Actually. . . it is Brain Surgery
Multivariate statistical analysis? It’s not like it’s brain surgery. Dissertation on the theme of leadership in the plays of Shakespeare? Phfft, clearly not brain surgery. Being a rocket scientist? Well, it’s close, but not as arduous as brain surgery.
But guess what? Brain surgery is.
Previously in this blog I’ve mentioned in passing the possibility of undergoing brain surgery to treat my Parkinson’s Disease. Since December 2018, I’ve been on a journey with my team of doctors not only to massively improve my current condition, but also to see if I’m a good candidate for Deep Brain Stimulation (DBS) surgery. Which is exactly what it sounds like. Electrical pulses that will move through my deep brain to help relieve many of the symptoms of PD, often without the disruptive side effects that come with most of the medications used to treat PD. **
I’m lucky to have access to a local DBS support group. I’ve attended several of the monthly meetings, which are a mix of recent DBS recipients, people who’ve had their devices for 10, 12, even 15 years, and people like me who are considering or are in the process of being evaluated to see if they are indeed good DBS candidates. This group has been invaluable. In addition to other patients, the coordinators often bring in speakers, including movement disorder specialists, neurosurgeons, representatives from the manufacturers of the DBS implant devices, and more. I’ve always had plenty of questions, but the other group members often raise questions I hadn’t considered asking. With so many stories and timeframes represented, group members get a full spectrum of viewpoints.
The one commonality among every DBS recipient I’ve spoken to is that they all say it was the best decision they ever made in their PD treatment. And one that they wished they had done much earlier.
In 1996, DBS was approved to treat tremor in PD. In 2002, the FDA granted approval for the device to be used in late stage Parkinson’s. And in 2016 it was approved for patients at much earlier stages of the disease--those who had been diagnosed for four or more years and/or who were experiencing significant side effects from medication. Current thinking is that the earlier the DBS is done, the more effective it may be, and the longer that positive effect may remain. The general rule of thumb is if your symptoms respond well to PD medications, they will respond well to DBS.
And, naturally, the reverse is also true. If you have symptoms that are not well managed with medication(s), it’s unlikely that DBS will have much of an impact either. DBS also works mostly for motor symptoms like stiffness, slowness and tremor. Speech and cognitive difficulties are typically not improved, and for some people they get worse. The optimal “window” for DBS as I have come to understand it is when you are at a stage when there is a big difference between being “off” and “on” your medication(s), and when you are also experiencing little to no cognitive decline.
I’m happy to report that In the last two weeks I made it through two major hurdles in the testing to see if I fall within that window. The first was a comprehensive neuropsychological exam. Five hours of testing. Lists of words to be repeated back out loud. Groups of numbers to repeat back in order, or in reverse order, or put into numerical order. Make the wooden blocks match the pictures while we time you. Now, remember that list of words? Say as many as you can remember again. How many of the words were animals? Watch the computer screen for 35 minutes and press the buzzer every time a square shows up in the top half of the screen. Now, what were the words on that list again?
Squirrel, Zebra, Cow, Motorcycle, Boat, Truck, Subway, Table, Lamp, Cabinet, Bookshelf, Cabbage, Spinach, Onion, Celery. I’m missing one animal, but hey, it has been eight days, so cut me some slack...
The second test was my “on/off” evaluation. That one was a lot less fun, and is certainly worthy of its very own post, which will be coming soon.
Nevertheless, within a few weeks I should have final confirmation of my suitability to receive DBS, and presuming it’s a Yes, I’ll start working with a surgeon to pick a surgery date. It’s exciting and terrifying and more than a bit surreal. I’ve spent the last six months moving forward in the process while simultaneously trying not to get my hopes up too much. (Even if it’s a No, the next step will be to figure out—the next step.) If I get the green light, I’ll be posting about the device and procedure, and keeping you up-to-date along the way.
I mean it’s not like blogging is brain surgery, right?
**As I’ve mentioned before – I AM NOT A DOCTOR. Some of the good folks at The Michael J. Fox Foundation are, and this video does a great job of explaining the clinical procedure and process. But like everything in Parkinson’s, every bit of the DBS process is unique to each of us. This is my experience and understanding of the PD and DBS journey. Do your homework, talk to your doctor, and don’t rely on my experience to mirror you own.