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Originally Posted by Jessicav21
Hello everyone, I'm 39 and was diagnosed with RSD due to a work injury. I had a spinal cord stimulator installed in 2006. Due to my surgery my RSD spread to my incisions (neck, midback, & lower back). I have RSD bilaterally on my extremities. I also have bilateral carpal tunnel syndrome & many forms of tendonitis bilaterally. I was recently told that my leads from my SCS that are on my neck, in my spinal cord space have gone bad. Now they want to redo my surgery. I am hardwired from my neck to my lower back. I'm terrified of them having to redo my surgery due to where the leads are. I don't know how safe this is and so if anyone who has had a spinal cord stimulator redone please let me know how it went. I can only remember how after surgery I ended up with neck and back issues, my RSD spread to my incision sites and I have had many bad reactions to medications. If there's anyone out there that can give me some words of wisdom, please help me. Jessica
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Hello Jessica,
Welcome! I am so sorry that you continue to struggle with CRPS. Although Spinal Cord Stimulators work pretty well for conditions like failed back syndrome, they have an extremely high failure rate for people with CRPS. What happened to you with spread to new locations in addition to spread of CRPS to the incision sites is very common for CRPS.
Since you have had these side effects happen you already know you are at high risk for it happening again. Please review the threads below. They include not only my journey with worsening CRPS due to a failed SCS which included revisions that only made me worse and landed me in a wheelchair, but also links to others who have had similar problems.
Also included is an alternative non-invasive treatment tDCS that treats the root cause of CRPS, not just covers up the pain. Unlike SCS it is non-invasive, low risk and can halt or reverse the progression of CRPS. SCS do nothing to slow the progression of the disease.
For most people with CRPS, SCS will eventually just stop working, within anywhere from several days to several years, despite risky revisions.
Please educate yourself. There is a very real possibility that continued SCS surgeries will make you much worse. I didn't listen to the inner voice, rather I listened to members of on line support groups for CRPS patients with SCS, most of whom had their SCS for less than three years. Looking back these groups were more prayer groups than research based and accurate information based.
http://neurotalk.psychcentral.com/thread161951.html http://neurotalk.psychcentral.com/thread163281.html
I will keep you in my prayers.