How I’m doing 3 years after deep brain stimulation for Parkinson’s
Comparing the severity of my symptoms before and after surgery
Note: This column describes the author’s own experiences with deep brain stimulation for Parkinson’s disease. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
It’s been three years since I had deep brain stimulation (DBS) for Parkinson’s disease, so I thought it was time to revisit the surgery and assess its impact on my life.
I was diagnosed with Parkinson’s in 2015. When I first heard about DBS, I thought it was a last-resort sort of treatment, so I didn’t pay it much attention. But as my symptoms worsened, I learned more about it and eventually concluded that it was the best option for me.
After the surgery, my excellent neurologist warned me that patients often forgot how bad their symptoms were before surgery, so they’d start complaining about minor issues and not focus on the positive impact of DBS.
That day, I went home and wrote a list of all the changes I’d noticed. I dug that list out today to see where I stand three years later.
Then and now
Tremor: Before surgery, I had a high-amplitude, unpredictable tremor, mainly in my arms. It would leave me breathless. Now, I still tremor, but not as often, and the bulk of it is in my feet and legs, which doesn’t bother me as much as having it in my arms. The other day, I threaded a needle, which I wouldn’t have dreamed of doing three years ago.
Medication: Before surgery, I took carbidopa/levodopa every two hours around the clock. I also used the Neupro (rotigotine transdermal system) patch to deliver medication, but it gave me a rash, was expensive, and had to be changed every 24 hours. Now, I take carbidopa/levodopa four times a day, and it’s tremendously freeing not to be concerned with such an onerous medication schedule.
Pain: Before surgery, I had neck pain for years. Right away after DBS, my neck pain was gone, and, knock on wood, it remains gone.
Stiffness: Before surgery, I was super-duper stiff in my neck and shoulders; this started even before my diagnosis. Now I have just a bit of stiffness in my neck and shoulders.
Sleep: Before surgery, I couldn’t sleep through the night, and I’d wake up several times with a tremor. Now I sleep through the night.
Walking: Before surgery, I had problems with my toes curling. Initially, right after surgery, my toes stopped curling, but about two years ago, they started to do so again. I’m currently getting Botox injections every three months. The jury is still out on whether this treatment is helping me, but I can still walk quite well.
Slowness: Before surgery, I moved with turtle-like slowness, a condition known as bradykinesia. The slowness improved initially, but now I’m definitely slowing down again.
Appetite: Before surgery, I lost my appetite as eating just became too tiring. I lost quite a bit of weight. Now I’m hungry again, and though I regained most of my weight in the first two years, it recently started dropping again.
Fatigue: Before surgery, I was exhausted. Today, I still am!
My confidence is something I didn’t put on the list but should have. Before I was diagnosed with Parkinson’s, I did a fair amount of public speaking, taught cooking classes, and loved participating in conversations. Before DBS, if I did any public speaking, my tremors would go wild, which was awkward and a bit embarrassing for me. My confidence took a nosedive.
After DBS, I started participating in discourse again, and my confidence soared. I’m in a weird space these days because it’s not my tremor that slows or stops me, it’s my voice. My speaking pace is slower and a bit thicker, which is annoying, so I participate less than I want.
So the big question is am I happy that I had deep brain stimulation surgery for Parkinson’s? Yes, I am. Before I had it, I’d lost hope. I couldn’t imagine a day without tremors. I couldn’t imagine a day not being ruled by medication. I took neck pain for granted. I had given up on getting a good night’s sleep and enjoying meals. Now, I feel so lucky to look back and know I made the right decision for myself and my family.
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.
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Comments
Marjorie
I’m so glad you had a good outcome. My husband had DBS in 2007 for the left brain and 2009 for the right brain. He takes carbidopa/levodopa once a day. For many years he did not need any medication. Before surgery C/L did not help him at all with the tremor and maybe just a bit with stiffness. His neurologist put him on the highest dosage he had ever used on anyone and the side effects were extreme with no affect on his PD. It was most despairing.
Before surgery he tremored all day long on his right hand and his foot. The muscle pain was very hard on him. Later the symptoms developed on his left side which led him to get the second surgery. He is most grateful for the DBS. He has had PD for 22 years since diagnosis but likely had it many years before that. He continues to walk with no assistance but no longer drives. One thing DBS did not give him was ability to have a small motor skills return enough for his hobbies of wood carving and camera repair.
He does keep up with regular exercise through rocksteady boxing as well as working out and using a stationary bike at a gym.
Christine Scheer
Thanks so much for sharing your husbands story!
Reese Carroll
Thanks for sharing your experience with Parkinson’s and the benefits of DBS. Mine is very similar and honestly, the DBS saved my sanity and my life. I encourage others to take a close look at DBS as a way ro get most or much of your function back. Who knows how long it will last but, it sure beats the other alternative.
Christine Scheer
Hi! Yes! Thats how I feel! I felt like I'd been given a second chance at living.
David Salahi
Thanks for sharing all the detailed info. This will be very helpful for people considering having the DBS treatment.
Christine Scheer
I hope it will be helpful. I know that when I was considering surgery, I really wanted to know all the details. I'm certainly not perfect, but still feel so much better than I did before surgery.
Sally Pfau
Oh my! This is just amazing-- all the similarities! I was diagnosed with PD about 10 years ago, when I was 54. I had DBS a year and a half ago with a wonderful outcome! Christine Scheer's "Then and Now" article comparing her symptoms before and then 3 years later was piercingly articulate! I could have "cut and copied" the entire article...every single sentence... and put my name on it, and it would have been 100% accurate (except for the Botox in the toes)! As Christine noted, there were several symptoms that weren't entirely eradicated, and some that have reappeared slowly. Even with an outcome that didn't solve all my problems perfectly, the things that were solved, such as the dyskinesia of a busy kicking left foot, a constantly swaying body, and muscle spasms, were an amazing gift that I'm very happy and thankful for! I have also learned to use Inbrija, (a Levodopa rescue inhaler). It has gotten me up off the couch and out the door to the gym or Yoga classes more times than I can count. My tremors also "go wild" when I have appts., or am in crowds of people...that is when the Inbrija really comes in handy. Thank you all for sharing. I get so excited when I find others facing the same bizarre, weird and sometimes unpredictable struggles that don't make much sense together....I feel a bit more human for a minute! It gives me hope! Thanks!!
Christine Scheer
Hi Sally,
Isn't that an amazing amount of similarities! I'm happy you could relate. Thanks for taking the time to read!
Margie P
I am holding off getting DBS surgery because I was concerned that it would wear off and I would have nothing left to turn to as my Parkinson's worsened. After reading your post, I feel DBS may help my neck pain, stiff back and shoulder and my having to take 2 Rytary Capsules every three hours to control my hand and leg tremors on my right side. I do play pickleball, 2 hours a day, 5 days a week, but not without depleting my energy for the rest of the day. However, I feel the Pickleball helps my balance and keeps me moving. I was diagnosed in 2011 and so far, the C/L does control the tremors so I can function normally, but not without neck and back pain which I just basically live with. And taking meds every three hours is getting old.
Steven E
My wife and I both had DBS in December 2023, together, same day, same OR and same surgeon. Dr. Sheth at Baylor College of Medicine in Houston, Texas. We live in North Carolina but my wife has family in Houston. The surgeries for us were both asleep DBS. I credit God with the outcome. It has been absolutely, without a doubt, a miracle.
https://youtu.be/Xz0hlJ6mzD4?si=L5zvAUVprlSILVyn
Dr. Sameer Sheth targeted the STN for me, and GPI for my wife. She has gotten tremendous relief from dystonia in her left shoulder/traps however, she takes more Rytary than before. However, she says the pain relief and sleep issues make it all worth it.
Me, my tremor is gone. 26 capsules of different meds down to none so far. However, it's only been 6 months since our devices were turned on. Boston Scientific is the maker and we have remotes to adjust or even turn off on our own. Although, I am more and more reluctant to turn it off as the difference is humbling to say the least.
Jesus Christ is the reason that my life is where it is now. I don't deserve these blessings on my own merit. Thankfully, there is God's grace. John 3:16 comes to mind.
Also, we just did a morning show in Houston and I let the anchor turn my device off!
https://youtu.be/fblmfBaM5Ts?feature=shared
Christine Scheer
Hi Steven, I watched the videos you included - what an amazing story you both have! Thank you so much for sharing!
Christine
Christine Scheer
Hi Margie,
I enjoy playing pickleball as well. Good luck with your decision on DBS, it's a big one! I'm glad I had it when I did.
All my best, Christine
Susan Angel-caregiver
My sister, Connie, was diagnosed in1992. She was exposed to agent orange in Vietnam while working with the Red Cross. ('68-'69) She did not have noticeable tremors (unless taking too much C/L but had the stiffness & slowness & tiredness. She had bilateral DBS surgery in 2011. The difference in her ability to walk was a delight, from the moment the device was programmed. This remained the case for about two years. She began fa.ling and her gait deteriorated to its previous state. The neurologists related that the disease "had developed around" what the DBS device addressed. She still has to have surgery to have the battery changed about every three years.
Rechargables from "the outside" were not available in 2011. At any rate, she had two years of a near normal gait which was wonderful for her.
Analeah
I've had Parkinsons since 2013..my Dr recommended dbs. Unfortunately I didn't have a good outcome. First surgery was in July after I had got an infection
August 2nd surgery after that my eyelids puffed up September the surgeon decided to remove it again for infection. So I didn't have a great experience with it. My Dr said if it was to be removed I'd be super stiff. He was right about that .
Christine Scheer
Hello! I'm sorry to hear that DBS didn't work for you. Thank you for sharing your story. It's important that people hear all sides.
Christine
Ian Fleet
You are probably a very resourceful person who never let the downside of life get to themselves. I admire you for not sitting down and writing about all the possitives and possibilities that have been given to you....
Mike Shorr
Thanks for your post. I was encouraged to learn one might remain mobile for so many years.
All the best
M