiencing the opposite. And it reared its head like a serpent in the water, claiming hope to soothe its appetite.

But then the weeks started to pass. Once his brain had the chance to un-swell itself, he and his neurologist programmed the DBS hardware for the first time. And a sense of calm came over him almost immediately. Underneath the glow of the doctor’s office, Dad’s foot stopped shaking. Unless he was hallucinating, the electrodes were doing their job, and changing his Parkinson’s symptoms for the better.

I wouldn’t have thought anything of the resulting change in temperament had it not been for a conversation I had with another Parkinson’s patient recently. One community member shared that she experienced a similar wave of panic. Before she was finally able to program the hardware, she was convinced that the procedure made everything worse. But eventually, the panic eased and the hardware started to do its job. And she knew she’d made the right decision by getting deep brain stimulation.

It wasn’t until I spoke with this community member that I started wondering if the post-DBS panic is more common than we realize. Maybe it simply isn’t recognized as a common part of the process yet. And if we could identify it as such, couldn’t we make the panic lose its power?