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I had the DBS surgery in January of this year. Who else has done this and what are your feelings about it.

A MyParkinsonsTeam Member asked a question 💭
Kent, WA
June 15 (edited)
 · 
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A MyParkinsonsTeam Member

Hi, all!

I had DBS implants done in December 2023, and as I've mentioned multiple times in this forum, it was the best decision I ever made. I'll sum it up simply by stating that since the surgery, I have not taken a single dose of any PD medication. I never took another dose of Carbidopa/Levidopa or Azilect, and to this day, I've still not taken any. My usual comment is that the DBS surgery was, and continues to be, a Godsend! I would strongly suggest that if you are considering DBS, get your ducks lined up and learn all you can about the process, including the known ups and downs of the surgery, the pre-op requirements (which do take a while) and the post-op "new world" you'll be in. It's all good, at least IMHO!

Feel free to ask if you feel I can help in any way.

Joe

June 15
A MyParkinsonsTeam Member

I had DBS surgery at the age of 73 and have not regretted it. I was able to cut my meds in half and some of my PD symptoms have disappeared. However it is not a cure all and I think younger patients do better. Lately my PD symptoms have started to worsen again.

June 15
MyParkinsonsTeam

It's completely understandable to feel frustrated when you've gone through something as significant as DBS surgery and aren't seeing the improvements you hoped for. You're definitely not alone in this experience.

One MyParkinsonsTeam member shared a very positive outcome, saying that DBS was the best decision they ever Show Full Answer

It's completely understandable to feel frustrated when you've gone through something as significant as DBS surgery and aren't seeing the improvements you hoped for. You're definitely not alone in this experience.

One MyParkinsonsTeam member shared a very positive outcome, saying that DBS was the best decision they ever made. However, experiences can vary widely from person to person. It's worth knowing that DBS results can depend on several factors, including:

- Which area of the brain was stimulated — different targets can affect symptoms differently
- Device programming — the settings on your impulse generator may need adjusting over time
- Time — some people take longer to notice improvements after surgery

Since it's only been a few months, there may still be room for improvement, especially with programming adjustments. It's really important to follow up closely with your neurologist if you feel things aren't where they should be.

Don't hesitate to advocate for yourself and ask your care team about fine-tuning your DBS settings — that conversation could make a real difference.

June 15

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