Originally Posted by 2snowbells

DBS (Deep Brain Stimulation) may not be for everyone?

I was PD diagnosed 4 years ago; however I began noticing a change in my handwriting 11 years ago. Initially, I have tried more than 6 PD medications but with each one, the side effects were worse than the resting tremors, inability to hold a spoon or the extreme tiredness I was encountering. So, some 16 months ago after evaluations by a leading neurologist and subsequent neurosurgeon, the neurosurgeon performed the DBS procedure on me. Prior to that, it should be noted that the resting tremor was very prominent in my right hand and slight in my left, but was in control of my balance, walking, and had strength that I no longer have. One week after the implant of two wires, I had the stimulator placed. Three days after this first step, the implant, my right eyelid drooped, but then corrected itself.

Two weeks after the insertion of the neurostimulator in my chest, constant dizziness set in and is still with me to this day. Additionally, both upper eyelids look equally droopy, and other signs of Parkinson’s manifested itself, including my formerly normal walk now is that of one who has been dealing with PD for years. In short, I wonder whether the surgery had accelerated my PD within this short a time span. I had conversations with my neurologist who suggested that I am one of two DBS patients who have noted the same complaint and it seems that DBS may not be the answer for everyone. I am beginning to have swallowing difficulties as well. Frankly, in hindsight, I wish that I had not had the implant, but the numerical testing criteria scale showed that I was a candidate for the procedure. The procedure is supposed to be reversible, but I wonder whether or not it may be too late to undo the progression caused by the DBS--if that were the case. Has anyone here on this forum had DBS and can relate to the described problems?

Jerry

Originally Posted by made it up

Hi Jerry,
Try turning your stimulators off with the programming device they gave you.
When you're switched off it should be just like before DBS.
Laura gave good advice regarding joining the yahoo DBS group.