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Dealing with CRPS

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:22 AM in Pain Management
I have been diagnosed with Complex Regional Pain Syndrome (CRPS) and my life is agony EVERYDAY! I am in physical therapy 5 days a week to try and treat it agressively and leave there most days in tears. I am seeing specialists in Virginia for my back that was injured also with my accident but my CRPS WAS being treated by a specialist at John Hopkins. My phsician at Hopkins has decided not to proceed with any more Sympathetic Nerve Blocks due to their ineffectiveness and the excruciating experience of getting them done. I am now being considered for a Spinal Cord Stimulator and have some mixed feelings. Most of me wants anything that will reduce/rid this constant pain but there is a small part of me that is frightened. I am terrified at the thought of having something implanted in my body and connected to my spinal cord. Anyone who reads this and can provide a little more information on your experience with your surgery please feel free to share. Ex: surgery details, hospital experience, anesthesia, post-op recovery, etc.


  • Jordan,

    Welcome to Spine Health. Deep breath! Relax! We've got ya! Hang in there!

    Sorry to hear about the CRPS. I can definitely understand the frustration and the pain and the fright! Just ask my friends here, they'll tell you what a basket case I was when I went for my SCS. One of the docs diagnosed RSD (original name for CRPS) in my shoulders ... I didn't care about the diagnosis, I just needed pain relief!!!

    3 months ago I flew back to Bethesda and had an SCS implanted, and I can tell you in a matter of moments my life got dramatically better!

    Having something implanted isn't a big deal. Think about the millions of people with pacemakers, pain pumps and all the folks with titanium in the bodies, from their toes to their heads. It's been going on for decades. Neurostimulators have been around since the 60's and they have become more efficient, smaller and have much greater battery life.

    The good thing is, that a trial will be done before anything is implanted in your body. If it works, I bet you won't think twice about the implant. If it doesn't work, well at least you'll know that you tried!

    There's a bunch of threads on spinal cord stimulators in the Pain Management Forum. Check it out, you may get more personal type info to help you out with your nerves and decision.

    You are welcome to PM me anytime.

    Hang in there!

  • Jordan,

    You need to think of it in smaller steps. Try the "TRIAL" and I will be glad to give you all information I can. After you make your decision for the trial the next step will be the psych exam.

    Piece of cake, they just want to know: that you want to feel better, you are following your doctors instructions, you have supportive people around you and you don't abuse street drugs. I think this was a 10 min conversation with this therapist referred by my PM doctor.

    Let us know what you decide and we be there for you! I know two other people with CRPS / RSD and now they can't imagine life without their SCS.

    PM me anytime, I just had my implant, not turned on yet but I am progressing well.
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