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SCS pain coverage issues

AnonymousUserAAnonymousUser Posts: 49,321
edited 06/11/2012 - 8:27 AM in Pain Management
Hello,
I am having some issues with my perm scs. I have not found anything really similar on the forums, so just wanted to see if any one else can relate.
I have the Medtronic Restore Ultra, placed at T11-12 for lower back pain. I have had it since 7/10/08, I get the relief in the legs great for the leg pain, but it doesnt go into my back at all, so all of the lower back pain is still there. Dr says that SCS is more for leg pain and not really for the back pain. I guess I missed that information before I decided to get the scs. I have also found that, although it takes care of the leg pain, I think it kind of aggrivates the lower back pain, like right in the lumbar area. Has anyone experienced this? I have had 2 surgeries since the implant to adjust the batter pack, so I have alot invested in the scs and do not want to give up.
Any advise or experience to share would be greatly appreciated.
Thank you!!!
Jeni
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1345

Comments

  • I have only tried an SCS trial which ended abruptly, so I don't have this experience. However I always wondered the same thing. What if the back and leg pain are equal? I don't know if there is a particular model that is designed to cover both areas, but I'm sure someone here knows about it. I hope there's is a solution for you and that you get to keep the SCS.
  • I have an SCS and like you, I have great coverage in my legs but not so much in the back. I don't remember my doc telling me that bit of information either. I feel the tingling from half way up my ribs to the bottom of my feet. What I have discovered is that the scs helps my back pain more than I give it credit for. When I have it turned down pretty low, I notice that my back hurts more. It's not great, but it does help a bit.
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  • Doctors aren't real positive on all the ways an SCS helps an individual. That's one of the big reasons for doing a trial first.

    Have you spoken to your rep about this? One thing that I have found with mine, is that depending on how the leads are configured to fire, it can cause pain in my neck and shoulders while at the same time working on the radicular pain.

    Have you experimented with running your SCS at a lower setting to see if it is causing the pain? Do you have the "targetmystim" capability activated with your programmer? If so, then possibly decreasing the pulse width will help. I thought I was developing a throat problem a few months ago and found out that it was my SCS creating it. I reduced the pulse width and it took the problem out of my throat.

    I highly recommend talking to your rep about this, to see if there's anyway to reconfigure your SCS programming to keep it from aggravating your lower back pain.

    It did take a bit for my rep to believe me when I told him that the way the leads were configured, caused pain. After a little convincing he adjusted the firing pattern and things were rocking and rolling great.

    "C"
  • I don't want to steal this thread, but this info is invaluable to me. I go in on Wednesday to do the psych eval for a SCS. Having info like this now means I won't be so lost should I encounter some issues should I make it thru to the permanent model. I am mostly afraid I will be turned down, seconded by the fear that my pain clinic will screw things up and I will have to fight to get to the trial.
    Then I worry that it will not work.
    Is it any wonder people think I'm grouchy and detached? I have enough issues with the pain, fighting to get treatment only adds to the stress!

    Please keep the info coming!
    Thank you!
  • Have gotten reprogrammed 3 or 4 times and I won't hesitate to call again if I feel something is off. I love my programmer and she assured me that is her job and to call her anytime, so I do (and will! lol).

    I have the ANS/St. Jude Eon Mini and it's been 3 weeks today. I'm still waiting for the leads to scar down.

    I had it turned quite high at first and lately, due to some pretty severe undiagnosed nausea, I have it turned really low. I can't even feel it unless I am laying flat on my back. But it is covering the nerve pain fairly well!! I turn it off every now and then to remind myself just how much it is helping. (I have other things going on with me, like nausea and hives since I left the hospital.)

    I have had some back pain, which is uncommon for me, but it is because I'm doing so much more than I have in 3 years!! I know I have some conditioning to be "normal" again. I don't find that the SCS covers my back pain at all, and I have 2 leads with 16 nodes, and that is supposed to increase the possibility of back pain coverage. My back pain, though, is more something I will wake up with and it is gone in an hour once I get moving.

    I was lucky in that 2 neurosurgeons explained to me that the SCS isn't the best for back pain and in fact, had I not had horrible radiating nerve pain, neither doc would have considered the SCS for me. But some people do report getting back pain relief. My current doc had told me if I had more back pain with the nerve pain, he would have implanted the Advanced Bionics brand, as he has had more success with that covering back pain.

    My leads are apparently as low as they can go before they will be out of the epidural space, so I'm not sure what that means? lol But that is where it feels 'right' to get the buzzing right where I want it.

    When I have moments of time when my nerve pain breaks through, I try to readjust my position knowing my leads haven't scarred down yet.

    Being able to realize and keep reminding myself that I can get in that car and go to the mall or to a restaurant and that if my nerve flares, I can turn the SCS up higher if needed. It seems like it shouldn't be that hard to remember!!

    Jeni, honestly, I would call my programmer and talk to him/her and get some new programs. There are just so many options, so many combinations of nodes they can turn on - I wonder if you just don't have the right combination yet?

    Good luck!!

    Cheri
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  • I agree with maybe reprogramming, have you had frequent tweaks I call them? Have they tried to move the lead up alittle to see if they could find the back? I'm sure when they put it in they moved all the way down and found the best spot for you but just a thought. Also I had a different programmer after the perm placement and asked for the guy I had for the trial and its a huge difference.

    Cheri mentioned Advanced Bionics and thats what I have, the Precision Plus model which is designed to cover multiple areas even at 1 time. I have debilitating leg pain which was my go ahead to get it but also back pain so my pain mgmt doc went w/this one. He uses another brand too depending on the patient he said. I didn't realize how much my back hurt as I guess my brain was so preoccupied w/my leg.

    I go in for a revision this Fri to move the paddle lower(mine is too high and I'm getting an organ beating) so hopefully it will be even better after that. I am reminded quickly when it's off how bad it is in a hurry. I hope Fri we'll get it right and I can start working on those back muscles that aren't used to doing much like Cheri said :)The doc said if we go very much lower I could lose my back as we are going in to try and find more of my leg and the coverage I'm getting now is from the very bottom of the paddle so there is lots of room and hopefully we'll get more contacts that can be used....it's a long story! "C" & Cheri & the other Charry were so supportive after I had mine done too high, so thanks again guys!!

    Jeni we're all here for you too, I wouldn't give up either ever. I'm not giving mine up for anything! It has allowed me to lay normal on my side and what a difference overall so keep working with it and you'll find where you want to be I know it's frustrating believe me but I think worth it no matter what.

    Keep the faith and take care
  • I agree with looking at your programming and trying to tweak it a bit.

    I have the Restore Ultra with a paddle lead at T7/T8 and the program group I use most often covers everything from my bra line to the bottoms of my feet, with no problems.

    Using TargetMyStim, I can make the 4th program in that group go into my shoulders and down my arms too, and I don't even have pain in those areas. :))(
  • The SCS is for nerve pain. The PAIN PUMP is for what is considered "Mechanical Back Pain", which basically means the pain is in the bone itself, not so much the muscles, ligaments or nerves that come from the back.

    If what you are having is "mechanical" back pain, the SCS may not address that. If the pain in your legs is better, than the SCS is doing what it is supposed to be doing.

    I had a pinched nerve (due to herniation) a few years ago. Once I had surgery to get that disc off the nerve, I felt better immediately. As soon as I woke up in Recovery - that's how quickly I felt the difference.

    HOWEVER, I still have other back issues. The surgery I had was not supposed to fix that - just the nerve impingement. So, the surgery is considered a success in that there is no more nerve impingement - even t hough I still have back pain... Problem was, I waited too long to have the surgery (thinking it'd get better) and have permanent nerve damage as a result of my stubbornness (or ignorance to how these things actually work). But then again, I am no doctor, nor do I have an SCS so really should not be commenting at all. But, I thought this information could be helpful for someone else if not for you.... ?

    I hope this helps? If not, I'm sorry. But either way, I do hope you get some relief! and SOON!

    Jeaux
  • I know u posted about this a while back I am about to under go the psych eval before the trial period for the SCS.. One of the things I did ask my PM doc was what should I expect the SCS to help control. He told me it was really meant to help control the leg pain, and not so much the daily back pain. I know it seems like a large step for some pain relief but I'm willing to try just about anything, even if it can help me stand a little longer and maybe be able to do the dishes I'm all for it... But I hope my little bit of info helps.. u might have already figured this out by now... but as far as I know it's tended to help reduce the leg pain more than anything..
  • OK, so I've had two SCS trials at two different hospitals two different brands at two different times in my life. First doc with Medtronic told me it would help back pain great! Wrong. Second doc who used Boston Scientific told me it for nerve pain and any benefit I get for back was just bonus.

    I just recently did the Boston Scientifc trial and get perm in August. I like the doc and the rep spent so much time with me. Even though I only had the trial, I had a "duh" moment and figured something out. My back hurt so bad during the trial and immediately after. Well, it hurts bad at first from the insertion, I know, but my "duh" moment: I realized that for so long my legs had been my limiting factor and since they felt better, I actually was doing more and flaring up my back. No wonder my back hurt so much later! My nerve pain had always stopped my from doing much, so my back wasn't used to being the bad guy so much. When I got nerve help, I crammed in all kinds of activities because my legs felt so much better and whammo my back got worse.

    Just my two cents worth after trial. My rep is very friendly and kept reminding me that once perm is in, he would work with me to try and tweak the thing as much as possible and may take several tweakings. Realistically, I do expect to still be on some meds for my back but hopefully a lot less.

    Good luck, please keep posting as I am very interested in your experience!!!!
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