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

[MPPD in reply to Stepinsi]

Can you turn the DBS off and go back to medication or medication with pump?

[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!

[florence9 in reply to Sherry1960]

thankyou

[gingerj]

Hi florenceHas your medication level changed much since the dbs was first switched on. Im guessing that after 18 months it might have.

Im struggling with all day dyskinesia at the moment. The Neurologist says i have to make small adjustments in meds and or dbs. Ive only taken 1.5 doses out so I decided to try turning the DBS off for half a day. It didn't affect the dyskinesia but i didnt feel my PD symptoms worsening either.

However im only a month in, not 18 months!

Hopefully you'll get back to your more active self.

[Juliegrace in reply to gingerj]

You turned it off??? Is that what your neurologist meant when he/she said to make adjustments?

[gingerj in reply to Juliegrace]

No. I decided to try it myself. I was tired of the dyskinesia. But turning it off didn't help anyway

[whitdemo]

I'm so sorry your are having these challenges.This is so difficult Im sure. My husband got DBS 2 years ago at UCSF ( san fransisco) and it has been very positive. We feel he has a really quality neurologist as well that has been able to adjust his meds well throughout his dbs adjustment.his main symptoms were tremor, slowness, and stiffness . However, It has been important to get the programming just right, and I know that takes time for some folk's body to adjust, and the quality and knowledge of the programmers is important too. In some of his programming apt.s' his voice and speach would get impacted for sure...but in the appointment they were able to make tweaks . We did have one episode after a new programming was set, he developed dyskenisia, but with reprogramming that went away. So the programming piece is so important. He uses medtronic and he has 2 leads . There are so many variables with dbs..like in what area were the leads placed etc. He does use CBD on the 2 to 3 times a day, and feels it is very helpful not only with tremor but mood and sleep issues as well, and its got good anti inflamatory agents. sending you supportive thoughts and prayers

[florence9 in reply to whitdemo]

Thanks for your reply. I've now seen the Neurologist and it seems there is nothing they can do. With hindsight I wish I hadn't had it done.