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Looking for help - scs stories

LumbarLynneLLumbarLynne Posts: 67
edited 06/11/2012 - 7:44 AM in Spinal Cord Stimulation
I was dealing with my back pain through chiropractic and massage when I was attacked by a dog. The fall broke my L1 and sent my L5/S1 pain over the top. Doctor did a fusion one year ago. I have seen 2 surgeons and neither one cares to really talk to me, to appreciate my pain, or to look at all the pain areas in my back. I saw a surgeon today and was so frustrated as he didn't even want to talk about my mid back pain and wanted to cut me again because he feels my fusion must have failed. I have been reading about the SCS and am going to schedule an appointment with a new doctor in hope of finding someone that will treat the whole patient. I am so tired of the pain and all the narcotics I am on. For those who have gone the route of scs, how many success stories? Failures? How does a doctor decide if this is the right treatment for you? Any other thoughts on my situation are welcome.

L5/S1 fusion 1 year ago with increasing pain
L1 fracture with T12 endplate deterioration beginning
Pain mid-back
Pain in low back
Extreme pain in right side of lower back
Some pain down my right leg
Doctor thinks fusion should be solid and showing more bone than it is
Will do CT to confirm if I am willing to go back under the knife
On oxycontin daily
Can't exercise because of pain and am overweight

Thanks,
Lynne
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Comments

  • I have a stimulator for bi-lateral leg pain. I have some discomfort in my back but its minor in the grand scheme of things. My suggestion to you would be, make sure the fusion is solid and complete. I would not consider an SCS if I had any instability in my back based on my research to date. Most SCS implants will fail because of mechanical problems with the back. A stimulator works well on nerve pain but is limited on anything else.

    Let me know if you have any other questions. You should check out the Spinal Cord Stimulation topic area.

    Dave
  • I'm "LumbarRae" :)

    I have bilateral leg BURNING neuropathy pain.
    The SCS does wonders for that. And to my amazement, because of how the dual leads were placed in my lumbar, I was able to get programs that actually DO cover lower back pain. But the back pain I'm talking about probably isn't what yours is.

    Like Dave says, if it is 'mechanical' in nature then I wouldn't hold my breath hoping for relief from SCS, but HEY it wouldn't hurt to maybe go for the trial and give it a run.
    The back pain I get is muscle pain in lower back.

    Getting programmed to cover that area came as an 'extra bonus' for me because I was only focusing on the horrible burning leg pain and didn't even consider asking for back pain coverage. But my Dr has done so many of these, he placed the leads to get this extra coverage because he says a lot of his patients with leg issues ask if the lower back can be covered as well.
    I was very impressed by that.

    I'm sorry you aren't getting any quality one on one care from Drs. I bet tho, if you show interest in wanting to try the SCS, they'll be all over you like flies on .... horse manure. Drs LOVE selling these things. Also, it may help to indicate to the Dr that you seriously want to get off the opioids, then they may take a closer look at trying to 'fix' you.
    I dunno tho, I know nothing about back surgeries. But the SCS definately has a good success rate with neuropathy pain.

    Best Wishes
    Rae
  • The other comments are correct that a SCS is not indicated for mechanical type low back pain, so if there is instability from a failed fusion then it is unlikely a SCS would work long-term. I actually had a thread about the difference in using a SCS for mechanical vs. neuropathic pain and got some really informative answers so you might check that out: http://www.spine-health.com/forum/spinal-cord-stimulation/scs-mechanical-versus-neuropathic-pain

    But, that being said, it *can* be used for axial low back pain. There is a lot of confusion about this because the research shows SCS are most successful for treating neuropathic leg pain; but, the current research also shows about 50% of people get good relief for axial low back pain. My doctor told me they are getting better and better at figuring out ways to cover low back pain, but the only way to know whether your particular pain problem and anatomy will work to get low back coverage is to do a trial.

    Also, my doctor told me it is extremely difficult to cover mid-back pain with a stimulator, so if you are needing both your mid back and low back to be covered I would definitely talk to your doctor about how realistic that is.

    The mantra I have always heard when deciding when to go to the last resort measure of a SCS is that you have to first fix what can be fixed surgically, then give the SCS a try. I think it's important to keep the distinction that failed back surgery syndrome is not the same thing as a failed fusion, so when you're researching SCS you may want to keep that in mind. It sounds like a CT is your next step in order to move forward with either a revision surgery or to get started on the SCS process? I would think you and your doctor would need that to assess the status of your fusion to be able to decide if a SCS could be an appropriate option.

    I don't have a SCS, but I am about to do the trial so I don't have any personal experience with a SCS yet...
  • SCS should only be inplanted if there is nothing else that can be done. Since I had mine inplanted.I got 1/2 of my life back. With little pain and I am only 6 week out.


    Jim
  • Lynne

    Just wanted to say don't give up on finding a doc that will look at the patient as whole. Hang in there!!
  • I have nerve impingement pain in both legs (following TKRs). Yesterday (6/13/11) I began the trial for an SCS. I am not getting the "screamer pains" as was a few days ago, so perhaps it will work for me. The only thing bothering me now with the trial is trying to get the strength right on my STIM. If too high, I seem to walk into "fields of strong currents" high enough to make me back away from some household things, ie: computer, refrigerator, microwave, etc. By lowering the STIM to about 1.5 to 1.6 or so, this doesn't happen. Anyone else had this sensation?
  • I am only on day 2 of my SCS trial, but haven't noticed that. I am holding my laptop on my lap right now. I do notice stronger currents as I move around, rolling over, walking, sitting, etc. but nothing that is bothersome. I have my stim set usually in the 3.2 area for the left side and the 4.2 in the right side. I do adjust them up and down during the day and leave it on at night. I slept the best I have in years last night with no sleeping aids at all! I hope your SCS trial went well and you have gotten your permanent one now.

    Jan
  • One of the problems with the trial is the leads are not anchored in real well (one or two stitches and tape)and there is no scar tissue holding them in place. As you move, the leads move closer and further from your spinal cord, hence the change in stimulation. Based on my research, those that have thoracic lead placement have less positional stimulation post permanent implant than those (myself included) with upper lumbar lead placement.

    The amplitude number goes hand in hand with the pulse width and rate. The wider the pulse width, the deeper the signal and the lower the amplitude that is needed.

    I run very large pulse widths with very low amplitudes, less than 1 volt for most programs. I do have a couple of programs greater than 2 volts, but they are usually very uncomfortable if I change positions without taking precautions.

    Jan, I'm glad that your trial is going so well. How far down does your stimulation go with the mid thoracic lead placement?

    Dave
  • Thanks Dave!
    Mine works clear down thru my toes, which were giving me a lot of problems. I do have the bandwidth turned up as high as I can without having it bother my ribs. It does seem to really help, but I still need the amplitude turned up fairly high. I don't think I am on strong enough pain meds, but when I take more I am so groggy all the time that I can't handle it. So this has been a real help so far. I do know that the leads are moving some, and am trying to be very careful. But I have been able to leave the settings the same for about 15 or 16 hours right now during sleeping and awake, so that makes me happy. So far I have had no problem with it shocking me so much that it bothers me at all. Now I am hoping I can keep my insurance up long enough to get the permanent one. I am going to start begging the surgeon to hurry it up.

    Jan
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