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06-11-2014, 06:11 PM | #31 | ||
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In fact only 10% of patients are considered to be good candidates for the procedure. So in fact the opposite of what you say is true (source american parkinson disease center). Every person is different hence I have no preference for or against DBS in general. I don't agree with the neuro-protective push since there is no proof. And in that I am entitled to my opinion. In fact the more people that do it the more data we have.
I didn't argue at all if you read it. I did encourage informed decisions, expressed concern, and supported asking lots of questions. Nobody read what I actually did say apparently. I pointed out that science does not know how the electric stimuli affects surrounding tissues in the brain...hence my concern about early DBS. We don't know what DBS does or how it works so I did strongly question what possible benefit it can do neuro-protectively if the condition it acts upon (irregular impulses) doesn't exist in the brain yet in early stages. I also said I wasn't charitable enough to volunteer as a guinea pig for this completely unproven hypothesis of neuro-protectiveness. I didn't tell anybody else what to do or how to speak. My reasoning was that atypical PD (non-progressive) would be inappropriate for DBS and urged caution in the specific instance. The mental deficits, suicide, behavioral issues, and increased risk of falls to exist somewhat with drugs. Drugs however are much less permanent. I think many surgeons want funding and publishing so they push surgery to achieve that. There are also well meaning docs that just want to help and don't understand the eventualities because we are still learning. I was strongly pushed by many bad docs and a few good ones to get surgery the first year and every one after I was diagnosed. This would have been entirely inappropriate. I would like to help prevent that happening to someone else. At present there is absolutely no proof that drugs, surgery, or any supplement, condition, etc offers any protection. For that reason I encourage cautious decision making. Some things are more permanent that others. Don't let the desperation, frustration, fear of the future drive decisions. I do get how scary it all is. That's my only interest. Quote:
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06-11-2014, 06:32 PM | #32 | ||
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Senior Member
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On the substantive issue.
UCSF publish their DBS results [1] "For bilateral DBS, the evaluations showed a 45-70% improvement in the scores on standard rating scales, off of medication, as a result of DBS. This is similar to the results from other major centers and represents a major improvement in mobility. In our series, the risk of stroke is 1.6%, the risk of severe stroke with death or permanent major disability is 0.5%, and the risk of device infection that requires further surgery for device removal is 4%." Note that the 45-70% improvement is relative to the off state. It would be useful to have the figure relative to the prior, medicated on state as well. I suspect that even if we agree on the accuracy of the figures, different people will react to them differently. Reference [1] http://neurosurgery.ucsf.edu/index.p...html#candidate John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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06-11-2014, 08:51 PM | #33 | ||
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What I can tell you as a grateful recipient of DBS from my own perspective is this.
I didn't want ....holes drilled in my skull, permanent brain damage, altered personality blah blah blah. I had the surgery 10 yrs ago and my quality of life was going downhill rapidly. I wanted it to improve which it did and I was willing to risk that as personally I felt there wasn't a great deal to lose. 18 months ago both batteries went flat and needed replacing and so I went just a few days with no stimulators working before surgeon could replace them and I realised then how dependant Ive become on the hardware implanted in my head! Several yrs ago I became aware that studies were recording positive outcomes from DBS done earlier rather than later was preferable. So thats it from my perspective. |
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