Tremor much worse and DBS hasn't been switched on yet.

[gingerj]

Hi I am wondering if anyone who has had STN deep brain stimulation had noticed any symptoms worsen in the weeks between surgery and switch on.It seems to be quite a few years ago that I had tremor so bad at night that it kept me awake. But this last week I've had strong right arm and jaw tremor wake me at midnight. The only way to get any sleep is to take another Stalevo. Which takes an hour or so to have any affect. Im three weeks post surgery and switch on is set for 6th February.

[LagLag37]

I had tremors and dyskinesia a few days after my surgery but they weren't really bad. I had my first programming last Thursday and my tremors and dyskinesia got better. A lot better. Left side stopped completely after 5 minutes of programming. I took 3 hrs to do my right side, but it was close to being perfect. Now yesterday and today the right side seems to have gone back to pre-surgery. I have a call into the programmer to see if that is normal. It felt so good on Friday. It will take a little more programming to get it to where it should be. I always was hesitant when people would say I would do it all over again but now I'll say the same thing. DBS is wonderful and I would do it all over again! 🥊😀

[gingerj in reply to LagLag37]

Cheers laglag. That's very reassuring. 🤞

[Juliegrace]

My surgeon said that the STN target can have a honeymoon period, so I would guess that it can also have a negative impact. Mine was the GPI and I definitely had some issues post surgery before programming. I’m two months post surgery and we’re still working out the kinks.

[gingerj in reply to Juliegrace]

I must say the first two weeks I felt pretty much like I did before surgery. Then week 3, to the day, i started with this strong tremor when wearing off. So i guess i did have the honeymoon. Just didn't realise it at the time. 🫤I now look at the tremmor as an obvious target for the medtronics programmer to aim at. Roll on 6th Feb🙂

[pinoka11]

following

[Gallowglass]

God bless you and grant b you hope and peace and courage to persevere ! Things should get better please keep us up to date.

[gingerj in reply to Gallowglass]

Thanks Gallowglass

[DogsWoode]

I haven't had dbs Ginger but just to say I have read of worsening symptoms pre switch on and calibration. Hold the faith. Feb 6 is near and we are all rooting for you,

[gingerj in reply to DogsWoode]

Thanks DogsWoode.

[Payparky]

The time between GPI DBS surgery and programming was the worst for me. Tremors so bad (worse) . You still can have a lot of improvement to look forward to.

[gingerj in reply to Payparky]

Thanks Payparky. I guess that if the switch on works, then ill appreciate it more.