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What Are Your Experiences As A DBS Patient?

A MyParkinsonsTeam Member asked a question 💭
New Milford, CT

It has been a year this month since I had DBS surgery and I have a few questions for those on MPT who have also had DBS surgery.
How old were you when you had DBS surgery? How many years since you had DBS surgery? Any problems after the surgery you didn't expect? And how long did the improvements last?
Although I have not regretted having this surgery, I kind of wonder if I would have done better if I was younger.

October 3, 2023
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A MyParkinsonsTeam Member

Hi Roxy I was 65 when I had my DBS surgery. I had it done in 2019. My only problem I do experience now is that sometimes my head hurts upon awaking near where the wires were put. Bean

October 4, 2023
A MyParkinsonsTeam Member

I was diagnosed at the age of 47, had my DBS surgery in April of '22 at the age of 60. I am still taking carbadopa/levadopa 1.5 pills every 3 hours. When the pills wear off, I move slowly, but the tremor is gone and my speech is better. While it isn't the results I would have liked, it is still better than prior to the surgery and I am glad I had it done.

I also have some itching around the wires and the implant.

October 17, 2023
A MyParkinsonsTeam Member

I have incessant itching around the wires

October 4, 2023
A MyParkinsonsTeam Member

Roxy,
I was 55 when I was diagnosed and had my surgeries in Sept/Oct '21, when I was 57.
The only real problem I have is my chest incision is still very thick and sore. But that just may be me.. So far, I am still amazed at the improvements! I'm also glad to have done the surgery, but I have heard that they now recommend the surgery earlier in the disease than later, after symptoms have gotten too bad. I hope you are doing well.
Blessings, Karen

October 3, 2023 (edited)
A MyParkinsonsTeam Member

I had my first surgery last July at 49, and my final surgery was Sept 15. I was turned on a week later. I am medication free as of February and I have not experienced problems with the surgery. The programming adjustments caused me two hospital trips - Dec and Jan, though - because the stim was too much too quickly and made me "seasick" for lack of a better description. I have returned to a routine of: work full-time, driving everywhere, grocery shopping, cleaning my house, taking care of my 10yr old, traveling, doing laundry, cooking... and I do physical therapy twice a week.

I was diagnosed at 43 with Idiopathic young onset Parkinson's. DBS was the best decision of my life! ❤️‍🩹

October 3, 2023

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