DBS stopped working

[robclem]

I’m looking to see if anyone has experienced similar DBS results,

I had my DBS(GPI) surgery on 7/31 and immediately had positive results before the switch on. It felt like I was cured but I knew that this was the honeymoon phase. After a week or so my symptoms returned until I had my first programming session a few weeks later. Following my first session with my neurologist and Boston Scientific rep my symptoms improved almost immediately and for the next 8 weeks I felt amazing being able to walk normally without any dystonia or dyskinesia. and most importantly I wasn’t experiencing any off periods that had been becoming more and more frequent pre surgery.

Then all of a sudden one day it felt like I was back to my pre surgery symptoms and now feel like I’m having to manage my symptoms with my meds. There is still some improvement from pre surgery symptoms with my dyskinesia gone but I’m having off periods again which bring on my upper torso dystonia and blepharospasm symptoms.

My neurologist said that this is likely the honeymoon period wearing off and is back to experimenting with my medication’s again. Frustrating!!

Has this happened to anyone else?

[limcheeese22]

Had a setting made me feeling like 80 - 85% old me but then only lasted for about 2 weeks. maybe my body got used to it.

now with another settings maybe about 55 - 60 %of old me, still depend on meds. you may need to tweak your setting

[jeeves19]

Yeah sort of. Voice apart - my symptoms have gone but just this last week I’ve been dealing with OFF states a little more than I imagined I would 3 months in! I was told last night to turn the power up. Here goes! 😂🔌

[Jebbie12]

I had DBS surgery 4 years ago. My symptoms were the same for several months . But after changing settings many many times I finally got it right! Keep plugging away at those settings. You’ll get it right again !

[Pdlolo in reply to Jebbie12]

What amplitude reading are in your setting now?

I have 4 sets of 2 ranging from 3 to 6 amplitudes. I use the highest range to keep me from getting stiffed arms and legs but my speech has gotten worse that I couldn’t control the movement of my mouth to pronounce the words correctly.

[robclem in reply to Pdlolo]

I have 3 programs with settings up to 4.5 but u typically use 3.0 as my base setting and increase it to 4.0 as needed.

[Jebbie12 in reply to Pdlolo]

Everyone’s settings are unique to them. Just keep playing with yours until you get the right one

[Pdlolo]

Exactly the same experience I am having right now , 2 years after DBS.

I freeze a a lot more; my off periods happen more often, and my speech has gotten worse that I couldn’t make a regular conversation with anyone.

The main benefits I got from DBS are the disappearance of dyskinesia and dystonia.

Was it worth all the trouble? Physically, yes. After 13 years of PD, no one can hide my dyskinesia. I looked like I was always dancing without music. Dystonia on my left foot’s toes was unbearable that i have to wear special gadgets to keep my toes from curling

Socially, I have to admit I have never been more timid in my life . I rarely go out without my wife by my side. I don’t answer the phone if possible and I stopped playing golf with my buddies.

I hope that Boston Scienctific can come out with a setting that can make my tongue/mouth muscles relax so I can pronounce my words correctly.

Pdlolo.

[robclem]

I recently went to see a TCM doctor and he told me that my o2 levels were low and that my circulation was poor.

I am currently tracking my o2 levels each time I go OFF and without exception my o2 levels drop to 91-93 when I am OFF and go back up above 86 when I’m ON. .

I’m researching breathing exercises and hyperbaric oxygen therapy to see if that helps.

[Hikoi]

Rob I don’t folllow your post. You are tracking your oxgen in your blood right, using an oximeter?

Your results are 91-93%when off and 86% when on. If I have read you right your results are going down when on!! A good result is 95%-100%. Are you reading the pulse rate or oxygen saturation rate?

[robclem in reply to Hikoi]

Sorry should have typed 96