My journey with deep brain stimulation for Parkinson’s, part 1
In the first of a 4-part series, a columnist describes her initial DBS surgery
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.
First in a series.
You know how people say “It’s not like it’s brain surgery” about something hard to do? Well, for me, a difficult but important turning point in my journey with Parkinson’s disease was brain surgery — specifically, the deep brain stimulation (DBS) surgery I underwent in October 2019, just over six years after my diagnosis of early-onset Parkinson’s at age 36.
I’m lucky to be able to say that DBS has changed my life in all the best ways. Not everyone will have the same results, but I felt a lot better when it was all over. Still, it’s a long process with many considerations and various hurdles. I hope that sharing my experience will provide insight into the process.
The morning I was scheduled to have the surgery, we arrived at the hospital in downtown Boston just before 6 a.m. Soon enough, I was in a hospital gown, having my entire head shaved. I knew that’d be a possibility and had cut my hair short, but I still found it pretty shocking to have a medical resident I’d just met shave my head in the wee hours of the morning.
Something between hearing and feeling the noise
Next came the “halo,” a kind of metal frame (that felt like a cage) attached to a patient’s head to keep everything steady and aligned during the surgery.
The halo is anything but angelic, but it was part of the process for implanting the Medtronic DBS device I received. The halo has little bars that go tightly into the ears before it’s attached to the head with four screws into the temple area and the back of the head. They numbed my scalp before putting it on, but it was still profoundly uncomfortable and painful until they could remove the ear bars. I was glad I couldn’t see myself in it, but I still avert my eyes when I see halos or depictions of brain surgery on TV or in movies.
Next, I was off to have a presurgical MRI to guide the surgeon while making the final plans. Even at 7:30 a.m., there was a line to use the MRI machine, so I had to wait 45 minutes in my metal cage in a cold basement hallway, trying to breathe and stay calm. My type of procedure would be done while I was awake, so this wait was just more of a long and surreal day.
With the MRI finally done, I headed to the operating room. I’ll spare you some of the details, but I will say that I experienced no pain. However, the sensation of having someone drill holes in your skull while you’re awake is the most bizarre feeling ever. I sensed something between hearing and feeling the noise. Oddly, I wasn’t scared. After all the presurgical testing, waiting, and preparing, I was just glad to be there.
The goal of the first surgery was to implant wires into a specific area of my brain and test them to make sure they worked. It took several hours, but finally, the wires on the right side were in. The left side didn’t take as long.
I joked around with the doctors and nurses through the whole thing. They had me smile, speak, and raise my hands to make sure everything was positioned correctly. I laughed when the anesthesiologist offered me a wad of gauze wrapped in surgical tape to bite on during the drilling. The irony of thousands of dollars of medical equipment going into me while I was biting on a 50-cent wad of gauze especially amused me.
Then came the best part: The representative from Medtronic turned on the system to test it. I felt a flood of relief and relaxation I hadn’t experienced in years as the stimulation let my muscles relax from their usual rigidity. That moment made being awake through an extremely long day of surgery worth it. Although the sensation faded when they turned it off, I knew at that moment that I’d get at least some relief from the procedure.
I still had to spend a night in the hospital, get another MRI, and have another surgical procedure a week later, along with overcoming other emotional, medical, and physical hurdles. Still, one surgery was behind me, and I had high hopes for the outcome.
Parkinson’s symptoms and my preparations for surgery No. 2.
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
Declan Clarke
I am glad you had the procedure and It seems to be a success looking forward to the next instalment. I have Parkinson for 15 years and I would like to have the procedure(DBS) I do a lot of exercises and it seems to be a great help living with the disease.
John Hartley
This is a fantastic article. It answers many questions and provides a very relatable description of the process. I can’t wait to read the next installment.
David Binks
Mollie
Omg, I just read your column. Loved it. I had DBS done back in 2012..
My diagnosis was dystonia not Parkinson's though they have many similarities. The one thing that rang true about your article was the 50 cent wad of gauze!! I laughed as well as this inexpensive throw away thing was used in such highly complex operation. Back then, it was performed in 3 surgeries as they did each side separate and the final implant to Medtronic devices.
And that Halo!! Nothing heavenly about it at all.!!
Keep up the good work
David Weber
Sounds about the same procedure for my 2024 DBS surgery. Best decision I ever made and was life changing! Strongly recommend Medtronic’s for your device. Way ahead of the competition being able to track my tremors online.
Michael E Speare
Mollie, my surgery was a bit different as it was done in three separate surgeries and I was mostly asleep in a twilight. I did get to hear and sense the drilling but I had seen a few youtubes so I was not surprized. I was excited when they awakened me to do the testing to verify correct placement. It was only a minute or two but the glimpse into what I could expect was exciting. I had tremors for more years than I can remember. After a few primaries blew off these symptoms I was treated for ET by a neurologist.who prescribed primidone. I eventually got to 15 pills a day which made me sleepy but was a losing battle with the tremors. I was then referred to Cleveland Clinic who made an additional PD diagnosis in 2017. Sinemet helped immensely but I was recommended for DBS in 2023, I was 78 years old then. I had bilateral VIM placement. Surgery and care were fantastic. Yes, there were some challenges during recovery but all relatively minor. My first programming session relieved 95% of the tremors on my left hand. I will admit, I cried like a baby, after so many years of tremors, I still get a little teary eyed when I think about it. I celebrated with a bowl of soup for lunch. I can now read my handwriting, type on the computer, and play Jenga.. I feel blessed and encourage others to consider DBS as life improvement option. Doctors do not recommend this surgery lightly. I spent two days of testing to see if I even qualified for the surgery. I still take sinimet for PD but no primidone.
Donald L. Stegemoller
Thank you, your story is encouraging, look forward to part 2
Al
Thank you for sharing your journey,
I just went for DBS Surgery, however I was completely asleep throughout the whole procedure. . I don't even remember going into the operating room or mri. They put me out in one of the OR side rooms. In about a week they turn on the device, I'm hoping it receives the ridgity.
Best
Al
Matt Tenner
I also was diagnosed with early onset parkinsons at the age of 48 and four years ago I underwent the DBS surgery. My experience was a bit different. Instead of wearing the halo attached to the head and ears, a couple months prior to the surgery, my surgeon had the device custom 3-d printed so that it fit exactly where he needed it. The surgical implantation of the rods and the device went pretty quickly. I too was amazed at the relief offered by the DBS as it basically was able to cancel out any dyskinesia I was experiencing prior to the DBS surgery. I got almost 4 years out of my first battery, and recently had the battery unit replaced with one that I charge once a month via bluetooth.
Michael Kinnett
I had DBS last year in 2024. Your description is spot on regarding the process and feelings. I am still seeing my doctors every month to "tweak" my new equipment while searching for the most beneficial settings with the Medtronic system. My tremors are almost non-existent, some dyskinesia and lower lip stiffness but I don't regret having the DBS and feel confident I will eventually find the magic setting with the equipment. Thank you for sharing your story and I look forward to hearing more.
Jim Horrigan
sched DBS 3-13. Thanks for the informative article Mollie,
joe
Thank you for being so honest about your procedure. Love your graphic account. Now thinking of getting it myself. Can't wait to hear the rest of your account.
Judith clarkson
Very interesting articles I will try anything as I can't walk without fear of falling. Would this treatment be any good for me I am 76 years old thank you
francisco manuel goncalves
Hoje, passados quase 4 meses(cirurgiaDBS) 11/11/2024, sinto-me um homem novo. Não foi preciso a tal gaze de 50 centimos na boca. Não sou herói, nem era essa a intenção. As pessoas que efectuaram a cirurgia, foram de tal maneira competentes,que nunca mais me esquecerei. Julgo pelo que vou lendo que ainda não existe outro procedimento, menos evasivo.Como tal, o meu conselho é, se tiverem condições optem pela cirurgia DBS.Nem vale a pena falar na diminuição da medicação.