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

I think I have read it is about 50/50 too. It depends a lot on how long you have had RSD - if there has been enough time for the bone damage to be done. I had one, and it was negative, but I've been diagnosed over an over by many docs as having RSD, so there you go.

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.

I would probably have it done, even though mine was negative.... the doc that ordered mine also ordered an emg... which also was negative. She was so sure I did not have RSD and was faking that she was nearly jumping up and down. I asked how I could fake swelling, cold, red, shiny, ridged fingernails, hairy area on arm.... she said if the bone scan was negative I did not have it period. I nearly ran out of her office and never went back. I went to Clev Clinic and my doc there doesn't order either test, considers them a waste of time.

But, if your lucky, and it is positive- it will help you prove your case.

Mine was done 2 months into having RSD. I wonder if I had one now, years into it, if the result would be positive. I am having a lot of problem with the bones in my feet getting stress fractures even though my bone scan that they give women is normal... makes me wonder if the RSD in my feet has left my bones weak there.

I just want to thank each and every one of you for sharing your stories and encouraging me. I spoke with my pain doctor's office a little while ago to make sure it wasn't them ordering the test, to which their reply was "(My doctor) doesn't rely on that test to diagnose RSD." I'm currently waiting on the ortho's office to return my call...Due to my post thrombotic syndrome, the blood begins to pool in my leg after 30-45 minutes, and I need a place to elevate it to relieve the swelling. So I'm gonna do it, I'm just waiting to see of they can do it closer to my house or accommodate me in some way, which they seem more than happy to do.

THANK YOU GUYS SO VERY MUCH FOR HELPING EASE MY ANXIETY! YOU GUYS ARE TRULY THE BEST! I THANK GOD I FOUND YOU!

All the best
Tim

There is being realistic and then there is being just plain cynical. When exact percentages are thrown into a conversation, it's not like they automatically apply to everyone. All of us have had to deal with the really bad side of things, but to assume that it will happen again before it even happens is wrong. The only way Tim will know what they will do with the results is by taking the bone scan. And with no assumptions or negativity before hand. Anything that results can be taken care of when it comes up.

We have been trying to get a diagnosis for my daughter since April. (I know that isn't very long in comparison to how long it took for many here.) One of the first things that was done was a three phase bone scan. This was not a long test. They only did one scan of each area. It showed decreased uptake in the suspected RSD leg. The radiologist told the orthopedist that if it was RSD you would expect to see the opposite. (decreased uptake in the right, or increased uptake in the left I assume.) Does this mean that the bone scan could have indicated RSD from the beginning and they just didn't know it?

I learn so many things here.

Thanks.

Don't have it in front of me, but there is a fairly new paper out describing "hot vs. cold" RSD. This is gauged by the temperature of the extremity. They then go into the whole SMP vs. SIP thing and explain that while there seems to be these two seperate (hot/cold) types, many of the "hot" turn into "cold" RSD down the road. The cold don't change. From what I recall, this change occurred in a few months post-injury and the cold, I think, didn't respond well to sympathetic blocks. But again, I don't have the paper in ffront of me.

Since the temperature change is related to vasular flow, which is key on a bone scan, it would seem that there would also be a change noted on bone scan between the two. Thought it was interesting...

Well I had the triple phase done on my whole body, so now i'm anxious about what the results were. I did get to see what it looked like, and I noticed the two most problematic areas (my right knee/calf and right hand and wrist0 glowed much brighter than the rest of my body. I know that doesn't necessarily mean anything, but I'm still anxious to find out what it showed.

I'm also curious about another aspect of the scan...the part that shows the bloodflow. If anybody knows anything about Post Thrombotic Syndrome, can it detect that as well (veinous insufficiency)?

--Tim

Hi Tim - sorry, don't know the answer to your question. Just wanted to drop you a note to wish you luck with the results. I never had a bone scan. Sounds interesting....I hope your medical care benefits from the results.

Keep us posted.

Sandy