DBS - How long until I see benefits


#1

I was diagnosed as having PD when I was 25, and am now 30. I went in my DBS surgery in December, which all went without a hitch.

Had the first programming session 6 weeks later, where I was set to 1 volt both sides, with the aim to increase the voltage to ~3.5v both sides. Then I gradually increase to 2v, incrementing the voltage by 0.1 every 3 days. 

I have just had another programming session, 7 week after the last one. The plan is to increase the voltage by 0.2, every 3 days, up to 3.5v.

My question for those that have had DBS is: How long post-surgery was it before you felt any benefit?

I have been more exhausted, more dyskinetic, stiffer and generally feel worse all round. Is this "normal"?


#2

hi kjimn . i have had dbs 3yrs had my operation at bristol frenchay took me 16months to get the right settings but it is not normal to be exhausted & dyskinetic you should phone up to get re-programed have you got the medtronics dbs also did they give you your own hand set 3.5 volts on each side is high .im on 3.70v on my left & 2.40 volts on right. what meds you on im on Sinemet plus 125mg  at 8am 62.5mg 10am 125mg 12pm 62.5mg 2pm 125mg 4pm 62.5mg 6pm 125mg 8pm then 250mg sinemet slow release. its hard work to get it balance right but when its right you know.i used to go in get re-set feel great then two days later tremors back .then have to go back in again.i used to mess around with my meds quite alot you also know when there right..ie if dyskinetic on right side after taking meds and tremor good reduce meds .if no dyskinetic and tremoring up dbs on r/side .you need to up 10amps at a time slowly .then if start throwing arms out no control down amps so back in control ,if tremor still there up  meds next day at time you was bad ie meds last 4hrs so do this every 4 hrs to you get it ok ! my pd was very argessive i have full control of my tremors now but my right leg drags so do not expect full control again but your get there in the end.BUT PHONE UP MAKE APPOINTMENT TO GET RE-TUNED I HAD TO GO BACK AND FOURTH 8 TIMES IN FIRST YEAR


#3
hi im also waiting for a battery change was looking at the vercise 25yr rechargeable battery but they are not quite ready as they need a attachment for the medtronics activa to vercise unit so maybe next time how 3yrs go so quick wow