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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=Kris with RSD;4133279]I have had RSD since April of this year. I have had many nerve blocks, all of which have failed and I have been in Physical Therapy since June. My RSD started in my lower left leg and foot. Since then it has spread into both legs and feet and is slowly moving up both legs to my hips. I don't know what to do anymore. I can barely clean the house, it takes me over a week because I can barely do one room at a time. I am no longer able to work either. I can only walk for short periods of time, can't stand very long. I use a cane now instead of crutches (I was on them until late August eary September), so that is a plus. I miss my life. I'm only 24 and am having to file for disability. My doctor has recently decided to stop all nerve blocks (don't know why he didn't do that earlier) and said he wants me to do P.T. for a couple of more months then do a Spinal Cord Stimulator. I am really scared. I've tried researching it online but Im still unsure about it. Has anyone out there had it done?? Is it dangerous?? I had a tonsillectomy that did not go well for me, so this is really freaking me out!! Someone please send me some information, especially if you have had to do this too. Thank you so much!!

Kristie[/QUOTE]

I am 26 and have had RSD for about a year and a half. It started in my left lower leg and spread to my other leg my back and is now my entire body. The first pain mgt. doc I went to (at the time it was just the left leg) recomended the spinal cord stimulator. I have a complicated medical history and am undable to take the meds. they would usually try prior to the stimulator. My insurance covered him as a doc. but wouldn't pay for his office to put the stimulator in so I was referred th The Cleveland Clinic and the doctor I saw there said there was no way I should even be considering the stimulator at my age. There are a lot of problems with the leads not staying where they are supposed to and you would have to have additional surgeries regularly for batteries and stuff and he said your talking a lot of scar tissue forming and any sort of surgery can actually make RSD worse. He said I should try ketamine infusions before he would even consider SCS. I have an appt. the 9th to discuss more details about the ketamine infusions. The research and info. I have found on numerous sites including this one about rsd and spinal cord stimulators makes me glad that the doctor wouldn'tdo the procedure because it sounds like it definately is not the best treatment for me to try at least. And to begin with I was all for it but the more I talked on here to people that have already tried them the more I relized I was not the best idea.
Good luck with whatever you decide!!
Hang in there
cardshark





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