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New here. Recent bone scan r/o RSD

Hi. New to this forum. I am only 39 yo. I have found a lot of information from members and am grateful to have found this site. My symptoms are many so will just mention recent. Have multiple DDD all spine. My left knee painful x 3 months. MRI showed 3 1/2 mm osteochondral defect femur bone and docs all say shouldn't hurt as bad as does (have to use cane now) I am having surgery on now that it gotten to this point.'surgery on thurs. bigger issue having is that over last 2 months my left leg has felt like standing in bucket of ice. From thigh down to foot and started on right side recently. Very painful with cramping, numbness and burning. Was diagnosed with systemic lupus in may 2011 so docs thinking it related to that. all vAscular studies normal along with pulses. BUT everyone could/can feel temperature difference.
My spine doc after I explained symptoms to last week decided do bone scan to rule out RSD. I am nurse and never heard of this before. Had done on thurs and tech told me of areas of lack blood supply left leg and high intensity on left leg. I have not recieved results yet and am scared. I don't know if I will still be having knee surgery Thursday ....any thoughts, questions or support anyone can give would be great!


  • Got results of scan last week but haven't been back on here since having arthroscopy on knee (guess had a lot scar tissue knee??? That is what nurse said after surgery..didn't see doc)
    Results of bone scan: markedly decreased flow of left lower extremity from initial flow through soft tissue blood pool images, soft tissue images and on delayed images. No focal abnormality seen other than this overall decreased flow and decreased uptake. This is nonspecific appearance. It could be seen in patients with lack of vascular supply but in this patient with pain symptoms, it might well represent complex regional pain syndrome with vascular spasm.

    Okay, so I have just had arthroscopy on knee of this leg, have had extensive vascular studies that are normal and symptoms are still there. I don't see doctor for result of this test until next Wednesday (8 more days)

    Wondering if anyone has had this before??? Or any ideas to keep me sane until my appointment!!!
  • I have had RSD or as they now call it complex regional pain syndrome. The bone scan is the definite way to diagnose it. By the results I can't really tell if you do although they are suggesting it. I can tell you the most important thing with this condition is to get the leg and joints moving. While it might be painful to move, it has to be done. I actually got it following a foot surgery and it graduated to the knee, before they figured out what happened. Once the diagnoses was made, I was put in water therapy 5 days a week and had to re-learn the sense of touch. In my case anything touching me, be it the shower water a sock or anything, lead to excruciating pain. Part of the therapy, I put my foot in cold water then warm water building on the time. Trust me it hurt, but not walking was not a option, either. Along with the therapy, we did a series of sympathetic nerve blocks. There are also medications that can be used. For myself to get past the really bad part of it, it was the combination approach of all three that helped. While I still have it and somedays will be more sensitive than others I still to this day do the exercises. The movement is the best thing to help it.

    Hope this helps and if I can be of any assistance don't hesitate to pm me.
  • I was recently diagnosed with RSD or CRPS. How does a bone scan diagnosis the conditions. Everything I have had done was in a sense was to rule out other "things" I had and EMG to rule out TOS, blood work to rules out Lupus and other autoimmune disorders. I had a Stellate Ganglion Block which they felt confirmed diagnosis as within 30 minutes my hand turned back to "normal" temp and color. My issues started after a car accident. I did have ACDF on 12/2010. Haven't read to much on this site about RSD.
  • Thanks for above posts. Been several weeks since been on site. Was diagnosed with RSD several weeks ago. In my case bone scan showed vascular spasm causing decreased temp changes in left calf and foot. Since then it is spreading more to right leg which is bummer! I had lumbar sympathetic block done on left side and since temperature changes were noticed before and after and it has helped until recently, along with bone scan, burning behind knee, and areas of calf and foot and other symptoms, my spine doctor told me that unfortunately my diagnosis IS CRPS. I am goin to start doing water therapy next week. Have been using cane because left knee just "hurts", and standing up for more than minute without having something to hold me up (ie: cane) is real hard. Everyone thinks I still use cane because of arthroscopy done on 2/16 and ask "when u gonna get rid of that cane?" how do u explain to people that it's more than that? It's irritating, especially since what I have people may never have heard of. Even with my lupus not many understand what disease is. I know I shouldn't care.... Anyone else who has this please tell me how u have dealt with it, meds/ treatment. We plan on doin another lumbar block both sides within next two months but I have heard they eventually can stop working, pt helps, yoga, massage (I get twice week)
    I have been taking lyrica and prednisone (along with 12 other Med's!) which really helps with pain, but I have gained 25# and side effects suck! Just want to hear others stories....
  • Sorry to hear about your continued pain and problems. I TOTALLY understand. It is difficult when others don't get it or it is too difficult to get them to understand the pain when they can't visualize a problem. Why not try and explain the burning and even show them your knee and/or other leg parts that are on fire. They may be able to see and or feel the heat and begin to understand. Why do you feel all of these symptoms are Lupus.(numbness tingling, burning hands and feet, temps up to 102 degrees daily) I think they can be RSD/CRPS and or nerve issues. is the temp your internal temp or the temp of you hands and feet? Can you explain to me how the bone scan helped diagnosis the RSD, Thanks. I have had neck pain for as long as I can remember. Documented in 2005 with C5-6 C6-7 herniated and bone on bone at one of the levels. OSs said at that time I will need surgery but okay to try conservative methods. Tried everything and finally ad ACDF on 12/1210. Long recovery but did well and back to normal by the summer. Then I was rear ended. Major whiplash, lower back 2 bulges and a tear with fluid leakage. Nothing seemed to show up with the neck but I still feel there is something else going on there but nothing is showing up with MRI or xrays. My shoulders ache and I have pain below my armpit in my chest area. After about a month the burning, swelling searing heat and freezing cold and red and blue fingers and hands started then a month later the feet started. I think those are the right time frames. Issues and dates seem to get blended. can't wear my wedding and engagement rings too ofter. At times I can't blow dry my hair or wear shoes. My husband seems to understand as he sees my hands and feet. He has an infrared hand held device that can take the temp of my hands and feet. Sometimes there is a 20* difference between the right and left hand or foot. Sometimes they are the same. They can be in the 50's or the low 90's. It is hard to walk at times. I have had 3 Stellate Ganglion Nerve Blocks. They help for a bit but then fade. I was told that they are cumulative so I am still hopeful. Can't wait to start on my right foot since I have only been working on my left hand. Sorry for all of your pain. Any age is too young to deal with all of the pain and problems. Hopefully your kids are old enough to help out and your spouse is helpful emotionally and with the daily chores. Have a healthy and happy holiday.
  • I am always sorry to hear of anyone suffering from RSS/ CRPS. I have had the misfortune of also having this crippling condition in my right foot and ankle. For a long time, it has been inexplicably better. As anyone with this disorder knows, one is grateful just to be able to function, and though i have continued to have pain at all times, it has been tolerable. I actually thought I might be one of the lucky few who was going into remission... until Sunday at 5 am when I was awakened out of my sleep in agony, feeling like I had stepped deep into a bed of lava. Perhaps the worst thing is that pain at such severe levels makes me useless. I am so distracted by the pain, I cannot work or sleep or even enjoy my favorite music. An acute flare-up, and my foot looks like it did three years ago - reddish purple, splotchy, and swollen.

    Still, I will not lose hope. I refuse to go back to where I was, consumed by agony and bitterness.  I gave up on treatment a long time ago as nerve blocks never did much for me, I tried the SCS, acupuncture, pain doctors, better diet, and any number of medications. I just wanted to shout out to my fellow sufferers of RSD. It is awful, and it grieves me that anyone would suffer like i have. But, what made it get so much better? I believe that largely it was attitude. I stopped letting pain spoil my life, and through tireless work in PT, psychotherapy and meditation, I claimed back my identity - It was difficult, and as I said, the pain never went away. This latest flare-up shows how insidious a foe RSD is, but remember to live life to your fullest on your good days, my friend. The next few weeks will tell us whether this is a flare or if my disorder is getting worse again. Regardless, I was lucky enough to have two and a half years of relative health - I have to walk with a cane, but that's better than the wheelchair I used to be in..

    Question, though - I heard ketamine infusions can help with RSD flare-up's. How frequently/easily do hospitals give such medicines? Does it work, and what are the risks? I've been working hard to taper down on my opioids and am leery to be exposed to another narcotic... Also, my family doctor gave me Prednisone, as my foot is very inflamed. I've never heard of that as a treatment for RSD... Anyone hear or know if steroids work?

    Flared up
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