Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-29-2006, 01:03 PM #1
TerriM TerriM is offline
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Default Spinal cord stimulator

Can anyone help me with info if they have had this done (scs), weather it worked or not. I am so confused if I should have it done next week. RSD in left hand and now moved to right shoulder. I would prefer to hear from patients rather just the dr. opinion. Thanks
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Old 10-29-2006, 07:19 PM #2
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you sound just like me! my rsd started in my left arm (fingers to elbow) then i had the trial... worked great! then my insurance kept putting off my stim implant... i was getting worse during this time... i had the implant... spread up to my shoulder and it just didn't help me anymore. its not that it wasn't working... it worked fine, it just didn't help enough. it different for everyone tho. i'd at least try the trial and see if u even like it or if it helps u. if u have any questions ask away!
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Old 10-30-2006, 11:00 AM #3
beth beth is offline
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I'm getting the permanent implant this Friday! Had the trial, worked great til morning of last day, when it moved and lost contact. Dr. is going to insert the leads one level down so there is better contact - just pray he has no problems getting into the epidural space!

I have full-body RSD and TOS, been through 2 TOS surgeries which made the RSD much worse, tried the Lidocaine IV treatment and had a reaction to it, did well with the Ketamine IV treatment, but wore off after 5 months and remaing booster treatment did nothing, plus insurance co. refused to pay, AFTER I went through with the treatment.

So I'm out of options and reallllyyyy tired of the pain, I trust my Dr and he's had great success with the Advanced Bionics SCS for the upper body. (Lower he always goes with Medtronics cause it has the most power). I slept like a BABY during the trial, got the first real sleep I've had since injured, the kind that leaves you refreshed and with energy. My arms were almost pain-free and I could cope with my other pain. Overall I'd say I was a 3 and I haven't been at a 3 for more than 3 years.

So I'm taking a shot at it - his sucess rate is 85%, so it's worth taking, even though I'm a little trickier than most. I go in at 12:30 Friday, wish me luck!

If you haven't exhausted all options or don't feel your pain is more than you can bear with meds, exercise, relaxation techniques and/or what have you, then you might think deeply whether you need the SCS at this particular time - I know I resisted the idea until it became it became fairly clear this was the next step. If this fails I will likely get the pain pump, but my Dr and I agree we want to try this first!

Best wishes on your decision,
beth
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