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Early DBS Study

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Cool info!  Though I'm still not sure I'd be up for participating in that study (almost at 3 years diagnosed so I'd qualify in that regard).  I'd not be able to conceal PD from my employer anymore if I do, plus I'm not sure I'd want to be subject to those risks yet.

 

Though, if I was able to go med free it would be nice to not worry about timing of protein consumption...

Edited by stump
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I just do not get how you could do a blind study and not turn it on.  It is so obvious when it is on or not to both the patient and the programmer. 

From article "All participants will be implanted with DBS electrodes, but only half of them will be turned on at first, and neither patients nor the doctors who study them will know which devices are active. After two years of double-blind study, all the electrodes will be turned on, then monitoring will continue."

I had mine turned on 2 weeks after surgery.  The doctors and patients will know if it is turned on or not.  It is immediately obvious.  

 

 

 

 

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12 hours ago, Kaydee said:

I just do not get how you could do a blind study and not turn it on.  It is so obvious when it is on or not to both the patient and the programmer. 

From article "All participants will be implanted with DBS electrodes, but only half of them will be turned on at first, and neither patients nor the doctors who study them will know which devices are active. After two years of double-blind study, all the electrodes will be turned on, then monitoring will continue."

I had mine turned on 2 weeks after surgery.  The doctors and patients will know if it is turned on or not.  It is immediately obvious.  

 

 

 

 

Kaydee,

My wife had a honeymoon period of 30 days before the DBS was turned on. She needed no meds and was doing the best she had in years. Until it is turned on you may just think it is working if you have a honeymoon period like that. Also, people are gullible and will believe almost anything a doctor tells them, let alone whatever else they hear or see.

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Wow--for an article in a regular newspaper, this is really detailed and well-done. Thanks for sharing.

If the research is successful, it raises a real dilemma for those of us that are still in the early stages, esp. with slow-ish progression.

Do we accept the risks of DBS surgery (including, if I remember correctly, a not-small risk of stroke), and the inconveniences of having an implant, when the benefit isn't so much relief of current symptoms, but the promise of reduced symptoms a decade or two in the future?

I can't think of many other treatments for other diseases that requires this kind of calculation--maybe pre-cancer preventative mastectomy for folks with a known BRCA mutation and family history of breast cancer?

Humans are usually pretty bad at these kind of choices. Intellectually, I'd like the option for early DBS (if the research holds up).

But it's so much easier to think, 'I'll just wait a while and see how much worse I get...'

 

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ShopGuy - there's also the consideration of advancing technology in DBS.  My last appointment my MDS said that even if I were getting close to her recommending DBS she would want me to wait as she saw a LOT of advances coming in the next few years.  While some of that is in the controller, which can be replaced with the battery after several years, some is also going to be in the electrodes themselves.  Hard to get an upgrade there.

 

Basically her advice was that unless it was now or never to wait.

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Stump--yeah, that's the general problem with tech and early adoption, right? Except instead of holding out for a cooler/cheaper phone, tablet, laptop, whatever, we're talking about brain implants.

The dilemma, of course, is if there's solid evidence waiting for better tech means continuing to decline before progression is slowed or stopped. Not that big a deal if there's a way to permanently reverse PD symptoms, but I think that's a lot further out than DBS improvements.

I'm imagining the conversation when I was dx'd (with not much more than a mild and intermittent leg tremor), if my MDS had been able to say, 'You know, we could do invasive brain surgery and you'd never get any worse. Take some time to think about it--but maybe not too much time.'

I had a friend who used to skydive. When people asked why he wanted to jump out of a perfectly good airplane, he said, 'You haven't seen our airplane.'

Why would someone mess with a perfectly good brain?

'Umm, you haven't seen my DatScan...'

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