DBS switching off

[florence9]

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?

[Bolt_Upright]

I'm so sorry you are going through this. Thanks for sharing, I am sure this information is helpful to others. Good luck and may God bless you.

[CuriousMe12]

I may be wrong but think jeeves19 may have had his voice impacted.It's an important topic.

[Stepinsi]

worst decision I ever made, my pd was under control until I had DBS , now I fall over and can’t speak properly

[MPPD in reply to Stepinsi]

Sorry to read this. If your PD was under control why did you have it???

[Stepinsi in reply to MPPD]

I was taking 10 madopar tablets a day… I’m only 40

[jeeves19]

Yes. My voice was/is impacted but they created a less powerful channel designed to deliver less obstacles to speech. It’s useful but a pain to jump between the two. No problem with the walking though.

[AGH_1966]

Thank you to those of you sharing your negative experiences - it is priceless information for the rest of us. I am sorry DBS has worked out for you so badly.

[DogsWoode]

Oh Florence, terrible for you! Ahh....So so disappointing.

What are the technicians saying? Surely they must have some answers as per Jeeves below?

Please keep us informed. As others say, you and your experience are important to us fellow PDians. 💕

[florence9]

Thankyou for all your replies. I wonder now about switching it off. It's all got complicated as I have further health problems. I had 2 other opinions but no change. I have an appointment with a Neurologist next week. I'm also wondering about CBD oil. I've gone from being fairly active doing PD warrior to just being in chair all day.

[PalmSprings]

I am so sorry to hear about your experience with DBS. I hope for improvement somehow.

Please know that there are a lot of people just from this site wishing you well.

[CHH1234]

I got DBS surgery done at UCSF last month and it was not just successful, I got my pre-PD diagnosis life , pre-PD energy, stamina back and almost have no motor symptoms, no cognitive issues or fog . The DBS suThe DBS surgery is not practically reversible because you don’t want to

[cgreg in reply to CHH1234]

Did you get the adaptive DBS?

[florence9 in reply to cgreg]

no

[Sherry1960]

How frustrating for you! I had my DBS almost 3 years ago. My speech is affected somewhat and my short term memory as well. Those were two side effects that I was aware of before surgery. I had painful dystonia in my feet and that was my motivation for having DBS. Ask your MDS about adjusting the amplitude. We can’t do much adjusting ourselves. I hope the right setting can be found for you!