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Trial Failure

Lala329LLala329 Posts: 283
edited 06/11/2012 - 8:45 AM in Spinal Cord Stimulation
Hi guys,

Everyone on this board has been so supportive I just have to start this final SCS thread from me with a huge thank you. I know I had a lot of questions, and you guys were always more than willing to help.

I went for one last attempt to save this trial with some re-programming, and interestingly turning the pulse width up insanely high (800-1000 microseconds) got me great coverage in my low back. The problem is with the pulse that high I have a lot of painful stimulation elsewhere. So, it basically tells us that the fibers we need to hit are really deep within the spinal cord and are unfortunately not accessible to the SCS (the luck of my anatomy). I still have my leads because they sent me home with instructions to play with the pulse, but it is clear to me that this is unfortunately not going to work and I will not be joining the SCS club...

I'm not sure where things will go from here, but my guess is that medications are the only option from here? I saw my doctor briefly and he said he was 99% sure this would work for me before he placed it, so it really is a let down for all of us. I'm very scared for my appointment to pull the leads because I have no idea what is left. I am just so afraid I'll get the "well, I have nothing left to offer you" talk. The last resort has failed, and emotionally it is just really hitting hard because everyone was so confident that this would work. We all wanted it to work so badly, it is just hard to now face this next chapter...



  • As a last resort before you total give up, have you tried turning the stim down until the discomfort eases up? Even if it allows your lower back to hurt just a little it might be benificial. The goal of SCS is to ease 50% of the pain. My Rep told me even with the stim at its lowest setting it still helps some. I know one some days i need to turn mine up and on others i can keep it turned down. I've had my SCS for over 11 months now, and i notice a change over time. Personally, i do not think a week of trial is really enough to get this thing figured out. You body needs to adjust to the change also. Maybe you can see if the Dr will extend the trial for a few more days to see what happens. Please remember part of healing begins in the mind. I also know that SCS is not for everyone. If anything, you can say you gave it a chance.
  • It is not a new chapter, but instead is a new challenge. With your drive and your intellect, you have limitless possibilities for coming up with a solution.

    I was so afraid that my trial would fail and that I would be left without any options. I honestly felt that there were no other options. I have seen that are new developments, new methodologies, new mentalities towards pain management, so I know, were my SCS to ever fail, I'd be okay. Somehow, somewhere I'd find an answer.

    The key is not to give up or give in. If you know in your heart of hearts that there's a solution somewhere, then don't let anyone get in your way! This is just another detour along the road of chronic pain. You'll make it to your destination eventually, just may have a few more twists and turns in the road first.

  • Your Rep beat me to the suggestion. I was going to suggest trying a wider pulse width. One of my programs has a width of 1000. All my other ones are around the 400 range. If it doesn't fit, don't force the issue, you'll just be unhappy later.

    There are other nerve drugs that you can try, such as Neurontin, Lyrica, Cymbalta, Topomax, or Savella. There is always something new coming along, so don't give up hope.

  • Do not give up yet dear....It just may work for you yet.
    No it did not work for me and it does not work for everyone.
    I just had my pain pump implant this past Friday and could not be more pleased with the wonderful results. A pain pump IS the last resort, not the SCS. It is working wonders on my low back and my foot and leg pain!! I have no pain at all when sitting and laying down and only a little pain when walking. An increase in my dosage in a couple of weeks should take care of that pain.
    Recovering from the surgery is rough but I am improving every day.
    There is always hope Lala....Perhaps a pain pump is right for you. I had no fear of this surgery at all and had a wonderful Neurosurgeon to do my implant. One of the best.
    For me this is a life saver and perhaps it could be for you too.
    Best of luck dear. What ever you do....do not give up. Sending you a hug
    Patsy W :H
  • Lala, you may want to have a more indepth discussion with your doctor/rep about the type of leads they're using for your trial, versus the type they would use for your permanent implant.

    I apologize for not having read much lately and being unfamiliar with your whole trial experience, but if you're going with the ANS or Medtronic stimulators, the Medtronic Specify 5-6-5 and the ANS Tripole series leads were designed specifically to better address patients with both low back and leg pain.

    With the paddles in general, you avoid the 360-degree signal disbursement because the electrodes are flat rather than cylindrical. With the paddle all of the stimulation comes out of the front of the paddle and can be directed deeper into the dorsal column, without directing it in all the other directions simultaneously. For some patients, that's a huge drawback, but for those of us with low back pain and leg pain at the same time, it's a major benefit to target those deeper nerve fibers.

    In addition to that, the Specify 5-6-5 and the ANS Tripole series leads in particular have the electrodes arranged in 3 columns on the paddle, instead of having the 2 columns of electrodes side by side. That 3-column arrangement opens up an incredible range of programming options that are simply not available with other types and arrangements of leads.

    If you're getting good coverage in your low back at the expense of your legs, and you're getting good coverage in your legs at the expense of your low back, I think it's definitely worth your while to have more of a discussion with your doctor and rep about the various types of leads before you throw in the towel completely.

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