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Possible signs that a spinal cord stimulator might not help you?

Posted , 2 users are following.

kathy07828
kathy07828

Hi everyone! First, I want to express my admiration to all of you. Despite many being in daily pain levels that make life difficult, I always see positive, optimism from you all. Your sense of compassion for others is ever present, and you are all my heroes. I became involved in his group when my pain dr here in New Jersey, USA suggested that I try the Nevro SCS that has recently come here. His partner has implanted about 30 of them in patients over the past 3 months and reportedly had amazing results. He had very little information to share with me about it so I started digging around on the internet for information and came across this group. From what I've been reading here over the past month, I decided that at this time it's not a good fit for my pain profile, and he now agrees. I gave him information and feedback I had learned from you, which he was eager to hear. He seems to know very little about it, and his practice didn't have plans to follow up with patient studies in which to draw conclusions a few years down the road as to who would Ind successful pain relief with this. Please give me your feedback on some assumptions I've made based on what I've read here. I really need anyone with a positive outcome to cmment as well so that I can draw some valid, balanced conclusions. My friend is preparing for a Nevron from the same practice, and I'd like to share this with her. 1. People who have fibromyalgia don't seem to benefit from a SCS. 2. People who have been diagnosed or suspect they are a Highly Sensitive Person don't respond well to a SCS. 3. People who have some types of arthritis don't seem to respond well to an SCS. 4. The makers of the Nevro claim that it is successful in treating radicular pain, which is pain radiating from a nerve. The nerve is most probably impinged in some way, sending shooting pain down your leg. The makers claim that it will probably not help chronic low back pain, which is from a different source. Can you please agree/disagree with any of these 4 assumptions based on your personal experience with a SCS? Please begin with naming which brand of SCS you've had this experience with as this is very helpful. Thank you! ~kathy

0 likes, 6 replies

6 Replies

  • myc1
    myc1 kathy07828

    Posted

    Hi Kathy,

    I Googled SCS as I had never heard of it until I read your post. It sounds awesome and appears to help reduce pain immediately, though it seems quite new so I guess time will tell. My L4/L5 lumbar vertabrae had twisted and moved forward so it trapped my sciatic nerve and I underwent fusion surgery, which was 100% successful! so I doubt, given the damage, that SCS would have been a viable option but I'd certainly like to hear what others have to say who have experienced SCS. . 

    Be well,

    myc

    • kathy07828
      kathy07828 myc1

      Posted

      Hi my! Spinal Cord Stimulators have actually been around for about 20 years, but each generation of them is improved. In the past the only ones available were low frequency ones, which seem to work well for many. I can't stand the feeling of a TEMS unit, which they feel similar to. The new Nevro unit is high frequency so that vibrations are not felt. Time will tell how these will evolve. The battery is as big as my cell phone and is implanted in your buttocks. Some have complained that it moves, leans on sensitive nerves, and gets too warm which causes them discomfort. I'm really glad that you had success with your fusion!
  • rodney02388
    rodney02388 kathy07828

    Posted

    Hi Kathy I have fibromyalgia chronic back and leg pain,I have had a Boston Dorsal collum stimulator fitted last yr.I live in Australia and I would recommend u see a sugeon that has alot of previous education in this field.Mathew Green was my surgeon he travels the world training others to perform multiple nerve surgeries including brain opps.I'm sure if u look him up on internet he will give u a list of surgeons he knows in USA.This has been around since the seventies,I'm sure u would get relief from this and it means taking much less medication but u have to be prepared to do very little for a month or more no bending lifting hands above the head.I've had alot of surgery and wished I had this done 20 yrs ago.I'm cutting back medication slowley each wk.I hop this helps its not a big opp.Regards Rodney.
    • kathy07828
      kathy07828 rodney02388

      Posted

      Thanks Rodney. My pain management group has no experience in this and isn't even doing follow up evaluations with the patients which I find irresponsible. Thank you for the Dr recommendation. So you have fibro and this surgery didn't trigger waves of fibro pain? When I go for physical therapy and she reseats my hips, I often have my nervous system respond ridiculously from it, even though my body is now in a more normal and functional position. I will warn my friend about the post op instructions too. Her husband has lung cancer and she is doing much each day to care for him, including driving him to appointments. I really appreciate your knowledge on this. ~kathy
  • rodney02388
    rodney02388 kathy07828

    Posted

    A huge part of fibro is that most people that have it have worked shift work long hard hours at hm caring for families etc,we seem to be able to push ourselves beyond what we should do then when we crash there isnt a part of our body that doesnt hurt.I worked for myself and kept trying to for too long and now bits are falling off he he,laughing and making fun of our issues help alot.There is a drug called Lyrica it helps with nerve pain and sleep,i hade side effects that i put weight on which i didnt need with a bad back.I wish you and your friend the very best bye.
    • kathy07828
      kathy07828 rodney02388

      Posted

      G'day Rodney! I was put on Lyrica twice, and both times became so spaced out that I could only sit on the couch for the next 20 hours after taking it and wait for the universe to stop spinning around me. I couldn't even watch TV, and forget trying to get up and walk in to another room! Then the dr gave me Neurontin to try to help. I started at 10mg and thought I felt better for a few days, then stopped, so the dr increased it to 20mg. Same thing. We eventually got up to a 40 mg dose. After a few days I noticed that the toes on my foot affected by the nerve damage the surgeon gave me started twitching on their own when I was sitting in my recliner or laying in bed. I couldn't make them stop, and it was freaking out my kids when we were watching TV together. I backed the dosage down gradually. The drug wasn't really helping anyway. My toes stopped dancing on their own thank goodness, but at 10mg, the side of my face went numb and had pins and needles. I thought I was having a stroke! That was enough for me, so I stopped taking it. When my poor mother had been given it to try, she was so disoriented that when the portable phone rang, she knew enough to pick it up and hold it to her ear, but didn't know which end to talk into, forget to push the 'speak' button, and just kept saying, "Hello", into the back of it . (I made the medical decision to get her off the darn stuff too.) Unfortunately, she and I have weird side effects from many drugs we've been given.

      Thanks for the info and be well,

      ~kathy

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