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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, 08:02 AM | #1 | ||
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Hi,
My motivation for looking back into these options is the isolation of not being able to drive and the ensuing depression that accompaines the isolation. I live about 50 miles from my family, doesnt sound far but I only see one family member on a regular basis, my husband travels about 90% of the time.I am by all definitions , a shut in. In any event. my body rejected the port a cath dr. S put in for my infusions.This was in year two. I had ketamine insusion for almost 4 yesrs. I dont know how many of us have been told our RSD is extremely opportunistic, but i have been. The rejection of the port was a serious one and almost immediate. severe alloydina, edema, infection etc. It had to be removed within a month on an emergency basis up at hahnemann hospital. 30,000 dollars to put in , 30k to take out. wow is right. Following that,( I have cold rsd) I had picc lines put in and taken out constantly as it is near impossible to get an IV line in me. Again they had to keep coming out due to the RSD and severe alloydina and further complications. Now I'm in my 6th year, I'm having alot of GI problems upper and lower, so I am looking at options again. I've read alot about SCS on neurotalk, and its success. But not much about pain pumps. I have been told over and over I am not a canidate to scs for the above reasons as well as because i am full body. Im wondering if anyone has the pain pump. I dont know how I would make it through hte surgery but with the help of my pain mangagement doctor it might be possible. Could anyone share their experiences with a pain pump. what type you have etc. Also, if you have scs, why did you select that over the pain pump or vs versa. thank you so much, I appreciate any input anyone could share, cz sorry this is so long! I really do try to edit my posts and make them shorter!!! |
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09-13-2009, 02:52 PM | #2 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-13-2009, 04:31 PM | #3 | |||
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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 | #4 | ||
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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 | #5 | |||
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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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~*Andrea*~ |
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09-14-2009, 02:33 AM | #6 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-14-2009, 02:35 AM | #7 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-14-2009, 07:57 AM | #8 | |||
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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 | #9 | ||
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"Thanks for this!" says: | Dew58 (09-14-2009) |
09-14-2009, 10:08 AM | #10 | ||
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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) |
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