Concerned

[dhill]

Husband had DBS, device not turned on yet, but tremors & anxiety aremuch, much worse since the surgery, anyone else experience this?

[koshca]

Yes, I have the same.

[ConnieD in reply to koshca]

Did your symptoms improve once the device was turned on? Thank you!

[koshca in reply to ConnieD]

I had second surgery to replace the leads. With turning it on, to tremor, but still have another offtimes_---- terrible nasty feeling inside

[ConnieD in reply to koshca]

So sorry to hear that!

[dhill in reply to koshca]

Did it get better after device turned on?

[koshca in reply to dhill]

Second surgery

[ion_ion]

It kind makes sense probably because of the stress involved. I hope after the device is turned on and properly programmed everything goes good for him.

Good luck!

[dhill in reply to ion_ion]

Thanks! now tremors are 10x worse than before, & can't get them stopped even with more meds. Will keep everyone posted after device is turned on

[Enidah]

I was thinking the stress of the surgery alone could cause more prevalent symptoms. also I think we have to make sure we're taking enough meds afterwards. Maybe he needs a little more than usual due to the stress until they get it turned on. Good luck!

[dhill in reply to Enidah]

Thanks, just 2 more days to wait!

[royal57]

My wife' s symptoms changed slightly after DBS (just completed 10/2020). The unit was turned on (11/2020) and it's been very good so far. I know it seems like forever from initial DBS procedure until it's activated but it was very worth it for her. Sometimes it works right away and other times it can take months of trying various programming/settings. Good luck.

[chartist]

People have reported increased symptoms from the anesthesia used during surgery, which may be a contributing factor which should diminish with the passage of time.

Art

[pdpatient in reply to chartist]

***EDITED***

Art, my previous Gastroenterologist has told me that a number of her Parkinson's patients that she has performed Colonoscopy on while under propofol anesthesia have reported total relief from Parkinson's tremors for several weeks after the procedure. She said that her mother was also afflicted with Parkinson's and she got to observe first hand the same results that some of her patients had reported. She had no particular opinion one way or the other and never solicited a response from her patients, but she did record their perception or observation in their chart if the information was volunteered.

I am not sure if the reason for the experience that she reported was due to propofol or an ultra clean gut🙂. This was in 2014 and I had just been MDS second opinion diagnosed. I didn't know enough about the disease at the time to ask the right questions. However, I have never followed through with the colonoscopy. I intend to have one after the pandemic has abated.

[chartist in reply to pdpatient]

What I mentioned was drawn from several reports on this forum and articles like these :

parkinson.org/sites/default...

apdaparkinson.org/article/s...

Art

[pdpatient in reply to chartist]

Ok, I will read them. I would expect that in a forum as large as ours, perhaps someone might have actual experiences to share? I am terrified of a colonoscopy BTW 🥺

[JeffroC]

My tremor is worse after the dbs if turn my battery off... When I turn it on, the tremor is over 90% gone.