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SCS failed trial-can someone help me?

ihurtalotiihurtalot Posts: 4
edited 06/11/2012 - 8:58 AM in Sacroiliac (SI) Joint Problems
Due to SI joint, L4-5 disk problems I had a temporary neurostimulator procedure done on friday. They had trouble getting the stim to affect the SI and right hip area, but sent me home with it anyway. by the next afternoon, I still had no relief for the painful area, plus had terrible cramping in my right leg and on Monday morning, called the pain clinic to see what could be done. Then I went in on Monday and the device rep reprogrammed the stim to reach the painful area and i thought I had gone to heaven because it felt so much better. However, by that evening both legs were hurting and on Tuesday morning, I had trouble even raising my arms. I went back to the clinic and had the leads pulled. the PA for the pain doc told me that the arm pain was rare and asked if I had fibromyalgia, which I didn't. she gave me pain meds and told me to go home and come back in a month. Ok fine, however, I am in massive pain now--not only do I have the low back and hip pain, but excruciating muscle pain in my arms and legs. It is hard to walk, to sit, to raise my arms. I am besides myself and suspect that this affect is due to overstimulation of the spinal cord. Has anyone had this experience? If so, did these muscle pains go away and if so, how long? I don't know what to do to find any relief right now. Thank you so much for reading this


  • Hi Karen, I'm really sorry to hear of your experience. I asked about a SCS at the Johns Hopkins Pain Center and they told me that it is not used for inflammatory pain such as that associated with SI joint pain syndromes. It is used more for diabetic nerve pain in the feet and legs. I inquired because my local PM dr wanted to give me a SCS for SI joint pain! I am so glad I got a second opinion on this. In reference to your question, although I haven't had this done, it is my understanding that the trial is pretty low-risk and I doubt you are stuck with a long-term problem as a result of it. The implant of the actual device is a much bigger deal and riskier from what I know. So I am thinking you may just have to hang on for a short while and keep yourself well doused with pain medication (they owe it to you). I am hoping that someone with actual SCS experience will better be able to respond to your post. But I did want to pipe up and give a few words of encouragement. Best wishes to you. Lisa
  • Karen,
    I'm so sorry your trial failed and you have add'l pain. I've had a SCS since 1996 and it's a godsend. Athough I've had issues, like a cracked lead, I still couldn't imagine life w/o it. I've had both SI joints fused, before the SCS, and it was successful. It sounds like there are newer methods than when my was done. If fact, in 1995 when mine were done, I couldn't even find a dr to give me a true 2nd opinion. They had not even heard of it. I had given up on Johns Hopkins Spine Clinic years before that. Back then pain clinics were not around. I really don't know about using the SCS specifically for SI pain. I had gone to Univ of MD for a 2nd opinion and was told "unless you recently fell from a 2nd story window, you could not damage your SI joint"! It's at least nice to hear that's not the norm now. I had to call a dr in upstate NY/Canada that taught my dr at the time how to do SI joint sclerosing injections to get an opinion over the phone!

    I hope your new pain resolves itself. Could there have been any kind of breech of your epidural lining that would cause some kind of inflammation? I think that is a risk of placing the leads, since they are put right on top of the epidural covering.
  • I am curious at which level of the spine were the leads placed? Also what was done to confirm your low back pain and right hip pain was from the sacroiliac joint. thanks
    Amish R Patel DO, MPH
  • ihurtalotiihurtalot Posts: 4
    edited 09/03/2012 - 2:34 PM
    Oh my gosh, I had no idea that anyone responded to my inquiry until today when I posted something about my husband. Why on earth don't we get emails when someone responds? Anyway, the problem was not the stimulator! It was LEVAQUIN. I had a serious, toxic reaction to that antibiotic they gave me during the trial. I nearly died from the side affects and am still suffering, though I am better than I was before. I apologize for not responding, but I just had no idea! Thank you all so much!
    ohioispine said:
    I am curious at which level of the spine were the leads placed? Also what was done to confirm your low back pain and right hip pain was from the sacroiliac joint. thanks
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