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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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03-23-2007, 05:59 PM | #1 | |||
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Hi guys, Im sandy and i went yesterday for a bine scan and went back today to get the results (my drs appointment is not until april 2nd) SOOOO here is what it said
Blood flow imaging is unremarkable, blood pool images demonstrate mild increased soft tissue uptake over the region of the right wrist. on the delayed images there is mild to moderate increased uptake of the right wrist and mild uptake of the small joints of the digits,diffusely. These findings raise suspicion for RSD of the right hand review of the remainder of the whole body bone scan demonstrates increased uptake of the right shoulder likely representing post surgical changes. There is mild uptake in the left shoulder and bilateral hips in a pattern suggestive of degenerative-type change SO whats everyone think? I have a ton of questions now, Because im not that educated on RSD, will i ever be able to move my arm (shoulder) again?? is this swelling in my hand ever going to go away? Does this mean that i for sure have RSD? Will i ever be able to go back to work? And the last question is Should i go ahead with the nerve test or just assume that this bone scan says that RSD is my problem instead of nerve damage from surgery? Sandy |
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03-23-2007, 08:05 PM | #2 | ||
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Hi Sandy,
Well, your bone scan hand findings are similar to mine, but you're lucky, they didn't find localised patchy osteoporosis. I think maybe you should go through with the nerve tests, from your previous posts it does sound to me as if this latest problem began with the surgery. BTW, in a previous post I see I mentioned I hadn't heard of RSD without pain, but I've since looked it up and it can happen. You certainly seem to have a vascular problem, and I'm interested in this ...rash? red line? - you mentioned before, I'd have thought that would be some sort of sign for the docs to go on, but obviously not. The nerve tests aren't too bad - if you do have pain, though, beg them to treat you gently, sometimes the prodding and poking is worse than the tests themselves. Thing is, they may find something definite to begin working on. I wouldn't be completely convinced it's RSD if I were you, either. So I'd go along with any tests they suggest, if they can identify a mechanical problem that's a damn sight easier to treat than RSD, ya know... As far as recovering the use of the arm, whatever they find is the cause eventually, if I were you I'd be doing frequent PT exercises, if you can manage that at all - at this stage, you want to keep as much movement as possible - and moving it is the only route that'll take you back there. I was wondering, do you get pins and needles? electrical zapping pain? Any twitching or odd muscle movements? And is the pain still extending into your chest? I do hope you can get this sorted out soon, all the best |
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03-23-2007, 08:28 PM | #3 | ||
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Are you by chance anywhere near Cleveland?
There is a great Occupational Therapist I know of there who is the one who helped me with my mostly frozen shoulder going. My experience has been if you have problems with your shouler/arm, an Occupational Therapist is better than a PT. This one is really great with RSD people too.... Since there is a really famous RSD doc at the Cleveland CLinic where this OT works, she gets a LOT of RSD people from his practice. She said all the OT people at the Cleveland Clinic are experienced, but the head OT person scheduled me with this one woman, saying "she's the best!"... I had to wait a couple months to get into her rotation because I had to go at a certain time to be back in Columbus in time for working 2nd shift the same day. Well worth it. She worked with me on setting up exercises for 2-3 weeks at a time since I lived far away. I am about a hour from Columbus. I drive nearly 3 hours to get to Cleveland for Occupational Therapy from this woman because I can't find anyone even close to her experience near me. She is just great. Plus, an OT will help you figure out how to do things with your arm like it is... such as better ways to put on clothing, wash your hair, all the things that are very hard to do with a partly frozen shoulder. She also devised exercises for me to do all day long while doing other things.. like using the door in my car to stretch, a shopping cart if you are at the grocery.. any doorframe you are near... she was quite inventive!! I have almost all the movement back in my arm now. Once the winter weather is over, I'll start going back once a month or so for more exercises. If you have had this condition very long, you might be seeing grooved nails on your bad hand, or other changes in your nails. I have always had beautiful strong nails. Now, they are ridged. I want so bad to file them off smooth, but I have to keep them ridged for "proof" as docs are always looking at them. One reason I know it's moved to the other shoulder is that the other hand has grooved nails now. One thing that has REALLY helped me is a really good massage therapist. If you live near central Ohio, I would recommend the one I go to. They can loosen up the muscles of frozen shoulder, and help you work with it. IF you have RSD, massage can really help if you don't have the sensitivity to touch.. and sounds like you don't. The RSD doc I went to in Cleveland that sent me to the occupational therapist said that the Clev. Clinic recent research is showing that massage therapy may turn out to be a key treatment. She was very interested in mine, as I have been going since my injury. I know my therapist well, and she helped me get over my first round of RSD I had in my foot in 2001. I don't think many people here go to one... but I can say that I am still working, have not developed skin sensitivity, and although I am in considerable pain, I do tolerate it without being on the "major" pain meds. I do attribute this to massage, as it seems to be one thing I have done both times that others have not. I had a half sister with RSD, and hers spread too, but she was WAY worse than I am. She could not take it and is no longer with us. I think it's a bit genetic with me, as our father had a lot of nerve related pain.... maybe even RSD that was not diagnosed from what I remember of his symptoms. He broke his back, and had a spinal fusion of some sort back in the 50's and was able to walk, work etc.. but his one leg would swell, turn bright red, his nails on his feet and hands were VERY grooved... some of the things I remember. Anyway, it may be worth trying massage. Try to find one who knows Cranial Sacral therapy. They have more knowledge than others. That's what mine says I should tell people anyway! They have to have a certain level of expertise before they can take Cranial Sacral therapy classes. Jules |
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03-23-2007, 08:29 PM | #4 | |||
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[QUOTE=artist;82489]Hi Sandy,
Well, your bone scan hand findings are similar to mine, but you're lucky, they didn't find localised patchy osteoporosis. I think maybe you should go through with the nerve tests, from your previous posts it does sound to me as if this latest problem began with the surgery.ALL of these problems im having now started 2 days AFTER my shoulder surgery.. BTW, in a previous post I see I mentioned I hadn't heard of RSD without pain, but I've since looked it up and it can happen. You certainly seem to have a vascular problem, and I'm interested in this ...rash? red line?RASH OR RED LINE? Im not sure that i understand what your asking, but i have no rash or red line.. - you mentioned before, I'd have thought that would be some sort of sign for the docs to go on, but obviously not. The nerve tests aren't too bad - if you do have pain, though, beg them to treat you gently, sometimes the prodding and poking is worse than the tests themselves. Thing is, they may find something definite to begin working on. I wouldn't be completely convinced it's RSD if I were you, either. So I'd go along with any tests they suggest, if they can identify a mechanical problem that's a damn sight easier to treat than RSD, ya know... As far as recovering the use of the arm, whatever they find is the cause eventually, if I were you I'd be doing frequent PT exercises, if you can manage that at all - at this stage, you want to keep as much movement as possible - and moving it is the only route that'll take you back there.I have been going to pt 2 times a week since my surgery, I just started doing the wax treatments on my hand last week, not sure its working with the swelling at all BUT the heat feels SOOO good. I was wondering, do you get pins and needles? electrical zapping pain? Any twitching or odd muscle movements?I have numbing everyonce in awhile from my shoulder blade in the back around under my arm and 1/2 of my breast ...Also i have shooting pains that go from my shoulder down, they dont last a long time but do hurt like heck..Funny thing im noticing is that my other hand(good hand) the fingers are going numb and when i was at the mall last week walking my toes were going numb with pins and needle sensations) And is the pain still extending into your chest? No pain in chest...just the numbing everyonce in awhile....I think i will go ahead with the nerve |
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03-23-2007, 09:05 PM | #5 | ||
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Hi Sandy,
Yes, sorry - brain fart on my part LOL! I was thinking of the "I cant bend my fingers and sometimes my knuckles turn almost black" in one of your previous posts. Does sound like circulation problems...I think doing as much movement as possible at home whenever you can should help to at least keep things stable for the present. Yes, doesn't that paraffin wax feel wonderful!!! Apparently you can buy them for home use. Numbing in other limbs as well.. kind of suggests some sort of spinal or cord problem perhaps, but hey, I'm no doctor! Let us know how things go, and good luck, all the best |
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03-24-2007, 09:53 AM | #6 | ||
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Quote:
Hi there. Keep the questions coming! There are so many helpful people here who try and help everyone they can! I know what you mean about not knowing much about RSD. I came here a few months back and I knew next to nothing about RSD, and I didn't even know that there was a possibility of not recovering! So, me being so unknowing, I asked about who on this message board fully recovered from RSD... I think with physical therapy/ occupational therapy you will be able to regain the use of your arm/ shoulder. I could hardly move my shoulder at all, and after months in physical therapy I can lift my arm out straight in front of me, and sometimes a little higher. I can't lift my arm over my head yet, but I am getting there. It is possible to regain function, so don't give up! I have improved a lot in my arms with the PT, and I really think that PT is a VERY important key in getting "better" with RSD.
Don't lose heart, you might be able to get back to work if you keep at it! I hope you can find a good Dr for your RSD, and that you can find treatments that will work for you. |
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