Thread: duodopa pump
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Old 03-05-2014, 04:30 PM
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Conductor71 Conductor71 is offline
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Conductor71 Conductor71 is offline
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Join Date: Jul 2009
Location: Michigan
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Quote:
Originally Posted by lurkingforacure View Post
I dont' know either, but will say this:

So now we understand the concern of our former neuro...also it's major surgery and you have a tube sticking out of you that needs to be kept sanitary, etc. There are downsides.

And, of course, probably what is the real reason: the ldopa gel is horribly expensive and only the wealthy will be able to afford this treatment, it'll run over 100K/year....unless covered by insurance, which gets us to why this hasn't been approved yet in the USA for PD....no insurer wants to have to cover it.
I agree that the major downside is being tethered to a tube, but it can be removed for bathing and swimming. There are risks with any surgical treatment but given the choice I would opt for this over risky, highly invasive brain surgery that may or may not work. I have a friend with PD who happens to be an MD, and she will not have DBS because in looking at risk stats she finds the stake are too high. My neurologist has acknowledged "the risks are high, but so is the potential for a big payoff." The thing is Dudopa optimizes Gold standard med without months of tweaking, infection in your brain, risk of speech damage, no promise of less dyskinesia, or no promise that it in some ways leave a patient worse. We know that Duodopa works in over 90% of cases.

I think we should have the option, at least. I have heard nothing but positive results from participants in the Duodopa trials; many saying they have their lives back. That is enough to convince me.

Here is a link to a blog post by a patient advocate who was a professional musician until PD took over her life. She has had PD for 18 years and is now not only playing sax again but is performing on tour thanks to Duodopa. She is getting the word out for Abbvie that the pump works. Normally, I would scoff at that sort of exploitation, but if it gets the word out that can only work in our favor by increasing demand and potentially lowering costs. I can only hope...

http://www.temple-music.com/on-the-road-again/
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