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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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09-13-2009, 02:52 PM | #1 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-13-2009, 04:31 PM | #2 | |||
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hi,
I've had 2 scs and I'm ready to go to the pump. if you pm me I'll give you the site of people who have or are getting the pump. There is so much info. about it. The pump gives you much more freedom and seems to be harder to jar out of position. I would never have the scs again. it also caused my rsd to spread. I'll be looking for your pm. Hugs Mary
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09-13-2009, 09:21 PM | #3 | ||
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just from what I have read, I would go with the pump too....
Love Deb |
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09-14-2009, 01:31 AM | #4 | |||
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i hated the scs it made me spread and the perm didn't cover the pain the way the trial did. not to mention the added hip and back pains from it and being shocked.
i know someone who has the pain pump and they love it.
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09-14-2009, 02:35 AM | #5 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-14-2009, 07:57 AM | #6 | |||
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hey cz.
we have talked alot about it. and i couldnt do any of the things that i do with it. i have had mine since 04. and now am able to work part time. participate in the activities i do with the kids. and just be up and around. and feel like im an actual person again. having the pump doesnt stop the flairs and on a person to person basis it can lower your pain greatly. im happy with it. and would do it all over again. im like you and have cold rsd.. no veins left have piccs all the time. so i understand where you are coming from. pm me and we can talk more carrie
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hope this finds all in less pain . rsd DX 99 had since 98 full body and organ involement,fibro ,pelvic pain ,etc,,,,,, please check out our website to help bring awareness to RSD! . |
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-14-2009, 09:48 AM | #7 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-14-2009, 10:08 AM | #8 | ||
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Magnate
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Now these are just things I have been told through the doctors and things I have read etc. Everyone is different. When I was at Cleveland Clinic the pain pump was suggested as one of the last options to try. Now the scs I was suppsed to try but since I had 2 procedures that increased my pain my doctor felt the scs may as well or may not work if the pain has been there too long and it is in my brain too much. I think more doctors for RSD do the scs then the pump since many are not big on narcotic meds that I have seen and how many have said in the long run it makes one more sensitive to pain and needing more. Now I am not saying people who take narcotics here are wrong because at this point I have no clue and one has to get through the day in the best possible way for the best quality they can get. Just through the many doctors I have seen.
I am sorry for all you are going through and I know how hard these choices are. |
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-14-2009, 12:09 PM | #9 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-15-2009, 12:01 AM | #10 | ||
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I have a SCS and the trial actually worked less than the permanant. For me, I have huge family support and my doctor actually changes out medicines seasonally. For instance more in winter than summer or visa versa. My SCS covers abou 40-50 percent of pain. Which is HUGE when you look at the full scale of 100%. It is a HUGE lifestyle change as I am young and was once an athlete. I have mine in my neck which is harder because it goes all the way down your back instead of just the lumbar spine. Everything worked out wonderfully and I decided to put it in. I never considered a pain pump, as my PM doctor told me the SCS was a option over more medications. I have had mine in for only 3 months, but those 3 months have been great over the incision sx pain from the implant.
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