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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone that had DBS care to share their experiences?

A MyParkinsonsTeam Member asked a question 💭
Gloucester Point, VA

I'm talking with my neurologist about DBS or focused ultrasound! Both sound promising but I'm leaning towards DBS due to my pacemaker but I'm scared of either one! Doc says could be even possible to come off of c/l thereby no Dyskinesia. Anyone with comments?

April 27
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Reactions
A MyParkinsonsTeam Member

Russell6, I did not have tremors I had dystonia but DBS is designed to take tremors away. My doctor said it works great on people with tremors. Constipation your out of luck. Bean

April 30
A MyParkinsonsTeam Member

Russell6, I had DBS surgery in 2019 and it did correct my dystonia completely but many of my other symptoms it did not help. However I still have to take meds, one carbi-levo every 2 hours, thats 11 pills a day. I would be happy to answer any specific questions you may have. Just ask away. Bean

April 28
A MyParkinsonsTeam Member

Bean did it help with the tremors?Tremors and constipation are my biggest concern

April 28
MyParkinsonsTeam

It's completely understandable to feel scared — this is a big decision! The good news is that many people with Parkinson's have shared really positive experiences with DBS.

One MyParkinsonsTeam member said: "I had deep brain stimulation to interrupt progression, and it was the best decision I have ever made." Another Show Full Answer

It's completely understandable to feel scared — this is a big decision! The good news is that many people with Parkinson's have shared really positive experiences with DBS.

One MyParkinsonsTeam member said: "I had deep brain stimulation to interrupt progression, and it was the best decision I have ever made." Another shared: "I wasn't sure if I wanted to be awake during surgery, but I'm so glad I was. The moment they touched the correct spot, the tremors stopped, and I felt at peace." Your neurologist's point about potentially reducing levodopa is well-supported. DBS can help the brain maintain more normal movement activity, which may allow for a lower levodopa dose — and less dyskinesia as a result. That said, it's important to be aware of potential side effects. These fall into two categories:

From the stimulation itself:
- Lightheadedness
- Vision problems
- Speech difficulties
- Numbness or tingling
- Balance problems
- Mood changes

From the surgery:
- Infection
- Seizures
- Bleeding in the brain
- Stroke
- Breathing problems The brain area targeted also matters. For example, stimulating different regions can affect symptoms like depression differently, so your neurologist will tailor the approach to your specific needs.

Definitely keep that open conversation going with your neurologist — they'll weigh all the risks and benefits with your full health picture in mind, including your pacemaker. You're asking exactly the right questions! 💪

April 27

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