Deep Brain Stimulation - DBS Thread

[JayPwP]

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.

[JayPwP]

LagLag37 gingerj

Jeagar815

Lulover

JerryinSATX

Pauldmd

Gallowglass

gogofloat

jeeves19

florence9

[Gallowglass]

Hi Jay, thanks for inviting me to report back on my DBS surgery turn on appointment which happened today . To say the least I am underwhelmed . But I guess there’s hope.

I don’t have tremors so it’s harder to know if it’s working. The programmer kept testing my wrist to see if it was loosening up. She and the doctor would cheer and act excited each time my wrist loosened up .meanwhile the painful dystonia in my toes, hip, and shoulders wasn’t helped at all and I can’t walk any better and my mouth still hangs open when I’m not gritting my teeth . I went home feeling exactly the same as I’ve been, trying not to cry. My husband says I don’t have zombie face. I’m to take the meds the same as before and continue using the walker. . Supposedly there’s a good chance of improvement with time. Now I have to tell all the people who have been praying for me and caring….over and over and over again .

[JayPwP in reply to Gallowglass]

Thank you for your time. Please keep us posted on your progress.

[Juliegrace in reply to Gallowglass]

Many of my improvements took time. My programmer says the program or changes need to marinate, especially when I would adjust my settings too often. Don’t give up hope yet. I consider my results to be very good, but I still have a couple of breakthrough symptoms that are plaguing me.

[gingerj]

Sorry to hear of your poor responce to DBS. Which device did you have and was it SDN or GPi area of your beain thats being stimulated?