A dear friend had DBS for Parkinson's and then a stroke after the surgery. Her left side is paralysed from the stroke and she is currently having therapy. However her severe dyskinesia on her right side inhibits her physical therapy. Dr. does not want to activate her DBS until she is finished with therapy. Has anyone ever experienced this? It is a "catch 22" and extremely frustrating.
Stroke following DBS surgery.: A dear... - Cure Parkinson's
Stroke following DBS surgery.
Awful. Someone needs to have a talk with that MD!
That is a terrible story and I'm sorry for your friend situation. However, I could concede the doctors perspective that the DBS might confound treatment outcomes . If the dyskinesias are intractable, I would suggest perhaps breaking up doses A bit and taking them sequentially (every 20-30 minutes). The only concern is that your friend might not turn "on" if they don't receive the full dose. Or, perhaps the doctor might consider a short trial with amantadine, which would ostensibly control the dyskinesias a bit in the near term until then DBS can be turned on and programmed
I am so very sorry to hear about the DBS and stroke. There are a number of problems with DBS, and many success stories . Reference:Neurosurgery: Complications of DBS surgery — insights from large databases
Published online 27 October 2016.
Analysis of data from a large number of deep brain stimulation (DBS) recipients in North America has revealed a higher rate of revisions and removals of DBS leads than was previously reported. Hardware malfunction, lead infection and malpositioning were the most frequent reasons for revision or removal.
nature.com/nrneurol/journal...
I am unable to have this surgery do to a stroke. My prayers are with her.