DBS Induced Dystonia

[jlmerten]

I recently had DBS surgery after 13 years with Young Onset PD. I am now 47. The first couple of programming sessions were very promising but I began to develop painful, disruptive dystonia in both arms and legs which has kept me from moving. Sometimes I cannot even walk across my kitchen floor. When I reduce stimulation there is some relief but then I cannot reach the window of symptom efficacy. Even small amounts of L Dopa with the stimulation seem to trigger the dystonia. Has anyone seen this? Even my neuro team is perplexed.

[MBAnderson]

Sorry, I can't help you, but thank you for the feedback re DBS, though.

[MissRita]

What does your doctor say?

[Bolt_Upright]

I'm so sorry to hear this. But glad you shared. You are in my prayers.

[eschneid]

Sorry to hear it, trying to figure out if you're under or over stimulated and medicated. Wish I had a better answer, but you and the team have to keep experimenting with meds and your programming. Wish I had a real answer for you.

[jlmerten in reply to eschneid]

Yeah we're all experimenting. Found the dystonia was better if I took extended release L Dopa and mucuna pruriens. Less of a jolt than the fast acting L Dopa. Going to do some new programming this next week with help from a PA at Cleveland Clinic. Wish me luck.

[JCRO in reply to jlmerten]

I wish you a hearty dollop of good luck with the DBS finesse.

[jeffmayer]

If you don't mind me asking why did you have itJust I have been offered it I'm dubious

[jlmerten in reply to jeffmayer]

Why did I have DBS? I had a friend who had miraculous success with DBS and I was getting to a point where I was taking L Dopa every 90 minutes to two hours and the off/on was very unpredictable. I also had very severe dyskinesia and was told I was a good candidate for DBS. The programming has been time consuming and frustrating but the outcome is still better than pre-surgery. I'm hopeful my doctor and will sort out side effects.

[jeffmayer in reply to jlmerten]

Thanks for your rei

[jeffmayer in reply to jlmerten]

Reply

[thfc1961]

its my wife who has Parkinsons. She uses Amantadine and B1 Thiamine HCI to suppress dyskinesia but doesn't have distonia

[Crescendo]

My 73 yer old husband had DBS surgery in 2019 after having Parkinson’s for 10 years. He had dystonia in his thighs. After 2 terrible years of pain, he was able to stop taking Sinemet (levodopa). This was the cause of his dystonia. I don’t know if that will help you, but I feel I should share his experience.

[jlmerten in reply to Crescendo]

Thank you for your thoughts. That's very interesting. The DBS has helped my dyskinesia but triggered dystonia, especially at higher stim levels.

[limcheeese22 in reply to Crescendo]

may I know what dosage he took pre DBS?

[limcheeese22]

there are many parameter can adjust: frequency, pulse width... have you tried yet?

[limcheeese22]

have the same, my palm will jam, difficult to know whether if over stimulate or under stimulate.

for me higher frequency less dystonia but balance will be way off and speech also affected