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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   just an fyi for scs owners (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/31614-fyi-scs-owners.html)

wakegirl 11-06-2007 06:47 AM

just an fyi for scs owners
 
with all three current systems depending on the placement of the leads (cervicle-arms,lumbarr-legs), your rep should be able to adjust your settings so that the coverage moves from the furthest point (fingers/toes) to the closest point (shoulder/pelvis/lowback) can be covered without further surgery. you just need to contact your rep and they can set up an appointment to work on it.
there is however some distinction for a shift from one side to the other and coverage capacity. some doctors lay out leads on both sides which means if your symptoms jump the stim can be adjusted. conversely, some doctors especially those who were working under a set ins budget or as a result of symptoms displayed in only one area will only lay out one side of leads.
so if you have a stim unit (that isnt shocking you...i would be yanking mine too) that isnt functioning as intended you really need to talk to your doc and your rep. if your rep sees you and says nothing is wrong and you still feel like something is wrong with the unit (that isnt life threatening) ask for the reps supervisor to get involved and ask for the unit area tech guys to be involved. at least with abs (not sure about the other 2) if they insert your unit and your unit fails they will deal with it...they are replacing mine.
the cervicle ones, particularly earlier versions, take a very long time to get tuned in so they work well.
there seems to be some confusion

lostmary 11-06-2007 10:11 AM

Wakegirl,

How are you doing? haven't heard from you for a while. If I've told you this before just ignore as my short term memory is kinda bad. I had the trial, I fell in love with it. I was able to put shoes and socks on and walk for almost 3 hrs. My back hurt like anything, but that was ok. I wanted my feet and legs to get better. I did have 2 leads, and several programs. I liked being able to switch from one to the other. I had it out after 5 days. I really want it back..I get the perm Nov 20th. This time in 2 weeks, I'll be in surgery. I know the recovery is painful and kinda long, but if I get the same results from the perm as I did the temp, I will be soooo happy. I'm getting the ans system. Thank heavens that is the one that he chose, and not medtronics. I even went out and got a sleep number bed to help me find a comfortable position. also, I can inflate it all the way up to help get out of bed. I really love it. (that is another whole thread lol)

Hugs
Mary

RSD_Angel 11-06-2007 06:19 PM

Mary,

I have both a PNS and a SCS and had 3 revision surgeries on the SCS. I am not sure what you are saying in your post,... but just wanted to say that in my case.. both of my stims stoped working bc my nerves rerouted around the leads in both my back and my leg (PNS thats on the sciatic nerve) and made the stims worthless. I still have them but dont turn them on because they dont go to where i need the coverage, which is the foot and ankle and toes. I have seen my medtronics rep several times and he was even in the OR with me during the revisions and he was unable to adjust it bc of the nerves rerouting around them!!

I agreee that most probs can be solved by seeing the reps but just so its out there that revisions might be needed, either to get try and get it to work after the rerouting of the new nerves or by bending or lifting something that we shoulndnt have lifted or bent to get and pulled the leads away.!!

;)
Amber

wakegirl 11-06-2007 11:29 PM

lostmary
 
it is true the perm procedure takes far longer as does the recovery, but you will never have to deal with the fear of it being removed (for any reason other than your personal safety).
it is awsome you rocked the temp with such awsome results ...you are totally going to love the perm.
you have more options with your contoler input with the perm, i was stoked about that....better input capabilities means better coverage.
only a few more weeks huh i am sure you are counting the days:)
hang in there i will be counting with you

wakegirl 11-06-2007 11:57 PM

rsd angel
 
i totally agree and i thought that was the content of my post. i am having a revission surgery for my cervicle in december because it hasnt been working.
i really just wanted to remind everybody to make sure they expended all of their options before jumping to ripping the thing out.
just trying to help sorry if i stepped on somebodies toes.


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