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 07-26-2008, 10:02 AM #7
dcrosby dcrosby is offline
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Join Date: Jul 2008
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15 yr Member
dcrosby dcrosby is offline
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Join Date: Jul 2008
Posts: 1
15 yr Member
Default SCS - stimulator experience

I may not be on exactly the right list, but perhaps my experience will be helpful to someone.

I had an ANS stimulator implanted for thoracic back pain (peripheral rather than spinal column) - both surgeries were more invasive than I had expected and I wished I had scheduled more time away from work for more than 1 week after the permanent implant. I think doctor's intentionally don't tell you what the recovery is going to be like??

Like others on this post, I also had trouble with the trial lead being pulled out of place - I went on a business trip flying to Boston - surprised they let me on the plane with wires coming out of my back and a big stimulator unit. The unit worked great on my way to Boston, but with the lead pulled out I was screwed on the way back!

It's true what they say - don't expect a 100% solution. My wife seems to think I'm supposed to be cured now and that I shouldn't need ice packs or still be in pain, what can I say - no magic bullet here!!

Was it worth it - I was just hanging on to be able to make it through a work day and support my family, with serious concerns I would have to become disabled. Now, I'm just managing pain with good days and bad days. If my battery ever dies I get a rude awakening for how bad things were before.

I use my unit full blast all the time and end up charging about 2 hours a day. I've broken about 4 different charging kits now tripping on the wires or bending them wrong - ANS replaces them quickly but I wish they were more hardy.

In case you are using an external TENS or interferential unit - the sensations are similar. They told me that the implant would be more powerful than the external units - it's certainly more convenient and practical than trying to keep the stickies in the right place where I can't reach, but more powerful, no. I would gladly have a second battery and unit installed to blast this pain with more power.

My doctor didn't even mention this option to me, but I know ANS also has an RF option with an external battery - if you struggle to manage the pain with an external TENS or interferential unit, you may want to take a serious look at this.

They tell you not to drive with the SCS turned on - I've been jolted once or twice in the beginning but otherwise I can't imaging driving without the SCS.

Good luck to all!
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