My sister was denied DBS after having been told she was an ideal candidate. The neuropsych evaluator decided she didn't meet the criteria. Initially she was told she would have to wait 6 months to be reevaluated, then it was a year. This was supposedly because she might remember too much about the test contents and would be able to "prep" for it.
Has anyone else been denied and then accepted by the same...or another....doctor?
Some people that I have talked to didn't have the puzzle sorting spatial testing, or the number and word sequencing I had to go through, but I attributed it to the procedure becoming more mainstream and Drs. being more relaxed with the positive results they are achieving with DBS. You could be pleasantly surprised trying to have your neuro hat gave you a positive candidate report for proceeding into the pre-testing send a report to a more mainstream medical facility that does DBS. At the time I had mine done at Mayo in Rochester MN. they were also starting testing for treatment using DBS for over eating, Smoking and other ways of altering thought patterns. It sounded too "big brother(ish) and down right creeped me out. Ii think because I was 12 years successfully sober at that time.Well, I am now 22 years and counting without that help. The DBS has extended my usefulness and confidence but not without it's own bag of nuances. Over-all I am pleased and would do it again! Keep trying!!!
There are several different reasons for not meeting successful criteria. The first is dementia which is the most common. Next is poor response to dopamine and the third is the nocebo effect, the inverse of the placebo effect..... specifically, why did they say she failed?
The latter two were fine. She had trouble with the number sequencing, spatial organization, etc.
I realize that no one wants to perform surgery on a candidate with poor prospects. I am not a cockeyed optimist. In fact, in many cases people feel I am too balanced and definitely a realist.
My sister was an exhausted wreck going into the tests. She hadn't slept the night before. She was tense. Her medication works but leaves her nauseated. She and her husband had committed 70 minutes to get to the test sure. The neuropsychologist had told her she would need to talk with someone who had known her for a long time so I was at my phone waiting for the call. After an initial greeting she said that no call would be necessary. She never mentioned how long the tests would take; never suggested times for a bathroom break; never tried to put my sister at ease. (It was clear that the meds were wearing off as tremors made it more difficult to write.)
When my sister told her PD doctor that she was sure d she had dinner miserable because she stopped the test saying she was too tired to continue, her doctor assured her that she thought she'd done fine...and that many patients underestimated their performance. When she went for a visit with her daughter, the dixit said she knew my sister was verbal and maybe it was better that she not have DBS because some patients suffer verbal losses (not voice; ability to express themselves verbally).
She writes poetry, still corresponds with clients (albeit painfully slowly because if dancing fingers) and provides designs and quotes for very complex custom home furnishings Fabrications (pillows, window treatments, etc.). She iIS slower at doing these things....but she is definitely not intellectually diminished.
She has read every article published about Parkinson's and she understands the physiology ( at least as well as any lay person).
When she requested re-estimating her doctor said she would have to go to the same neuropsychologist. This seems odd to me because she would naturally like to be assessed by an unbiased tester. Since OD patients do not improve, a doctor aware of or particpating in a prior test would be unlikely to find more positive results.
She is part of Kaiser in CA so she doesn't have many options. But her condition is worsening and DBS is, at this point, the only thing that offers any promise. I want to find a way for her to seek a fresh evaluation. I don't know what your background is. I feel the PD world is very small so it is difficult to explore options without alienating existing care providers.
Thanks for any ideas.
I had DBS in 2015. I feel I am still ''recovering'' 1 in 4 (25%) have negative verbal and/or coordination/balance/walking problems. I was an ''excellent'' candidate. I rolled the dice and was not the house winner...Maybe look at being denied as a mixed blessing... The devil you know versus the devil you do not know. She knows where she is today...
I try to give a realistic view. Hope it helps!
I'm a retired PT and can relate to your concerns very well. From what I've been told about Kaiser, I would approach them again with your concerns. There should be other neuropsych's available.
Is she tremor dominate or PIGD (postural instability gait disorder)? Have the Docs discussed the electrode placement options? There's two STN (subthalamic nucleus), or GPI (Globus Pallidus Internus).
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