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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Who has had bone scans? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/206586-bone-scans.html)

Phaedra 07-08-2014 07:41 AM

Who has had bone scans?
 
I had a bone scan done. I posted the update in I could have just screamed. My question here is what were you told after you got the results back. I have read that there is not one test that proves RSD just several that rule other things out. I need to be enlightened please, for this and the update in the other thread. How does this help determine or not determine RSD. I have also read that bone scans can still come back normal and the person can have RSD. Any thoughts would help Please.

Nanc 07-08-2014 12:58 PM

Hi Phaedra!
I had a three-phase bone scan on my right hand and it was "normal". The dr told me that result and because of that I did not have RSD. He could not offer anything else, but it is not RSD. This jerk of a dr put in my records that I cried because I didn't have RSD and was looking for someone to operate on my hand. What a huge crock of BS. I specifically told him that I was there for an opinion (he was the 3rd) because the previous two drs wanted to operate and I did NOT want that, especially when they didn't know what was wrong! When he gave me the results, yes I cried because he couldn't tell me what was wrong with my hand. Needless to say, it was/is RSD and it mirrored over to my left hand.

There are times that people have had abnormal results with bone scans and it confirms RSD. They look at how the blood is flowing and pooling in that area. This is from the RSDSA website: http://www.rsds.org/5/news/2005/bonescans.htm

Good luck!!
Nanc
:hug:

AZ-Di 07-08-2014 02:44 PM

I know it's all so frustrating! My hand & wrist conracted right away + many
other symptoms, so I'm lucky I got diagnosis fairly early. They did order a bone scan anyway (why?). Mine just showed osteopenia in my affected hand.
In between good Dr.s I seen my share of just plain FLAMING jerks as well. It's very upsetting!

Lottie 07-08-2014 07:37 PM

My understanding is that CRPS is associated in osteopenia and osteoporosis.. But, I am not aware of a bone scan being used for diagnosis of CRPS. That sounds wrong to me,but other more knowledgable folks can explain the diagnostic criteria for CRPS better than I can.

cdwall 07-08-2014 08:45 PM

Three phase nuclear bone scans used to considered diagnostic criteria to confirm CRPS/RSD. Some still consider them diagnostic. It often depends on the stage of the disease as to whether they will be consistent with a diagnosis of RSD. As in, sometimes later in the disease they become normal again. So they are more useful early on like six months or less. However, I had one 10 months from onset of symptoms that was consistent with CRPS type 1 in my right leg and considered diagnostic.

allentgamer 07-08-2014 10:44 PM

I had two done over the years. They did the waist down, and both showed osteopenia. The second one was a worse case of osteopenia with the foot and ankle looking almost transparent on the RSD side.

picobill 07-09-2014 01:24 AM

Had 2 done learned how tricky CRPS can be
 
Hi, Yeah you read right 2 separate bone scans, one delayed after my preliminary diagnosis by hospital not having the isotope.. say 8 months after I got CRPS. The second was ordered by my very wise and sharp pain Dr at that time just after my first spread from my left hand to left foot..

Results? First scan was "inconclusive" which is medical speak for We're not sure but it ain't normal. *L* Second Scan? My respected Dr's words "It lit up like the fourth of July".

Why? Well again I defer to my Pain Dr. he told me reason he'd sent me for the 2nd scan was he'd read an article on how the active effects on the bone in CRPS early stages can be transitory translation CRPS gets in messes with the bone then stops.. well stops for then.. not sure what it's doing in there now but I wish it would stop 'cause it hurts like hell.

Conclusion aside from the lousy batting average on Bone scans diagnosing CRPS, you could have every symptom of it and still come up negative on a scan... so believe what you KNOW in other words believe your pain.. and don't let some idiot who's never burned tell you it's all in your head..

fbodgrl 07-09-2014 07:03 AM

I didn't have one. A neurologist recommended one, but my PM doctor felt it was not necessary to expose me to the radiation when I had many other RSD symptoms and they are not conclusive in diagnosing RSD anyway.

eevo61 07-10-2014 12:30 AM

Never had one ,but when my ortho suspected I had rsd ,he sent me to a neurologists that happens to be a neurosurgeon as well and immediately pointed rsd was in fact in my right foot, I switched drs after a year, and was also neurologist and neurosurgeon and agree as well was rsd in my foot and calf ,now his colleague pointed rsd in my whole left leg,lower back,buttock and right foot ,ankle and knee , but might be also spreading to my arms due to the burning and pains I gets with little stress or anger triggers flares ,my scs helps and also using my tens units,in my hand and arms, a second scs was recommended already for,my left leg,maybe they will add the cable only but one of the dr recommended as well if she do the surgery, add the four cables just in case in the future rsd spread to upper limbs but I'm sure is there, I'm not scare but upset of how a simple twisted ankle changed my life forever.
Phaedra, I. Sure there is no test or dr who really can't treat rsd efficiently, it will be always hard and always trying something new, but when wc is involve,things are different , keep trying to,get medical treatment and keep doing researches,,no long ago I mentioned some researches sites, please visit that site, you will get more information,maybe you need to gather more to really understand how rsd iWork's we all manage pain different ways but at the end ,pain is pain and rsd will never change how we feel about it, we get upset,sad. Angry ,disappointed and lost with no way out, keep trying and never give up, is so confusing yes but it,will past as long as you truly understand how rsd works and education is the only key we have, teach you own dr with some research so they can believe and understand as well, many dr still are in denial, we as patients have the power to educate them as well,don't feel shy,print out rsd researches and carry them with you in very dr, visit ,is hard but please ,don't give up, get treatment you need ,blessings to you and hope soon things change to the best ,with loving care Jeiska .:grouphug:

Burnbabyburn 07-10-2014 07:57 AM

HUGS
Just wanted to say hi and send support. I don't recall. I had some scan shortly after the surgery that caused the RSD in my arm and it showed serious wasting away (not a medical term, lol) and changes. Atrophy and lit up....?? I don't recall. Sorry

Hope you got some helpful answers

Soft hugs
Quote:

Originally Posted by Phaedra (Post 1080798)
I had a bone scan done. I posted the update in I could have just screamed. My question here is what were you told after you got the results back. I have read that there is not one test that proves RSD just several that rule other things out. I need to be enlightened please, for this and the update in the other thread. How does this help determine or not determine RSD. I have also read that bone scans can still come back normal and the person can have RSD. Any thoughts would help Please.



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