Need Help RSD & Spinal cord stimulator
 

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

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.

Hello Jessica and welcome. I am very very sorry to hear what you have been going through. I do not have a SCS but I am glad that James popped in with his experience. They scare me to no end. All I can say is that if you are scared and not comfortable with the idea of another surgery...don't do it. Definitely look into all of your options and then choose whatever you feel most comfortable with in the long run. I have been using tDCS for a month now and for me it is the best option because I am very comfortable with it (non-invasive, no side effects, can do it myself at home, very cheap, etc). If you are scared about the risks of another SCS surgery then perhaps tDCS would be an option to try BEFORE any sort of invasive surgery.

Hopefully other members with more experience specific to your situation will pop in so that they can help you to make an informed decision. I find that, unfortunately, most doctors do not act as a good resource for helping you make an informed decision about a thing like this. For me...I don't think a SCS would ever be something that I would choose myself given what I know now and knowing that I had spread after something as basic as a lumbar sympathetic block...wouldn't even want to think about what could happen after surgery...yikes. But that's just how I feel about it and I strongly believe that everyone needs to make the decisions that they feel in the end are best for them. But I strongly believe also that you should NOT go ahead with the surgery until/unless you are completely comfortable with the decision you are making and the possible risks that you are taking by undergoing the surgery. Too many of us make decisions when we are so desperate that we will do anything and then regret it later.

Take care and I hope that you get some relief soon. Good luck.

I had a revision surgery done with my SCS but it was only just 2 months after the implant. How much relief does that that SCS give you? Does it make a huge difference in your pain? I guess the question is how much are you willing to risk for the relief that it has provided you? You can also talk to your doctor to maybe see if there are any precautions they can take before the surgery like blocks to help with spreading.