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Has Anyone Had Successful DBS(deep Brain Stimulation) For Truncial Dystonia (a Movement Disorder Related To PD)?

A MyParkinsonsTeam Member asked a question 💭
Jacksonville, FL

Along with the usual Parkinisms, I also get a strong cramping spasm in the abdominal area when I try to stand upright without holding on to my walker. I had the DBS surgery hoping to find some relief by finding the optimal electrical setting to disrupt the spasms. But, so far, we have not been able to find any setting that provides any relief. I would love to find someone who has had successful surgery for some guidance.

September 4, 2020
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A MyParkinsonsTeam Member

I had DBS surgery September of 2022 for several symptoms, the most important to me was my axial rigidity. I basically was so stiff I could barely get out of a chair. I was in constant pain. After surgery and a lot of physical, water and massage therapy plus my determination, I can move pretty well. I bowl, exercise (Rock Steady Boxing), garden, sew and can walk as long/far as I want. I know that DBS isn’t a cure it also can’t fix you. You still have to work at getting better, I believe I will be exercising to keep my mobility the rest of my life. I still have strong muscle cramps in my stomach and calf muscles daily, I’m faster to stand, putting weight on them helps tremendously. ☘️💕☘️

May 22, 2023
A MyParkinsonsTeam Member

I had the dbs surgery Aug 2016 and am now waiting for a date to get the batteries re-charged (replaced?). Will I notice a lot of changes?

November 21, 2022
A MyParkinsonsTeam Member

I had successful DBS surgery in October 2022. Since my diagnosis in 2021 (probably have had Parkinsons for 4+ years before that), I have worked hard to do everything in my power to keep Parkinson’s at bay to include a Mediterranean diet, exercise daily, physical therapy and medication. Everything has improved… my movements are no longer stiff, I sleep better, I now can complete a mile in 21 minutes (vs. 35. Minutes), my gait has improved and I’m no longer leaning to one side when in motion. DBS, along with other actions I’ve taken, has made a huge improvement in my quality of life.

July 19, 2023
A MyParkinsonsTeam Member

I've had DBS. And it is a miracle that I'm doing as well as I am. However I still have depression and fatigue and I wish. I could get rid of that but I'm not shaking and I can walk and my mind is nice and clear. But I just wish I could get rid of the depression and fatigue thank you bye

May 30, 2023
A MyParkinsonsTeam Member

With deep brain stimulation, two probes are implanted into your brain and attached to an electrical device which can send different voltage, band width and frequency signals to that location disrupting the undesirable effect such as tremors. That's a very basic description, you can google for more detailed definition.

September 4, 2020

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