My journey with deep brain stimulation for Parkinson’s, part 4
After I waded through my doubts, my system was turned on — and worked!
Note: This column describes the author’s own experiences with deep brain stimulation surgery. Not everyone will have the same response to the procedure. Consult your doctor before considering any particular therapy or treatment.
Last in a series. Read parts one, two, and three.
In part three of this series, I’d just left the hospital after my second surgery. It was the final surgical step required for the deep brain stimulation (DBS) system I was hoping would alleviate my Parkinson’s symptoms. It was October 2019, six years and one month after my diagnosis with early-onset Parkinson’s disease.
At this point, I’d gone through all of the pre-operative testing and evaluations to make sure I was a good candidate for DBS. I’d made it through a lengthy surgery while awake, when they drilled through my skull and implanted electrodes. I’d endured surgery to implant the DBS devices and run the wires from the top of my head to my chest.
The best benefit so far was the so-called “honeymoon” period, where, for reasons still not well understood, Parkinson’s patients experience temporary but significant symptom relief after the brain surgery part of the process, before the system is turned on.
The actual term for this honeymoon is the microlesion effect (MLE). Not only does it feel good, but the research has shown a link between a strong MLE response and how well the patient will respond once the device is turned on. But there’s no way to predict who’ll respond to MLE, how much relief they’ll experience, or when it will end. People I’d talked to mentioned it lasting maybe three to six days. Mine lasted nine.
For those nine days, I felt better than I had in years. But on day 10, I crashed. I had none of the post-surgical lift I’d been experiencing, and it was like my meds stopped working, too. Physically, I fell silent because the effort to speak felt too difficult. It’d take me 10 minutes to walk the 20 feet from my bed to the bathroom, and sometimes I almost didn’t make it.
It felt like a huge psychological blow, too. I felt like a failure who’d gone through all the surgeries and trauma with such high hopes, only to find out it wasn’t worth it. I’d been looking forward to DBS as a new lease on life, but now that idea felt shattered.
I still had nearly three weeks until my appointment to turn on the device and start programming it, and those days passed incredibly slowly. I felt as if I were hanging on by my fingernails, wondering if I’d made a huge mistake.
Programming my Parkinson’s
I finally made it to my initial programming appointment. The nurse put the transmitter against my chest above the scars and turned on his iPad. The device chimed when it found my implants wirelessly, and he turned me on my left side. A glow of relaxation flooded through my body, and the glimmer of hope lit again.
Over the next two hours, my doctor and nurse, both with extensive experience programming DBS systems, tested both sides of my brain through the four contact points on each electrode, trying different settings to find the right ones for me. I’d walk up and down the hall so they could evaluate my gait, and they asked me to smile, open and close my fists, and do other tests.
Some settings made my tremors and rigidity worse. Some made me tap my toes or flail my arm in the air. One setting made one side of my face fall, as if I’d had a stroke. We stayed away from that one.
Slowly but surely, we came up with a starting point for me to take out into the world. My husband watched in amazement as my movement changed by remote control. I finally realized it had all been worth it.
The journey of DBS has been challenging at times, but it was totally worth it for me. Without it, my life wouldn’t be the same. I don’t think I’d still be working, traveling, typing, or walking without help. If you’re a Parkinson’s patient, I strongly urge you to see if DBS is a possibility for you, and I hope my story will help. Not everyone will have an experience, good or bad, like mine. But it’s a tool no one should ignore in the fight against Parkinson’s.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.