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My probes moved

I received the St. Jude spinal cord stimulator trial around August of last year. After 6 days. A Rep programmed it and it worked awesome. It relieved 99 percent of my low back, leg and foot pain. I was thrilled! This would change my life. 

 I have spent the last 34 years in pain and it has become so severe that I am basically bedridden. This was a chance for a new life? I am sad to say that when I received the permanent SCS on October 31st of 2017, it did not work at all. From the time of my surgery. I felt a pull and a sting in the middle part of the surgical cut over the spine of my low back. Right in the middle of it there is an indentation. About 2 days after surgery, the anesthesia and the pain medications from the surgery wore off. I could feel this pull and a sting in that area where the wires were anchored to a muscle in my law back and a lot of pain from there to across my low back to the rechargeable battery. The episode that I've been through is much like many other stories I've read on here where you go back over and over and over again with different people reprogramming your device trying to get it to work. When they reprogram it, they're running heavy amounts of electricity through your legs. That's wnere iwas supposed to remove my back pain, my leg pain and the pain in both of my feet. The trial did that, and that's why I went forward with the permanent one. It appears to me that the surgeon anchored the probe wires in the wrong place or either too tight or both because I believe that the sensation that I felt was those anchors pulling and tearing at the muscle. I began to be concerned that the probes must have moved because none of the programs ever worked in any way whatsoever, not even minutely. They absolutely did zero In fact, I believe they increased my pain. I did many test, many different experiments to see if I could get it to wdoing all the things that the reps suggested to see if it would work. I never felt any relief, but then, when I turned it on, I felt like I was having more pain and every day the pain got worse until I just couldn't take it anymore and I would turn it off and then the pain would calm down a little bit and then it would just explode into uncontrollable, excruciating full body pain. I mean, there isnt anywhere on my body that wasn't screaming in pain. My feet hurt so bad it felt like hot irons pressed against them.  It was impossible for me to walk and it still is. Today I had a full blown episode and I really thought that I was going to lose my mind, it's so overwhelming and the drugs that I have don't help. I am sensitive to most drugs, so there's very few things that I can take.

Heres the deal on the doctor and the reps. I didn't see my doctor until 4 months after my surgery. I was supposed to see him at the 3 month mark but the rep took so long in programming my device that the doctor went home without even saying hello to me so that day I got 2 steroid shots from the nurse before I left there.

After being severely programmed and what I mean by severely is that the tech spent over an hour putting very strong pulses through my legs. MY legs were so exhausted the next day I had no feeling in them.

A few days later, I did another experiment. I Kept it on  for 3 weeks until the pain got so bad that I turned it off and then the pain would calm down a little bit for a few days and then it would explode into a major ordeal like I've never had before.

So the doctor, the reps and I know for sure that the probes have moved down from where they were put in. What to do now, I have no clue.

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Comments

  • Your doctor should be able to confirm by x-ray whether or not your leads have migrated. If they have then I think your best option for making the system functional for you would be to have revision surgery to remove and replace the leads. But I would probably want to understand why you got relief during the trial but no relief with the permanent implant. 

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