I had the newest deep brain stimulation (DBS) device implanted in my body 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 immediate wearing off (rapid on/off cycle). I kept detailed journals and my doctor prescribed almost all formulations of carbidopa/levodopa.

Two hours daily of “on time”

When your meds work and you can move fluidly is called being “on” in Parkinson’s parlance.

After 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.

Three Years Later: Time for a New Doctor?

I feel like 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.

It seems like a good enough reason to change doctors. Or at least explore the options.