Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 04-18-2009, 11:37 AM #21
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I had orthopedic doctors ever since I got injured in the car crash. They know zilch about RSD! I had to find out the hard way!

They did see that the cartilage behind both knee caps was damaged (had gone soft), but they didn't pick up on the RSD, so it went undiagnosed for years. As I went from one orthopedist to another, the second one again ignored the discolorations and at about 1,5 years into the RSD my right leg was put into a full cast for weeks, then afterwards almost immediately (without the muscle gaining enough strength), that right knee was operated on. The cartilage diagnosis was confirmed again for both knees. I had nerve damage after the operation (but it took us some time to find that out). The knee joint itself felt better afterwards (cleaned, inside was filthy, and I had holes in the cartilage) but when I woke from surgery and they put me on my feet, my right leg went black, while the other leg had the typical RSD discolorations. They ordered me to bed rest immediately. The nurses were really worried. One nurse actually asked me if I still went to school. No. Why? Because this might take a long long long time. I asked him what he was on about, but he didn't want to tell me. I heard shouting in the hall from the head nurse to my orthopedist, saying that the doctor should have read his file! In the admission form I had written, after being ignored so many times, that my feet had turned blue by now. The orthopedist refused to show until the next day, even though I had asked several times he visit because of the odd reactions in both legs. I got 8 months of PT after that, which I couldn't handle well, and my muscles atrophied despite the PT. Another orthopedist got me off the PT straight away and prescribed one home exercise that I was supposed to do every day, throughout the day because I was too weak to handle full PT. He described every symptom I had and documented it, but he didn't give me any diagnosis and again it went undiagnosed for some time. A neurologist, who happened to pick up on the discolorations about 3 years into the RSD, thought it might be RSD. It was later confirmed. Then confirmed again by a rheumatologist and 2 pain specialists. By then it was far too late.
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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