CRPS in the City

Because living in nyc wasn't crazy enough!

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iinevitablelove asked: Hey there, I hope you are doing better. I know what you are going through, I have a very close relatives that suffering from the same diseases but she has it in her leg for almost 4 years now. And she will be doing the SCS implant. I just wanted to know, was there any specific reason that SCS didn't work for you? take care and Thanks in Advance!

The SCS actually did work for me. It’s the only thing that’s ever been truly effective for my pain. I did however run into a number of complications.  My first SCS leads were percutaneous leads or “spaghetti leads”. They are basically long straight wire electrodes that put into your spinal column. It’s a much less invasive surgery and easier to recover from.  That said, it’s less secure. After my surgery I lost 25 pounds rather quickly. With that weight loss, my battery shifted and pulled the leads out of place and my SCS stopped working. I had the leads put back in place but ultimately they moved again.

I then switched to a paddle lead. The paddle is an oar shaped electrode and basically is sewn to your spinal cord. That puppy isn’t going anywhere. Now, there is always chances a paddle could break or move, but if that happens, you’ve probably been involved in some bigger trauma and you’ve got much bigger problems.  When my paddle went in February 2013, I immediately had much better coverage than with my perc leads.  Unfortunately I got a really bad post-op staph infection. The infection almost killed me.  I eventually did recover after many months in the hospital, multiple surgeries, lots of meds, and countless complications. 

Back in October 2013 I had the SCS put back in. It’s been awesome and given me a lot of relief. Sadly my CRPS is starting to spread into my shoulder and chest. My SCS really only stimulates my arm, but doesn’t hit my shoulder. I have great coverage from the elbow to my fingers.  I may need to get another lead put in in the future to cover the spread of my CRPS.  

With all my complications, I still must say, the SCS has been the best treatment for my pain. I know it doesn’t work for everyone, but I highly recommend people do a trial. The trial isn’t much more invasive than a routine nerve block and then you know if this is a good treatment option for you. I hope the SCS helps your relative. No one should have to live in pain.