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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I have arthritis and CRPS or RSD - Re arthritis was using unloader brace and getting around okay when i had car accident. The unloader brace ramped into the knee when I was rearended forcefully and damaged branches of the saphenous nerve. Now I have CRPS which left me completely immobile for a while, now on drugs and water therapy but still have burning sensations. Am on Clonazepam and Neurontin and well as Celebrex. Of course, I am in a law suit over the accident. I will be going to a Pain Clinic which may or may not get rid of the CRPS ( probably not since I have had it for four years -misdiagosed for 2 years). I cannot wear my brace because it rests on the nerve and makes things worse. My Orthopedic doctor says I can never have a knee replacement in his opinion even if I get rid of the CRPS pain because no doctor will ever be willing to disturb the nerve - that once you have CRPS, you have it for life - if the pain goes away, it is only in remission. Is this true. Does anyone have any information on the subject of operations on someone who has or has had CRPS. I don't ever want to have the severe pain return - it might spread - it spread to my other leg for a while. My arthritis is getting worse because I cannot wear my brace. My guess is I will be in a Power Chair from now on. I need solid medical information and I do not think the doctors here are as up to date as other places and perhaps someone else has been through this senario. Laura :wave: :eek:
To RSD Trinity - thanks for your reply - there seem to be many other threads on this site that indicate the spread of RSD from secondary surgery. It may be that the surgeons did not do a sufficiently deep block. I know I had a small office procedure done on the side of my leg in the doctors office and it caused the CRPS to go wild for a month. Then because it was a melanoma, they went at it again, only this time they put me in the hospital and gave me an epidermal. Had to fight the anthesiologist to have it even though my Pain Management doc had requested it. But it did work and no pain at all for three weeks. Then it came back. They then tried a nerve block for the lower leg only but it paralized my hip flexors and did nothing for the knee pain and scared the doc so bad he refused to do another, so I guess it depends on who is doing it. We do not have many pain management doctors here in Victoria and eventually I want to go to Vancouver. I have been on hundreds of web sites but very few address the idea of surgery right at the site of the CRPS. Thanks again and if you have any other ideas, please let me know. Laura :)
[SIZE=3][COLOR=RoyalBlue]Hi again Laura,

I forgot to address your question about surgeries with RSD. I've had MANY surgeries since my diagnosis and for most of them had epidurals put in for a few days after the surgery and I never had a problem. 12 of these were knee surgeries which is what you might be dealing with. As you know, everyone is different, but that's been my experience. I've also had surgeries in areas that didn't have RSD and it pretty much didn't spread to these areas. The only problem I've had is my shoulder surgery. I now have RSD in that arm (not bad though compared to my legs) and come to think of it, they didn't keep a block in after surgery so maybe that's the key. Who knows? Good luck.

Sharon :)[/COLOR][/SIZE]
[QUOTE=sharon1030][SIZE=3][COLOR=RoyalBlue]Hi again Laura,

I forgot to address your question about surgeries with RSD. I've had MANY surgeries since my diagnosis and for most of them had epidurals put in for a few days after the surgery and I never had a problem. 12 of these were knee surgeries which is what you might be dealing with. As you know, everyone is different, but that's been my experience. I've also had surgeries in areas that didn't have RSD and it pretty much didn't spread to these areas. The only problem I've had is my shoulder surgery. I now have RSD in that arm (not bad though compared to my legs) and come to think of it, they didn't keep a block in after surgery so maybe that's the key. Who knows? Good luck.

Sharon :)[/COLOR][/SIZE][/QUOTE]
Sharon - are you saying that you had the surgeries in the same spot exactly where you originally got the RSD. Mine is my knee. If so, would you mind telling me where you went for the deep epidurals, if you can, or at least what city you are in. My first Melanoma surgery on the same leg made the CRPS go absolutely beserk. The second with the epidermal was much larger but did not cause a reaction so I think you may be right about deep epidermals but I had such a fight to get it. Nearly got off the operating room table because that is when the anthesiologist told me he disagreed with Pain doc and was going to do it under a General. You could have heard me scream on the other side of the city. His comment finally was "??? and keep quiet - I will give it to you". I did not talk to him before but no operation will ever be done on me without me speaking with the attending anthes. Look forward to your reply. Laura
[QUOTE=RSDtrinity]I just wanted to ask quick, you say that you swim in an 82 degree pool. I was swimming after my stim was installed to try and get back into shape. The rsd has put me horribly out of shape. But, without my stim now I can no longer tolerate the pressure of the water. Showers are alright, but do generally send my leg into a flare for at least a couple of hours (so I plan my showers accordingly). I've tried getting in the water a few times and it's alright as i'm getting in, but as soon as my leg is submersed the pain is unbearable. Do you do anything specific for pain, or is water not an issue with you?? Just wanted to ask and see if there's anything else I might try. I really want to exercise, but cannot with my whole leg involved and no stim. - Jessica[/QUOTE]

Hello Jessica While the touch and pressure of the water bothered me when I first went back after the car accident, it was only minor compared to what you are describing and either the drugs Clonazepam and Gabepentin plus Restoril for sleep or the amount of exercise I forced myself to do, started to release endorphins and I can now stay in for an hour or more and really exercise. If I do not go for four days I start to stiffen up and my pain levels increase drastically so it has got to be the movement in the pool that does the trick. Maybe a really warm pool in a rehabilitation center would work for you. I guess I am one of the lucky ones, in that it is heat that bother me not cold. I cannot run warm water over my knee, nor can I get into a hot tub. The cool water is actual a relief factor, and that enables me to be quite active in the pool so long as my feet are not touching the bottom and I don't bear any weight while exercising. Don't know if this is of any help to you, but hope so and wish you the best.
[SIZE=3][COLOR=RoyalBlue]Hi Laura,

The original site of my RSD was my left foot after a fracture. I had RSD for three years before it was diagnosed. During that three years, I had one knee surgery. After the surgery, I guess the RSD signs were more apparent plus I went to a doctor who actually knew something about RSD. Because of all this, I got the diagnosis three years into it. So, no my surgeries weren't in the "original" site, but looking back, it was in my knee before the first surgery.

I live in New York (Long Island) and my docs are at The Hospital for Special Surgery in Manhattan.

I hope I answered your questions. If not, let me know and I'll try again.

Sharon :)[/COLOR][/SIZE]





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