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 09-21-2012, 01:35 PM #1
DebraKosbar DebraKosbar is offline
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Default Bad News!!! Need Advice!!!

Well went to my knee surgeon about having a replacement, he said no way will I do surgery on me with the R.S.D. Only if you have a nerve doctor tell me that your R.S.D will not go into the other knee that I should replace... Well guess what there is no gaurantee that it won't it's a gamble and I don't think I can gamble like that again... So now they are sending me back to the doctor that want to do the nerve block yipee can't wait poke and poke hate it but I will try anything... One thing is for sure 3 specialist has said my knee needs a replacement and all 3 said they won't touch me so now what do I do any advice for me? This R.S.D SUCKS!!!!
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ginnie (09-21-2012)
Old 09-21-2012, 01:45 PM #2
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I am very sorry that this unfortunate event is going on in your life.
I guess what doctors see in you is called "liability." RSD is on the top of the list when it comes to suits in the medical field these days.
All you can do is think positive and hope that even though they say they won't work on you, maybe it is the best thing. The rsd complications could very well outweigh the benefits of the knee surgery.
I'm only trying to give positive words and I hope things work out for you.
Best wishes.
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Old 09-21-2012, 01:49 PM #3
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So they don't think doing blocks before / during surgery will help?

I'm not an expert on this at all, just asking from reading prior posts about pre surgery blocks to help prevent spread from surgery.

And I don't know if anyone has done this and came back to say it worked or not. Also don't know of any time frame post surgery it might cover for, weeks/months /etc...

I'm sure more knowledgeable members will reply with info about this.
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ginnie (09-21-2012)
Old 09-21-2012, 07:25 PM #4
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Default Hi Debra

[So sorry to hear about you needing knee replacement, and not being able to do it. I am in your same boat. I have three torn tendons in left foot including the archilles. this colapsed my foot. I can't have the repair because of the RSD either. Won't touch me. I do limp, and use a new lotion for the RSD that helps. Was so mad about all of it, I asked to be weaned off all narcotic, to try this lotion. It wasn't helping the foot colapse or the RSD. I guess with both of us, it is better to be safe than sorry. I don't think either of us really know what the future will bring unless they find a cure for the RSD. I will keep you in my thought and prayers. ginnie
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Old 09-21-2012, 10:27 PM #5
reluctant@thetable reluctant@thetable is offline
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Hi Debra.I have a similar problem though not quite so serious. I have a problem with ligaments in my foot. Ligaments are notorious for healing slowly. Any treatment that I receive has initial good results only to quickly fade away as I exercise my foot. When I met with my pain md, I asked how much my initial injury was impacting my attempts at remission. He is referring me for a second opinion from a different foot/ankle surgeon. He told me that, if it's felt that my initial injury is impairing my progress and needs to be repaired, I would have the surgery with adequate anesthesia and I would be sent home with an epidural in place until my foot healed. I'd have home visiting nurses come to my house. So, I guess in my case, surgery could be done with the assistance and input of my crps doctor. This comes after I had been told by my original foot/ankle surgeon that he would not operate and after my initial pm anesthesiologist signed off on me unless I had a scs put in by his associate. I guess I would say, if you really feel you need surgery, call other pain specialists who specialize in crps and see if they could give the appropriate, long-term anesthesia to aid in recovery without a spread.
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Old 09-26-2012, 01:49 PM #6
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Default Hi reluctant

I have ligament tears too, and it colapsed my foot. I did got to two doctors, and it was the orthopedic specialist who said not to do the surgery for worry about the spred of RSD. So Sorry for all of us. ginnie

Last edited by ginnie; 09-26-2012 at 01:49 PM. Reason: spelling
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Old 09-26-2012, 10:30 AM #7
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Quote:
Originally Posted by DebraKosbar View Post
Well went to my knee surgeon about having a replacement, he said no way will I do surgery on me with the R.S.D. Only if you have a nerve doctor tell me that your R.S.D will not go into the other knee that I should replace... Well guess what there is no gaurantee that it won't it's a gamble and I don't think I can gamble like that again... So now they are sending me back to the doctor that want to do the nerve block yipee can't wait poke and poke hate it but I will try anything... One thing is for sure 3 specialist has said my knee needs a replacement and all 3 said they won't touch me so now what do I do any advice for me? This R.S.D SUCKS!!!!
First - yes, totally agree - RSD SUCKS!! I have been struggling with worsening knee issues in both knees for about a year. My RSD is in my upper left extremity. My doctors have also wanted to steer clear of surgery because of the fear of the RSD spreading. My knees are both bone on bone - maybe 30 years of regular aerobic walking prior to RSD followed by none for a full year and very limited since - who knows. Regardless I have had cortisone shots in both knees and am in physical therapy learning isometric exercises to strengthen supporting muscles that support the knees. I have experienced some relief thankfully. My next step is a series of injections under the kneecaps with a silicone type of material that can buy me time. Just some ideas in case they might be helpful to you. Best of luck!!
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Old 09-26-2012, 01:42 PM #8
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Default Rsd spread

I had my rsd spread thru out my body from a hip replacement ,,my advice,,,don't do it!,I wish I could go back to plain old arthritis pain,,now I can't do anything...the surgery took away my life

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Old 09-26-2012, 01:47 PM #9
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Default Hi Debbie

so sorry..... I was told not to do the surgery to my foot for the same reason. Too much chance for RSD to spread. I second your opinion. take care, in fact to all of us with some form of this condition. Prayers and hope to all. ginnie
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