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Failing SCS Trial?



  • It's to bad that it sounds like you crashed and burned with the stimulator. I still think you have something else going on. A lot of your problems sound similar to what I was dealing with 8 years ago when I ruptured my L5/S1 disc. I was recovering real nice, was sleeping well, but experiencing difficulties sitting, standing, and walking. Mind you, the difficulties were minor at best compared to what you are feeling. On my last day of PT, everything went to hell in a hand basket when a disc fragment severed some nerves and found a home in a very bad spot. Needless to say, I went from bad to worse in a matter of milliseconds. This fragment never showed up on an MRI or XRAY.

    I'm concerned that your team might be missing something. For me, the scar tissue problem causes the pain to always be on. There is no reset but there is varying degrees of discomfort, much like a dimmer light switch. If I were you, I would seek out an independent consult to make sure that nothing is being missed here.

    Hope your back goes back to normal after they pull the lead out.


  • It's 3 days post trial, how's it going?

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  • I have paddle leads in the coccyxal area and it works wonders. My doctor has been doing them for several years with great success for many different types of pain.
  • Dave, thank you for your thoughtful comments. I have seen 21 doctors about my spine problem. Some have taken more time than others to look at my radiological images. I have explained the diagnosis from the more thorough doctors. My PM doc prescribed PT and Trileptal after pulling the lead. I will continue to pursue other options.
  • Dave, I am now one week post trial. The ANS rep was very disappointed with the outcome. She did her job well during the trial. She said -- on her way out the door -- that I was more knowledgeable about SCS than most patients. Yes, but no permanent implant means no sales commission.

    My doctor gave me a prescription for Trileptal (Oxcarbazepine). I will try it after I get my affairs together. However, I will try Oxcarbazepine with trepidation as 24% of patients have adverse side effects, and some of them look very unpleasant. I will start a separate thread on that in a different forum.

    The train trip back was more difficult than before the trial, due to a really annoying backache. Since returning home, my wife and I have been more than disappointed. Our hopes and dreams that I could return to a semi-normal life have been dashed. I am trapped in my house without the ability to drive anywhere. I cannot even drive to my local doctors, to the pharmacy or to physical therapy; I must rely on my wife for everything, and she is getting very tired.

    We are in a downward spiral of dispair.
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  • Sorry to hear you and your wife are bummed. I don't wanna kick a man when he is down, but you were out of line in your sarcasm aimed at Susan. Susan's point has some validity to it. An SCS works well against nerve pain generated from damaged nerves. On the flip side, I don't think it works well with with nerve pain from compressed nerves (mechanical nerve pain). I believe I experience both types of pain. The pain from the compressed nerves receives no relief from the SCS where all the other pain is serviced rather nicely. That is what I think Susan meant. She can correct me if I'm wrong.

    Have you ever tried Savella? This was the last drug I tried and had I not suffered from its side effects, I would have found a drug that would have prevented me from getting an SCS. The drug is in the class of Cymbalta but is designed specifically for nerve pain and doesn't carry some of the Cymbalta baggage. Just thought I'd throw something else out there.


  • Most people who have had an SCS trial have reported back pain for a day or two after the insertion of the lead. I referred to that as feeling that I must have been kicked by a mule.

    Dave, you said the back pain from the lead went away after the lead was removed. How long after?

    I have been annoyed by more back pain than usual after my SCS trial lead was removed. Last night I was awakened at 12:45am by an intense axial thoracic burning. 500mg of acetaminophen was not enough to reduce it, so I took another 500 mg at 4:30am, and that was enough for me to get another two hours of sleep.

    I realize some spineys have back pain that keeps them from sleeping and cannot be reduced by acetaminophen. I have great compassion for these people.

    However, in my case, before the SCS trial, while lying supine I was never awakened by back pain. Is this something that is going away over the next few weeks? Or do I have a new pain to stay with me in addition to the leg pain that SCS did not touch?

    It has been 19 days since lead insertion and 12 days since lead removal.

    I am worried that scar may be forming in my thoracic epidural space as a result of the irritation while the lead was in the spinal canal. Is that going to be a long term problem?

  • I went from trial lead removal to permanent implant the next morning. I had the feeling of being hit between the shoulders with a baseball bat for about 2-3 weeks. The pain was tolerable with Tylenol and the worst part of it was resolved by day 3.

    You might give the doc who did the trial a call and let him know of your continued pain.

    Hope you feel better soon.

  • I appreciate the concern about my situation.

    However, I do not agree that one does not have Nerve Pain if it cannot be reduced significantly by Spinal Cord Stimulation (SCS).

    Nerve pain can come from damaged nerves, or from nerve impingement. According to my NS and my PM, I have the latter.

    For example, I have pain in the leg after sitting.

    Also recently, after driving my automobile 2.5 miles or five minutes, I got out and after walking 100 feet I had intense leg pain.

    I call these examples nerve pain.

  • It has now been one month since my SCS trial lead was removed. I have had significantly more back pain and backaches than before the trial. However, over the past week, I have been taking a low dose of tizanidine, which seems to ameliorate the back pain but not the radicular pain.
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