Neck & midline "tremors" developed after DBS for Parkinson's disease.

[AlabamaDoc]

I had bilateral DBS for Parkinson's disease last year. For the first 3 months, I had absolutely no dystonia or dyskinesia. Then I started to develop a tremor in the back of neck and jaw associated with some dystonia of the back of my neck, middle back, and even abdominal muscles. Before DBS, I would often get severe spasm/dystonia in the back of my neck causing my head to tilt back extremely. This "tremor" doesn't feel like the typical resting tremor of PD because it doesn't go away with simple head & neck movements. It is typically is worse during times of fatique, stress, and after a vigorous workout. It is sometimes helped by extending my head back or turning my head to the right or left for a few minutes. Sinemet also helps. But it can occur at anytime almost randomly, such as when driving. Has anyone else experienced something like this and do you have any suggestions of other treatment or prevention options.

[etterus]

Is is possible that it is a overly aggressive stimulation setting?

[AlabamaDoc]

That could be the cause. I have the ability to turn the amplitude setting down, but how do I know if I turn it down too low?

[Karen3]

Are you otherwise pleased with the bilateral DBS?

[AlabamaDoc in reply to Karen3]

Yes, I am remarkably better after DBS.

[Karen3]

I am being evaluated by the dept at Mt Sinai hospital. I have no tremor and no balance problems so have wondered if it would help me. we have not discussed the bilateral aspect, but I was sent there because they will do either side. Thanks for answering.

Karen