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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 10-08-2005, 11:11 PM   #1
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Join Date: Sep 2003
Location: LA USA
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brighteyes_007 HB User
My Turn To Ask...spinal Cord Stimulators

I have had RDS since 2001...now after 4 years we are to the point of doc wants to do trial test and implant.

I have scanned posting concerning this and have always thought ..not for me....

would anyone like to share good and/or bad out comes with me?

How does this effect yoru movements? I know pain is lessened or gone but like daily activites?

thanks
Brighteyes

 
Old 10-11-2005, 11:41 AM   #2
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Join Date: Jan 2003
Location: New York
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RSD_Angel HB User
Re: My Turn To Ask...spinal Cord Stimulators

I have 2 stims implanted, a SCS and a PNS (periheral nerve stim). And they are both from Medtronics.

I first had the SCS put in 2 years ago for my RSD in my right foot and leg. It worked through the trial and also about 4-6 mos into the perm. but it stopped working after that. I had 3 revision surgeries to try and get it to go to my foot and it wouldnt. It was also hitting the nerves to my bladder so everytime i turned it on or up a little it zapped my bladder making me have to goo bad... i now know where every bath room in my 3 surrounding towns...lmao.. gotta laugh i guess.. So that stopped working totaly and my doc gave up on the surgeries and also having the medtronics guy mess with the controls, so i had the PNS implnated

The PNS is implnated in my right upper leg. And the generator is on the outside of my thigh. I had that one put in a year ago in may. Again , like the SCS , the trial worked wonders (i would suggest doing the PNS before the SCS, less chance of the leads moving and better coverage)and had the perm implnated and like the scs it stopped working about 3- 4 mos into it.. they tried to play wit the controls in the generator and it wouldnt go past my knee and it would acutally spaz out my leg and put it into a flare if they turned it way up to see if it would go. It would also kick my knee out from under me and make it soo tight i couldnt straighen it out and the only way to releive that is to turn it off, and i didnt have the remote the med troics guy did and because it kicked my knee out i feel in the chair behind me and was screaming to turn it off nad he was trying to find the spot where my generator is so he can turn it off.. uirghh anyways.. that was not fun.

But i would at least think about getting one... they helped alot with my pain when they worked and would do it again even if i knew that the outcome was what i had. You never know what will and what wont work and thats the worst thing with RSD... ??? Just wanted to give you my expirences with it and if you have anymore q's let me know.. will be more then glad to help ya!

As far as movements , you are very limited in your movements when you have the trial as well as with the perm. one when its implanted for up to 3 mos. you cant really twist, bend to touch your toes, lift anything heavier then a milk jug. (ONLY for the SCS one) you cant do this because you cant move the leads that are up your spinal collum and if they move then that means you wont get the coverage needed for your RSD pain and also that means you will need revison surgery to put the leads in the right spot again.

It wasnt that bad and i got used to it , its nice to not be able to do stuff and have others do it for you...lol

When the SCS and PNS worked i was able to do more "normal" daily living stuff. I was able to walk around to do vacume, nad set the table and dust and little stuff like that... its really amazing what we really cant do with our RSD pain(at least with me bc its in my foot and leg and back). When the pain is gone or better we are like hey.. i can do this and then once that luxurey of pain relief is gone, its like we are back in our shells again. I didnt know how bad i was until i was in less pain due to the scs adn pns and also the lumbar infusions.. i truly miss my life... but right now i have to fight to get it back and by goolly i will , no matter how long or hard i have to !! dont give up either!!!

Last edited by RSD_Angel; 10-11-2005 at 11:42 AM.

 
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