Why I decided to have brain surgery

Happy 5th Anniversary to my Bionic Brain

I’m celebrating the decision by getting a new battery for my Percept Deep Brain Stimulator and by taking Iriah dance classes with other adults, who don’t have Parkinson’s Disease. A fact that astonishedd my neurologist (and delighted him, as well.) Surprising doctors, is my specialty. I shocked the previous one, by showing up to the appointment, sweaty from cross country skiing for two hours a mere two weeks post surgery. A perfect snow had fallen, and I felt great. How could I not ski?

No regrets

I have never doubted thr decision. It eradicated the painful, unpredictable, and frankly untenable dyskinesia. Continue reading to learn why it was so awful. Inspite on a long a chronic fear of needles and hospitals, I enthusiastically scheduled the 7.5 hour surgery that required me to be awake and articulate, for the next available appointment, as soon as possible.

This post was updated Nov. 7, 2025. The original was written two years ago.

Disappointed, sort of

I am like Excel without pivot tables: so much data that cannot be analyzed and used. My DBS is underutilized. Yes, my life post DBS is certainly better, but I still live with a great deal of variability in terms of how well I can move every day. I am the most unreliable friend. Thankfully my friends understand. My current neurologist, whom I really like working with, isn’t among the four identified by Medtronic. He’s great for many reasons. But he doesn’t believe there is any need to change my DBS ever again. This doesn’t seem right. The $100,000 DBS system in my brain came with so much potential. I feel like I need to explore it.

My Brain Surgery

I had the newest deep brain stimulation (DBS) device implanted in my brain in November 2020. My neurosurgeon recommended the Medtronic percept system because of its great potential to provide up to four simulation settings for four unique situations. In other words, the stimulation would be different based on my needs. For example, my dystonia is worse in the evening so one would assume that I need a different level of stimulation to treat that versus when I’m sleeping or exercising.

…the Percept™ PC now represents the first opportunity to observe and capture brain signals of interest in the broader population of patients receiving DBS while also delivering stimulation, all outside the research environment. Within the BrainSense™ platform, the immediate benefits of brain sensing and diary functions include implications for programming and correlating symptoms with neurophysiologic features. 

Joohi Jimenez-Shahed (2021) Device profile of the percept PC deep brain stimulation system for the treatment of Parkinson’s disease and related disorders,Expert Review of Medical Devices, 18:4, 319-332, DOI: 10.1080/17434440.2021.1909471

I’ve got the data, who wants to play?

New tech appeals to me. It’s like a new toy for grown-up kids. I need to find someone who’s excited to play with the data my brain is producing. While I live in Medtronics backyard, in a state overflowing with medical professionals, per Medtronic, there are only four neurologists who work directly with Percept here.

As with any new technology, initial high rates of adoption are likely to be seen as clinicians explore the potential for value added to their practices and care of their patients. However, there is an anticipated learning curve that will be required for physicians to familiarize themselves with a neurophysiologic approach to understanding disease and DBS care which may be more time consuming. This combined with the limitations of Percept™ PC in its current form may therefore temper initial interest for some practitioners.

Joohi Jimenez-Shahed (2021) Device profile of the percept PC deep brain stimulation system for the treatment of Parkinson’s disease and related disorders,Expert Review of Medical Devices, 18:4, 319-332, DOI: 10.1080/17434440.2021.1909471

One of the four Percept-trained doctors in Minnesota, was my neurologist who recommended DBS, despite my relatively recent diagnosis. My Parkinson’s disease was challenging. We could not find a medication therapy to treat my symptoms without producing disabling dyskinesia and nimmediate wearing off (rapid on/off cycle). I kept detailed journals and my doctor prescribed almost all formulations of carbidopa/levodopa.

Why I elected to have DBS

My life sucked with only two hours each day when I could kind of move like a normal person.

“On time” is Parkinson’s slang for when you feel great because your meds work and you can move fluidly.

“Off time,” naturally, is the opposite. It’s when you experiencing all your Parkinson’s symptoms either because your meds are not working or you didn’t and take them.

About a year of record keeping (me) and pharmaceutical adjustments (my doc), we knew that eating and exercise caused large and unpredictable fluctuations in my ability to move fluidly, versus being frozen in rigidity (being “off”) or writhing about in constant and painful movement (dyskinesia). We adjusted these independent factors (diet, exercise, and medications) in many permutations. But nothing worked.

My response to medication remained highly unpredictable. I was never quite sure how I was going to feel and move at any time of day. Other than there would be many hours where I was so rigid I could do nothing or writhing in pain with dyskinesia. There seemed to be some unknown variable working behind the scenes wrecking havoc in response to my medication. So three years after the car accident that unleashed my Parkinson’s, I had two hours each day that I could move well. So for the second time, my neurologist recommended DBS.

And I said yes.