Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 08-12-2010, 09:34 AM #7
Dubious Dubious is offline
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Dubious Dubious is offline
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Join Date: Jan 2009
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Posts: 855
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Quote:
Originally Posted by tatertim View Post
So you're saying if it's positive then it's status quo with the treatment I'm already receiving, and if it's negative then I could be screwed? I gotta say, that doesn't make getting the scan any more appealing. I read that the bone scan is actually only accurate 55% of the time, which is kinda disturbing. I'd love to not have RSD. But then I'd be faced with not knowing what is going on with me.

Truly sucky feeling right now.

Tim
Status quo? I have no idea about the complexities of your case management. But in general, if you are already receiving "standard of care" treatment for RSD and you have a + scan, likely nothing will change. You are already getting the care they have to offer. If they are holding back on a "better but more expensive" treatment modality and your scan is + then you have validation of an abnormal scan and possibly more and better care. And when it comes to a bone scan, they work this way: A short 1/2 life radioisotope is injected in you and then they take pictures of you a few times, over time, to watch for asymmetrical patterns. So what it really measures is abnormal tissue uptake and vascular flow. Some types of cancers are seen with 99% sensitivity, RSD ~60% because of sympathetic alterations and other types of pathology not at all. With varying degrees of success, it will tell you whether or not you "have" a problem" (sensitivity) but will not tell you "what" (very, very low specificity) the problem is.

Now with that in mind, it really just depends on whether or not your doc really believes that you are genuine with your complaints and also who is paying his bill (private ins., work comp, etc.) Yes, a negative scan (40% of them when looking for RSD) could be used against you, arguing there is nothing wrong with you if the doc is trying to use then end to justify the mean and cut you off. By the way, the wording on the report in short, will just say there is abnormal or aymmetrical uptake in the "whatever" region on the "x" view. Won't likely say "consistent with RSD." It will just say "clinical correlation advised" or "MRI/CT follow-up recommend" which of course, will be negative (at least as far as RSD is concerned).

On balance and in a perfect world, I still think the scan is a good idea to get but you must be prepared if you come up negative and your doc wants to beat you over your head with it! Have a game plan! Just remember that a negative scan does not mean nothing is wrong, about 1/2 of the time it means it was an invalid test result.
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