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Deep Brain Stimulation (DBS) for Parkinson's

Parkinson's Disease | Last Active: Oct 6, 2023 | Replies (70)

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@tedalmon

I too am on a DBS waitlist at Mayo, but I also want to do a bit more research on alternatives like focused ultrasound and especially the "Parkinson's Glove" which I heard was in clinical trials at Stanford in CA. DBS has been done successfully for decades and I am confident it could work for my tremor dominant case, but I admit to being intimidated a bit by how invasive it is and having a battery/control unit permanently implanted in my chest. I want to make a decision on the testing for DBS until the fall. Good luck.

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Replies to "I too am on a DBS waitlist at Mayo, but I also want to do a..."

A few cautions here.
My pre-surgical experiences with the Neurology department (who perform the tests and approval for surgery) was the worst experience I have had since going to Mayo Clinic for over 22 years. Yes I said the worst...tough to accept from this vaunted institution.
First, the waiting period for the presurgical tests was ten months and they never followed up with status. You hear nothing unless you call in and whoever you talk to you will get a different answer on status and time line. So your schedule will come as a surprise.
The clinical tests and meetings with the surgeon and his fellow Neurologist was customary with very little analytical feedback. The big surprise comes with the four hour Psch evaluation. A Psychologist conducts the first 30 minutes with questions from the forms you've previously completed. Careful here as she was looking for reasons to eliminate you or as the feedback indicated (minimize risk). Like our legal system, your answers will be held against you.. For example, when asked if I was depressed, I said as all Parky's answer, yes. My rejection answer said I was depressed and therefore rejected.
The interview was followed by a 3 1/2 hours of Psch tests administered by an inflexible proctor with only one ten minute break. Testing begins at 7:45 am....the worse time for Parky's. A Neoropsychometric test is then administered which focuses on memory and retention. After traveling by car for ten hours and not sleeping for two days I was not at my best at 7:45 for four straight hours. My retention is good, just slower than our youth. Slowness directly affects your results. Don't know a good strategy to deal with both retention and recall time. I did not do well here as I needed time to think. I've been told by Neurologist friends you need to be a Savant to be successful here.
Lastly, after waiting four weeks for my results and to schedule surgery, I called in and one of the admin staff went and found the Committee notes and summarized them on my portal. After four weeks I have no formal feedback, just an administrative summary. Never seen this approach before at Mayo.
I was rejected for my honesty on depression and my timely recall on the Psch test. Oh, and I forgot to add the time for honesty is not the Psch interview or you will be rejected.
Wish all who continue, the best.