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2 months 1 week after acquiring Neural (spinal) Stimulator

What kind of relief do others get from their stimulator? Does it touch your pain? Is just a distraction? Does it feel like a waste of a surgery?

To me, all I feel is that I have a TENS unit in me. My legs tingle from it. I feel the stimulation all the way from my abdomen down to my knees depending on the settings but it seems that the dull aching pain that feels like it resides in my pelvis is untouched. I have had 2 "fine-tuning" sessions to adjust my stimulation areas but I have really no significant pain relief. Like I said, I feel no different than having a TENS unit on. 

Originally I was told that it was a way to focus a treatment on my nerves so that my brain doesn't get the pain signal. To me it sounded like they were saying it was targeted therapy that should give me some relief. But I am not getting that from it.

I have nerve damage in the degree that my nerves are scarred. And from 2 separate MRI's 6 months apart, before having my Stimulator implanted, the scarring had spread or grown.

I can say that just before my surgery, I was in a desperate state with my pain. I was very down and the pain was so unrelenting. After my surgery, I didn't feel as terrible but truthfully, I didn't feel better. Just not as terrible. Its so difficult to explain. Its like comparing a broken pinky finger to a broken wrist. A broken pinky finger isn't a better pain, its just a different pain and if you rely on your hands to do everything, it doesn't make your life any easier. Does that make sense?

So I don't feel like I would be better off dead, but I don't feel like I have any chance of having a better life with my current levels of pain.

Any suggestions??
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Comments

  • jimandjrjimandjr Dallas TXPosts: 688
    Every doc, PA, and sales rep told me the SCS would not cure me. In the back of my mind, I was thinking it would give me 90% relief. Of course, it has not. I am almost 3 months post op. I texted the Nuvectra rep last night. We will meet next week and he will reprogram my SCS. I use the high frequency setting 90% of the time. For the most part, I can't tell it's on. The SCS is just another tool to help me deal with my totally wrecked spine. My spine is wrecked from top to bottom. The SCS has allowed me to go to movies, restaurants, and the grocery store and not hurt real real bad. Also, I can go have drinks with friends for a couple of hours and not pay for that later. Before the SCS, I would take so many meds when I got home and really hurt the next day or two. Did it heal me? No. Has it helped? No question. GLTU
  • armelindarmelind South TexasPosts: 121
    I am still on my same pain meds dosage. I dont go anywhere unless I have to. I dont go to movies. I dont go out with friends. My back isnt wrecked from top to bottom, I just have nerves that tell me it is.

    Like I said, I have had 2 reprogramming sessions to get it set... and no matter what they did, its like the area where my pain is located has a dead zone where the machine doesnt touch. 

    I use the hi freq settings mostly too and dont feel it... but I have to alternate because I can feel my body getting worn down if its on one setting too long.
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  • jimandjrjimandjr Dallas TXPosts: 688
    It sounds like we have the same SCS experience. I wish the leads could run all up and down my spine but no. Alternating programs is so important to me too. This is my first reprogramming session since I got my stitches out in Dec. I also take the same meds and dosage. I suspect all this is pretty normal for all SCS installs. 
  • arackaarack LondonPosts: 1
    armelind, sorry to hear about your ongoing pain. Do you mind sharing which SCS brand you have implanted?
  • armelindarmelind South TexasPosts: 121
    Boston Dynamics. I dont think the brand is the issue. I think the issue lies in where my damaged nerves are located. It doesnt seem they are able to focus the stimulation in the right area. I mostly get (I cant say it is relief) from the distraction of the electric pulses & waveforms. But nothing yet has focused directly where my pain is.
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  • jimandjrjimandjr Dallas TXPosts: 688
    Arm, sorry the SCS does not concentrate on your main area of pain. I got a short lecture before my SCS install on what I should tell them in the ER during the install. I do not remember answering questions. Doc said I tried to get off the table a couple of times. I do remember the nurse telling me not to do something. I was hoping I was not grabbing any cute nurses. lol. Anyway, I wonder if your leads may not be in the correct location to deal with your main pain. Have you talked to your surgeon about this? 
  • armelindarmelind South TexasPosts: 121
    They said they asked me about the wires/leads/whatever (I cant remember what they are called), also i have had x-rays and other things to confirm the placement. They said one moved slightly but they can compensate for it in the programming since the leads are so long. 

    I really cant say that they are or arent placed correctly in my opinion. My pain is in such a huge generalized place....when I am aware, its hard for me to define the actual point of pain. I couldnt imagine the crazy answers they would have gotten from me while I am drugged up.
  • jimandjrjimandjr Dallas TXPosts: 688
    I have been turning up the vibration settings where almost my whole body is shaking lately. It does help me. 
  • jimandjrjimandjr Dallas TXPosts: 688
    My Algovita has high frequency settings and tonic settings. The HF settings tend to work the best on my pain. However, sometimes I just need a massage (tonic). One thing I have learned is I am always changing settings all throughout the day. My remote is a fob on my keychain. My keychain never leaves my side. 
  • So sorry you aren't getting relief!, This sounds,like the first spinal stim trial I had,about 5 years,ago. It just sends,vibrations but doesn't help the pain. I am waiting on a new,stim called Nevro. It's supposed to be better and not send those,annoying vibrations.  Has,anyone heard of this?
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