Experiences with

Deep brain stimulation (DBS)

I had DBS 1 and half years ago. It's been a disaster. Prior to having it I could be fairly active. I was experiencing an off period where I could hardly move. So, I had the DBS and the result was I can no longer walk, and now I have lost my voice. Has anyone experience of switching the DBS off?

Can anyone who has had DBS and also had/has Restless Legs Syndrome as part of their Parkinson's symptoms tell me what happened to their Restless legs after DBS?

So my question is this: if DBS reduces the severity of my main symptoms of rigidity and bradykinesia, then wouldn't I necessarily take fewer meds post-DBS? If post-DBS I am still taking up to 5 1/2 tablets of Sinemet, then what would be the point of DBS?

https://neurosciencenews.com/fda-parkinsons-dbs-28438/

A recent study indicates that DBS may not only reduce symptoms but could also potentially slow the progression of the disease—good news for individuals with DBS and an important finding for future treatments. Rhonda L. McFleder et al., 2025.

I’ve written to several PD, non-DBS friends who have claimed that despite having had PD for a long time, they’ve never come across this phenomenon. This convinced me that the DBS is the culprit. So whilst I’ll now contact Bristol, if anyone has had anything similar I’d like to hear from you.

So i'm going to trial lowering my levodopa by baby steps...and start thinking seriously about DBS. Since we don't know to what extent Medicare will cover Vyalev, and my guess is they'll put up as many roadblocks as possible, it may just make more sense to go ahead with starting the DBS process.

I began my journey to have DBS a year ago. I have had Parkinsons for 12 years and after a really bad fall at the end of 2022 I finally worked up the courage to request the procedure. However my condition is complicated by damage to my spine caused by the fall!

I’ve started the process to have DBS. My question is to those who have had the procedure….does DBS relieve this type of muscle strain? Thank you

Hi, I just had DBS and am looking for a P/T that specializes in PD. I am in Northern New Jersey but it seems like all the qualified people are in NYC. TIA.

Read the story : https://www.scientificamerican.com/article/new-form-of-parkinsons-treatment-uses-real-time-deep-brain-stimulation/

si=bIdoBFZ6JCL94ZCz above link talks about DBS, Duodopa, Vyalev and Focused Ultrasound, including patient feedback . I thought it’s a useful information to share. Laura

There are many of you or your loved ones who have had DBS. Your experiences are scattered around HU, and it becomes very difficult to search and refer. Please if you could share your respective experiences and current status here, it would all be at one page for reference.

I had DBS in late August. I lost 20 pounds waiting. I had bradykinesia mostly in the lower extremities.

My Partner had the second DBS surgery last week. Installed Medtronic. When is the equipment tuned to experience the benefits? Does it need to be tuned regularly or only once? We are hoping for a great outcome. She is female 56 years has had Parkinson’s for over 10 years. Thank you Richard

There was a post to the technical paper in Nature Medicine a few weeks ago about an innovation to traditional DBS. Adaptive DBS involves putting in brain sensors to automatically increase or reduce the amount of stimulation.

My neurologist has recommended for DBS . As per the data ,I am informed that the success rate is 90%.Here also the neurologists are divided in two. Few says that medicine will continue even after DBS while other say no.

The local hospital performs “awake” DBS. I’ve had several back procedures over the past 18 yrs where I was lightly sedated but no anesthesia . In 3 cases I went vagal and passed out. The procedures were aborted.

Since EMPs (electromagnetic pulse) can disrupt electronics, does anyone know if an (EMP) can potentially fry the electrical components present in my DPS apparatus? Sources of of EMPs include Nuclear explosions or massive solar flares. I guess my potentially fried brain is the least of my problems

As I get closer to one of the "Big Three" procedures- Dbs, Vyalet pump or PTT-Fus, I'm trying to get a feel for the total amount of levadopa (c/l or c/l + mucuna, etc..) people were taking before and now after their new selves are up and running.