I'm having doubts about having a bone scan done in a few weeks, and wanted to get some other opinions about whether it's worthwhile or not. Outside of the obvious pros (getting it out of the way, gaining insight into what's going on inside me) and the cons (having radioactive matter injected into my body, the inconvenience of it taking six hours with two hour gaps in which I have nothing to do and no where to relax), I would really appreciate your input.

I've read several articles and posts questioning the true value of this test in diagnosing RSD, and honestly I don't want to do it.

You responses are appreciated.


Tim

I highly suggest that you have this test. I was unsure before mine, but it ended up being the best thing I did in terms of receiving undeniable proof. Before the bone scan, I had a few doctors who knew about my RSD by talking with me and looking at the surface symptoms but there were still many more that needed a solid medical document. For me this test was valuable because of the letter I received, stating that the bone damage clearly caused by RSD appeared very advanced, and that amount would only be possible after years of the disease. In my words it basically proved to me that I really was speaking the truth all those years. Even when they tried to tell me it was nothing. I had been misdiagnosed and shoved aside for 5 years, and this was the test that proved everything. The results placed me on disability and continue to be helpful when it comes to seeing specialists. I have also recently been moved ahead of a long waiting list. So basically I think that since you have been referred, it can't hurt to go through with the scan. No matter how long you have had the RSD, they should be able to pick up something that will convince someone else. You never know what the results may be and the radioactive dye is the very smallest amount possible. You won't even know it's there.

I totally agree! The bone scan was my only proof of what is going on!

Hi Tim,

I would get it. Especially if it is paid for by someone else. I forget the exact statistics, but they are about 60-70% sensitive which means that 30% of the time, or so, they are negative when the patient truly has RSD.

So, a positive finding is of value, a negative might be wrong. There ya go! Does life get any better than that? With regards to the ionizing radiation exposure, it is a short 1/2 life, low dose radioisotope so it it is of little consequence (although nothing in medicine seemingly is without occasional issues). Now, if they have been treating you for RSD and your findings are positive, it won't change treatment one bit. If they are holding back on RSD treatment and you have positive findings, then you potentially have much to gain. Otherwise, you're screwed! They'll use negative results to cut you off.

End result.....as Charlton Heston once said, "no one gets off this earth alive."

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.

HAVE THE BONE SCAN. I ended up at walk in care (pseudo ER) and the lady who saw me ( I refuse to call her an MD) waited two hours to see me, ironically when they were closing and came in with her purse on her shoulder and arms crossed and stated I did not have RSD and was simply seeking drugs. I am a retired Senior Master Sergeant from the USAF and respected member of the community who'd been living with the disease for two years already through diagnosis and treatment of several doctors. She claimed the MRI (of which I NEVER had one on my foot) did not show any indications of RSD. As all of you likely know, an MRI is worthless in diagnosing RSD. Your only option for a diagnosis is the bone scan and even then it's the absence of bone or bone loss that the use to confirm the diagnosis. So it is 50/50. But let me ask you this...... what do you have to lose besides a day of your life vs what you can gain, potentially confirmation that you can use in the event that you run into the same b**** I did. Or one like her. Tim, this disease is mind and body consuming. Do everything you can to set yourself up for the future. Get the scan, get all scripts through the same doctor and let everyone know that's what you want. It builds trust between you and you PCP and that's important when dealing with disease. Start doing your homework. I just went through a ketamine coma, yes COMA, trials are available in the states, I know I have been there. I am enjoying a 90-95% remission. I joined this board for one reason. I honestly believe God told me to spread the word on this and I'm trying to do so. When I came out I thought I was dead before I heard my wifes voice, God Bless her. You're in our prayers and be proactive not reactive. You cannot afford to be reactive with this one.

God Bless, Peace and remember our brothers and sisters overseas in harms way. Keep the safe and let them return to their families safely.

General
USAF E8 Retired

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