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bluedahlia

Jerky Movements and Dystonia after DBS

3 posts in this topic

Dr, Okun,

 

I had DBS surgery 3 years ago and for the most part it was a good decision for me.    I recently started to have dystonia in my left shoulder and my left arm is not smooth in it's movement.  Kind of Jerky.  That is my bad side.  The settings for my stimulator are 3 (bi-polar) for my left and 2.5 for my right (which I have no problems with).  What could be causing this three years into my surgery?

 

Also, if I raise the voltage on my right side, it affects my left side as well.  Very puzzling.

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Could be a number of things including disease progression, need for medications, need for programming, a migrated lead or a sub optimally placed DBS lead.  We generally recheck each DBS contact (for benefits and side effects), image, and attempt medication adjustments and in some cases programming.  These cases need to be troubleshooted if not fixed easily by medications or DBS.  It could end up being disease progression, but hard to know without seeing the person in the office.

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Thank you so much.  I have had botox on the offending shoulder and it has helped somewhat.  I had dystonia on that side before DBS as well, but not as bad.  Turning down the stimulator a bit and taking levodopa 1/2 pill 25/100 more often (every 2 hrs) has resulted in less jerkiness.  I'm also on Arimidex and wonder if that is contributing to all my joint pain.  What a life!

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