My journey with deep brain stimulation for Parkinson’s, part 2
A columnist describes the microlesion effect, or 'honeymoon' period
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.
Second in a series. Read part one.
In last week’s column, I left off at the tail end of my first procedure with deep brain stimulation (DBS) surgery in October 2019, when I was recovering in a hospital room. I was exhausted, yet got little rest, as is typical when you share a room with another patient. I could’ve been angry, but instead I was amazed.
Before surgery, my gait had been rough. I was slow and shuffled with every step. Manipulating fabric, paper, or other materials was difficult. After the first procedure, when I stood up to go to the bathroom, I could move better, and I could turn around and close the bathroom door by myself. It wasn’t as easy as before I had Parkinson’s disease, but I could still move the curtain around my bed easily enough. These may seem like small victories, but to me, they were huge.
I’d heard from others who’d had DBS surgery about the “honeymoon” period, called the microlesion effect, when the device’s electrodes aren’t yet turned on, but somehow a patient experiences immense relief. I could hardly believe it was happening to me.
I was sent home with a follow-up appointment the next week for my second DBS procedure. My husband and my dad took me home to rest. Pro tip for all the ladies: Get yourself a supersoft hat for the trip home. Your bald head won’t look so scary while you’re walking to the car, plus, it’s cold outside without hair!
When we got home, all I wanted to do was eat and sleep. My dad served me pasta and ice cream, and I mostly slept for four days. Given my lack of appetite and sleep leading up to the first surgery, this rest wasn’t a surprise. I was emotionally, mentally, and physically exhausted. We all were. But I could move.
My gait wasn’t freezing as much as before, I could stand up to walk across a room, and I’d almost forget for a moment that I had Parkinson’s. It was easier to eat and dress myself. I didn’t have to work so hard to move, and my gross motor skills were significantly improved. The honeymoon was in full effect.
Not much is known yet about the microlesion effect, but research is ongoing to determine how long it lasts, how much improvement is seen, and who might benefit. I was just glad it happened to me.
After a week of rest and lots of spaghetti, I was ready for surgery number two. But my DBS journey was far from over.
Next week, I’ll discuss the second surgical procedure and the end of my “honeymoon.”
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
Bonnie folker
Had my DBS surgery last December. They no longer shave your head just small clips where the surgery site is. Since I was awake for the first surgery I went home shortly after. Very little pain I found the entire procedure fascinating. And show my "brain" pictures to anyone who wants to see them😁
Karen Davis
I’m hoping for the DBS surgery soon but changing to a closer neurologist/ neurosurgeon. I can no longer eat soup and other various items, can no longer write and cannot it on any makeup or nail polish as I was I used to doing, because of the tremors and jerking. Thank you for all your input.
Gerald McCarty
I had my DBS surgery in .November of 2024, both under sedation and my head was shaved by my roommate/ care partner before I went for my first surgery. I had no honeymoon period to speak of. I took my meds the same as before the surgery. I have changed meds since my first programming session as I was switched to Crexont, which means longer time between doses and a slight decrease in total C/L. After having my implant turned on, I am experiencing much better on time and much less dyskinesia. I am glad I had DBS.
Rosemary
My DBS surgery is two weeks from today. I can’t wait!
Cindy Miller
Our son (then 44 diagnosed @ 33) had DBS 2:/24
Only 1 trip to the hospital
Honeymoon period for sure. Dyslexia has improved Greatly but FOG is torture to watch. We were told that FOG is the hardest of all to treat. Jim’s conditions are, Sadly, at a point he is unhireable. Have filed through a disability lawyer permanent disability. 1 rejection 1 appeal rejected
Too young. Too educated (Masters) next step in person lawyer. Would never complain about the surgery I & a manufacturer he did not use feel he was a candidate long before the actual surgery. But a combination of reluctance & more “ options of meds in our back pocket” - it was his decision as to when. I would hope If it had to me ( and God knows from the bottom of my very being wish it were me or my husband (84) - Simply Not Fair To Our Young Son
Anne Wray
Hi Mollie, I enjoyed reading your article about DBS. I had a similar experience with the procedure. It has been a year now and my medication dosage is cut in half, took two visits to have it programmed and all is good!! I do still 'fall apart' in the evenings though. By that i mean I get slow in my movements and just want to sit on the couch!! But then again I am still working and have a 14 daughter and three cats at home!! Thank you for sharing your experience!