When I went for my last neurology visit right before Christmas, it was suggested that I consider DBS...
I was taken aback, because I can still get good results with c/l (although since my PD honeymoon ended it has gotten a lot harder), and I thought I would have a lot more time until I needed to consider this "treatment of last resort"...
Their response was it doesn't hurt to talk with the DBS people now, and it's not like they are going to immediately put me under the knife...
I asked if I could still run after the procedure, and they said certainly, and that I could even swim...
Now to my question...
I understand they will not consider you for DBS if you have some cognitive impairments, and I will go in June for cognitive testing (which I understand is a 4-5 hour strenuous affair)... This was setup because I have had some serious cognitive lapses recently (e.g., my short term memory is shot), and I am quite very worried about it, but my practitioner suggested my cognitive issues are most likely cause by poor sleep... But she also mentioned that cognitive testing is a pre-requiste for DBS...
Now to my questions:
Is there anyone who is reading this that has been denied the DBS surgery? If so, can your share the particular reason why you were denied? If it was cognitive related, can you describe your particular impairment? Or if you just happen to be knowledgable about DBS (maybe your researched it) , can you share the reasons why people typically get denied?
My MDS recommends DBS earlier - he believes it can "set back the clock" 3-4 years. Depression was once mentioned as a contraindication to DBS, but I'm not sure if it was a history of depression or just positive scoring on neuropsych testing done at the screen for DBS. I am holding off for now.
I’m a 71 yo that developed non tremor PIGD symptoms in 1998. I had dystonia and an eccentric “judder” in my left extremities. Being a physical therapist I sought diagnostics to no avail for several years.
At the time I was living in southeast AZ. I decided to get some answers because I was losing control of my manual skills as an orthopedic manual therapist plus my hobbies were restoring vehicles and playing drums.. not happy times.
I went to the Mohamed Ali research center at Barrows Neurological in Phoenix. Within 6 months, 3 visits I was diagnosed as atypical PD. The confirming event was successful control of the dystonia and eccentric disfunction with requip. However even with half of the normal dose I was falling asleep at 2 pm... no way to drive home.
I started on azilect before it was FDA approved paying $1 a pill buying it directly from Tevia in Israel. It was subtle and with small doses of c-l dopa I did fairly well for 2-3 years. But I inevitably worsened, sold my practice and sought DBS.
Initially I was evaluated at Barrows for off on testing. They concluded that I was a risky candidate because of a high nocebo rating... the inverse of the placebo effect. Instead of having the benefit of a positive attitude influencing the results I had a negative influence probability?!? I think it was a consequence of my career and a knowledge of how bad things can be when it all goes wrong ; vegetables in long term care.
My son is a MD and made arrangements for me to see DR Kim Burchiel at OHSU in Portland . OR. The off on testing confirmed the previous psychological results that I was vulnerable to negative outcomes, a contra-indicator for DBS. However the team felt that I should have a high probability of getting significantly better with DBS. I was losing functional ability so I agreed to pursue psychotherapy for a year.
Having moved to Corvallis Or... I couldn’t handle the desert heat, I was seen by a psychiatric resident for a year. Dr James James took the time to have an hour long session weekly without attempting to push pills down my throat. He appreciated the position that I had that led me to my career instead of medicine “if you have a problem, we gotta pill!” This was part of my problem with the nocebo effect, undesirable side effects.
A year later I went through another grueling off on testing that was a confirmation of my motor degradation, not to mention the non motor decline that’s not picked up on these tests, constipation, sleep problems, etc. But the good news was that I was perceived as a good candidate from a psychological assessment.
I was scheduled for surgery and breezed through it utilizing humor... I told all the support team that I made a deal with DR Burchiel to drop a lead into my “perpetual orgasm site”.... how could it get any better!?!
I’m 5 years in and slowly losing some of my motor abilities. However the non motor degradation is definitely causing more quality of life issues. I wish there was a DBS approach for them. Oh, and the perpetual orgasms... devine 🤗!
Non motor symptoms are a combination of psychological and autonomic; anxiety apathy,depression, constipation, “Uringency “, swallowing difficulties to mention a few.
Nothing is crazier than perpetual orgasms... they actually become mundane.
You posted this same question two days ago and three days before that?? There was a long discussion...
The neurosurgeon I recently saw to discuss FUS and DBS said that you don’t qualify to have DBS if you have signs of pre dementia because DBS would make it worse.
Why not consider Duopa? It's less invasive, far less recovery time AND its reversible. Also, while it has some risk, those risks should be compared with those of DB: infection, stroke and voice problems. Since medication (C/L is still working for you, even out the delivery. "It's a 'no brainer' in my book. (sorry for the pun).
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Doing it while you can 
How do you know when to go to emergency when PD symptoms are beyond erratic? 
