Early + bone scan, now - bone scan and have osteoporosis in late RSD. Please help!

[Heather Rae]

Hi folks!
I hope some of you maybe have experienced something similar! When I was first diagnosed with RSD, they caught it with the bonescan in the *hot* stages where my knee/leg was super swollen red, hot and it definitely came up that way. It was abnormal. I have since then advanced to cold, purple (sometimes red) and discoloration and swelling comes and goes...skin stays pretty shiny though and hair loss versus hair increase etc. However, the pain is far from gone! stabbing, burning, RAW pain! The opposite limb is showing signs color, temp, knee pain etc. so the doctor decided to do another scan. It came back normal??? I did some research and found that at times, you can miss your window and the changes you will see in early stages on bone scans won't show up in late stages. The bones in the left knee started to lose density and now it has progressed to both hips, lumbar spine and hand. I had a bone density done a few months ago and am very borderline osteoporosis ranges. Would that not show up on a bonescan? My results were normal perfusion, equal uptake in both limbs and conclusion= normal. What do you think please?

[painman2009]

crps..or RSD as I will always call it. there is no real test and the bone scan shows .. some things not all.. did you get a three phase bone scan.. this is important.. a regular bone scan is an injection then an hour break and scan.. a three phase bone scan is the injection. immediate scan, then one hour then 3 hours.. (three scans) the triphase bone scan is what they "say" shows the RSD best.. but not always... so if you show once but not twice it is still RSD and bone density test is test to see if you have osteo.. it might show up on bone scan but I wouldn't count on it... this is all my personal experience. and conversations with dr,s. .. good luck to you I hope this helped

[Heather Rae]

Originally Posted by painman2009

crps..or RSD as I will always call it. there is no real test and the bone scan shows .. some things not all.. did you get a three phase bone scan.. this is important.. a regular bone scan is an injection then an hour break and scan.. a three phase bone scan is the injection. immediate scan, then one hour then 3 hours.. (three scans) the triphase bone scan is what they "say" shows the RSD best.. but not always... so if you show once but not twice it is still RSD and bone density test is test to see if you have osteo.. it might show up on bone scan but I wouldn't count on it... this is all my personal experience. and conversations with dr,s. .. good luck to you I hope this helped

Hi Painman!

Thanks so much! Yes both times they were the 3 phase bone scans but the first machine used a few yrs ago was a little newer, more high tech I think. The hot areas 2 yrs ago showed up as a solid red mass all around the RSD (knee, above and below) and with the recent machine, I could only see white dots on the monitor. Either way, had to wait the 3 hrs. From what I've read, the bone loss in my knee should've showed up as cold spots. The ortho surgeon was even shocked with the amt of loss I've sustained in the past yr..it's as if someone who's bed bound or something although I'm not. I walk with a limp and have to wear a brace and it hurts cont with the PT too. Bone loss should be getting better versus worse you would think as the crutches have been gone since mid-09. But with the original trauma I've sustained in the left knee compared to the right, I have no idea how they could ever be equal either because I have a partial knee replacement too. Have you ever had your films or C/D's looked at by another radiologist before? I did go ahead and request them. When compared to recent knee films, recent bone density report a few mos ago, now this test looks like I've just suddenly gotten all better!

[Heather Rae]

Originally Posted by Heather Rae

Hi Painman!

Thanks so much! Yes both times they were the 3 phase bone scans but the first machine used a few yrs ago was a little newer, more high tech I think. The hot areas 2 yrs ago showed up as a solid red mass all around the RSD (knee, above and below) and with the recent machine, I could only see white dots on the monitor. Either way, had to wait the 3 hrs. From what I've read, the bone loss in my knee should've showed up as cold spots. The ortho surgeon was even shocked with the amt of loss I've sustained in the past yr..it's as if someone who's bed bound or something although I'm not. I walk with a limp and have to wear a brace and it hurts cont with the PT too. Bone loss should be getting better versus worse you would think as the crutches have been gone since mid-09. But with the original trauma I've sustained in the left knee compared to the right, I have no idea how they could ever be equal either because I have a partial knee replacement too. Have you ever had your films or C/D's looked at by another radiologist before? I did go ahead and request them. When compared to recent knee films, recent bone density report a few mos ago, now this test looks like I've just suddenly gotten all better!

Sorry...meant to add I was injured in 07!

[painman2009]

on my scan my right leg to have disappeared . can't wait to see what next yes will show,