I have my scs put in in october of this year. I have rsd in my left wrist so they decided to put two leads on my left side. immediatly after surgery one of the leads moved to the right side. so i was depending on the one left on my left side. about a month ago i stopped being able to feel stimulation in my left wrist, i could feel it in my shoulder but not my wrist. so i had it reprogrammed and it was fixed. well not even two weeks later it was back to where i couldnt feel it in the needed area. once again i went to have it reprogrammed. after the rep. played with it for almost an hour he informed me that i was going to have to get an xray and go back in for surgery to have the leads replaced! has anyone else had this happen before? i thought this was supposed to be a one stop shot, boom,boom,boom done. the stimulators in and helping. its so frusterating! i mean we knew that the leads would move some but not to the point where i couldnt use the thing at all!
ugh
Amber
Dee. thanks. a neurosurgen did put mine in and they didnt say anything about a cage. when i had my trial stimulator put in, after like a day or two i too ended up having to turn my head all the way to the side just to be able to feel any stimulation. so i understand that.
where do your leads start? mind start about 6-8 inches up from my belt line and go up the spinal column into the middle of my neck. had having the problem with my trial leads moving i asked the surgeon for a neck brace to try to give my neck some kind of stability. but they gave me a foam one and as you can imagine that didnt do much of anything.
but i am kinda afriad of having the surgery again. you know how they say your back will hurt for awhile after surgery until your body gets used to the new implants. but my back never stopped hurting. it kills me daily! sometimes it even hurts more than my wrist. you and once i thinght that maybe the rsd was spreading, but from what ive read you can only get rsd in your extremities. when i asked jay (my medtronics rep.) he said that it wasnt normal to have had the back pain this long and this intense. I saw my pain management dr on friday along with jay. they uped my fentnyl patch dose and wanted to send me back to the neurosurgeon. so i have an appointment with him wednesday morning. but have to get an xray before i go. My mom and girlfriend think that he'll say i have two options; either have the leads moved or replaced or however they do it or get the thing taken out all together. and honestly im not sure the whole getting it taken out it a bad idea. ive been having problems with the stupid thing ever since i got it put in. and i just feel weird having something inside of me. the thing i dont get is that during my trial even though i had to turn my head it relieved some pain. not nearly all but a little bit of it. but the entire time ive had this one it doesnt feel the same and it really hasnt taken away pretty much any of my pain. i dont understand why the difference occured. i would ask for your advice but youre not sure what your goingto do either. Im just afriad that if i get the surgery wither way its going to make my back even worse. ugh. some start to the new year huh! ugh ill be praying for you!
Amber
Hi Amber....The scs unit that they are talking about implanting in me has bigger leads at the end that is surgical placed with some kind of a cage thing protecting it....I don't really understand it myself. You ask where are my leads now...same as yours. as for the back pain....that was where I hurt the worst for the months...and continues to hurt. I have alot of pain with my battery pack....mine is placed just below my armpit...but I can't charge it for the 4 hours...only for maybe 1 1/2 hours...and I have to put a numbing cream over it.
The reason I had the scs put in was to get away from some of the pain medications...but I have had them increased 4 times. And my pain is way out of control. I was to get a pain pump but the Dr. wants the scs fixed or taken out before we move ahead with something else. I'm sure you think the same as I. Well maybe if I get the scs fixed it will work this time...then in your next breathe..how many surgeries will I have to go through to only find out the scs isn't for me....every time they cut on me something I come out feeling worse. Amber I know it is so fustrating. Knowing you had a neurosurgeon put you scs place you scs and your having all this trouble sure makes me think.
Amber I can tell you I have RSd all arcoss my upper back...the burning and pain and stabbing pains...discoloring. I don't have the tempture changes like in my arms. Also where they placed the battery is purple and very painful.
At this point I am going to go see the Neurosurgeon....but I have alot of questions. I wish you the best..at your appointment on the 3rd. Dee
Amber..The Dr. did tell me the other option I had was Nerve Ablation. All this options just scare me. So as I always say, One Day at a Time. Dee
Dee, just knowing someone else knows what im going through is a blessing. i too got the scs to get away from all the pain medication. but just knowing that surgery can worsen rsd im afraid to even get it in the case that the pain in my back might be caused by the beginning stages of rsd. i just dont know. but the weird thing is that with the rsd in my wrist i dont have a burning sensation, discoloration, and only few temperature changes. i only have the stabbing, shooting,aching pain. at first my pm didnt even think i had rsd because of the symptoms i dnt have. but they decided to go ahead and diagnose me with rsd because they cant think of anything else it could be. anyways, i believe the nerve ablation is where they go in and kill the nerve in the affected area. a friend has been through that because of severe pain in his side. but he says they are very painful. so let me know how your appt with the nuerosurgeon goes. im nervous about my appt just because this guy doesnt seem very caring hes just a in out boom boom kind of guy. so that makes me feel kind of uneasy. but ill let you know what he says.
God be with you,
Amber
Re: SCS lead malfunction 
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