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 12-04-2008, 01:10 AM #1
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lindkaye lindkaye is offline
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Location: Rainy - Seattle WA
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15 yr Member
lindkaye lindkaye is offline
Junior Member
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Join Date: Aug 2008
Location: Rainy - Seattle WA
Posts: 68
15 yr Member
Question Need advice - what would you do?

Hi there;
I am asking you guys for your advice on how to proceed with dealing with my ortho doc - I am so frustrated I am not sure what to do. quick background: I just had my open debridement for scar tissue on my right knee. I had a total knee replacement done last year - failed and never regained my flex or extension of my knee (around 80 and 15) then came down with RSD in it. After much contemplation and talking to docs - I went ahead with the surgery a couple of weeks ago with increased pain meds and such and I believe it was a success (no RSD flare) except my range is still no better at this point yet. My problem is my surgeon's attitude lately. While in the hospital I fell (yes, what luck!) but didn't get seriously hurt, except bruised severely my tailbone. Dr. came in the next morning and asked "how are you feeling today?". Well, I told him my tailbone hurt and my knee had a slight burning pain I usually feel with the RSD. His response was - "You can't dwell on the pain all the time. Maybe you should take up a hobby such as knitting, or puzzles or such". Ok, I know I cant sit on the couch 24/7 and just think about my pain - which I dont. But I was sitting in a hospital room, just had surgery, I had fallen, and he did ask how I felt! I couldnt believe what came from his mouth. I just looked at him! Yesterday I had my post op appt with him. We were discussing PT - so far I have been having in-home but was needing to switch to outpatient. I told him I knew of one close by but had called them inquiring if they had a therepist with knowledge of RSD. My ortho doc seemed upset I had done this. He stated it was not important that the PT had knowledge of RSD - it was the therepy for my knee replacement they needed to be concerned with and I shouldn't be so picky! Again - my mouth dropped open and I didn't say anything. I think the pain meds are making my brain work slower! hehe. He also stated that the rehab on the knee should be my main priority - not thinking about the RSD! I went to bring up my tailbone - and he just stated that he was sure it was doing just fine! He also asked me how my hobbies were doing! Am I not right in thinking I should have someone with knowledge of RSD working on my knee? Thru the last 11 months of PT - I have not always had a therepist with this knowledge and they have mistakenly done things not to my benefit (insisting on using ice, cranking on my knee to the point of tears time after time, etc). I want to do everything right this time to make the most out of my rehab. This ortho dr is the same one that referred me to the pain management dr who made the diagnoses of RSD. But he still always writes on documents "suspected RSD" - even though the pain management and anethesia docs have diagnosed me with RSD. He always acts like maybe I am not in "that much pain". I am at the point I feel like I should be looking for a new ortho doc... but maybe I am on too much pain meds and not thinking right - thats why I need your input! The dr is an older physician, has always been nice until these instances. I am not sure how hard it would be to find a new ortho doc to take my case at this point. oh - and the doc also stated, as he was taking my staples out, that he would be on vacation for a whole month starting next week and wanted to know if I thought I would be having any problems while he was gone...?????..... I just told him I would get back to him! Help - I feel like I am loosing my mind on this! What would you do?
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