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SCS and foot pain

stockbrokersstockbroker Posts: 464
edited 06/11/2012 - 8:35 AM in Pain Management
Has anyone had success with a spinal cord stimulator relieving their foot pain? I know several of you have said that you could feel the stimulation all the way down into your feet but is there anyone who's sciatica continued into their feet, making walking difficult and the stimulator was programmed to actually relieve the foot pain and make walking bearable? My foot pain developed AFTER my fusion, probably the result of scar tissue. The ANS rep told me it was very, very difficult to deal with foot pain. I can get stimulation in my feet but it doesn't help the pain. The stimulator does, however, help the pain in my legs a great deal and I dig the sensation it provides. I only wish I could walk. (Does this sound like a familiar story?)
Greetings to Petite39, Julie and Patsy. Susan


  • Not the same as you. However,I developed pain in my hand after a fusion surgery. I get coverage of my arm and my hand. I have had tons of reps mess with my programs over the years and I think it was almost by chance that I ended up with very strong hand coverage in this last year.I would think that the right programmer could help you with coverage of your foot. I hope so!!

  • Finding the right programmer. Since you have coverage maybe there is a good chance the exact correct sensation had not been created for you yet to block the pain signals. try again, and again...

    I find that my shoulder pain verses my stimulator has to be a carefully balanced situation. To much stimulation is as bad as the pain. I have to get the level just right so it knocks the pain down and does not interfere with my being able to ignore it and get on with "things".

    It sounds possible that your level for your legs is good, but your feet need something different, so programming may find that right combo yet.
  • I clearly remember the pained expression on my rep's face at my first real programming visit, when I said "you can cover my feet, right...?"

    At my last major programming tweak (over a year ago), my regular rep and the rep that did my trial happened to be in the office at the same time and their 2 brains hooked together finally managed to cover the pain in my feet completely.

    Feet are definitely a challenge for the reps and a patience tester for us! 8}

  • I'm heading "out west" tomorrow to see the pain psychologist and think I'm also going to see one of the ANS reps. I'll let you know how it goes. It sure would be great to walk again 'cause I'm turning into a real FATSO. BW, I'm very impressed with your recent posts. Were you an engineer in a previous life?
  • Haven't been on in awhile but been wondering how things were going with you. After having the second peripheral nerve surgery I have gained more feeling back and function. I am currently in water PT and it is the best thing that has happened to me in a long time. Things like jumping or hopping that I couldn't remember how to do, the PT is re-teaching me how to do in the water. I still have the pain and numbing (but not quite as much as before this last surgery). I gained feeling in my big toe back, so I have balance back. Now I wait and continue to work on individual muscles to gain back my strength and wasted muscles.
    I hope that you can get help with the SCS. It was good to hear someone had success with their foot. All I can say is I know more than most people what you are going through and it really stinks. Keep the fight up for help and it will come.
  • I finally saw the ANS rep. (I cancelled my appt. the previous week due to this pain flare that most of us seem to be dealing with.) Whereas a month ago, I had never heard the term "impedance" I now have heard it one too many times. Brothers had introduced an entire thread (pretty much) to this concept and now my programmer tells me that due to scar tissue formation, he is running into so much resistance (impedance) that he cannot a. increase the degree of stimulation I feel or b. get the stimulation to cover the pain in my feet. He tells me (as he is trying to accomplish one or the other of these objectives) that he is experiencing an UNUSUAL amount of impedance and he is not going to be able to help me. Separately, he told me that if I had wanted to cover my feet, the leads likely would have been placed lower. He told me that my leads are around T9 or T10. He read from his notes: "lower back pain...." I stopped him right there. FRUSTRATED. Throughout the course of my treatment, that is, during these ten long years, all of my medical records, every single, solitary note lists LBP (low back pain) and at every single appointment I would rant, "I don't have back pain. The pain is in my legs." I was so pissed. You know guys, once something gets in your medical records, it is virtual impossible to get it out. (Someone at my PCP's office mistakenly sent a prescription to the wrong pharmacy and now my prescriptions keep going there even though I have called and called to tell them my script should never have gone there to begin with.) Anyway, it doesn't look likely that I am going to get coverage for my feet. Major bummer in so far as my right foot has really been giving me "SAVAGE" pain lately. At the same time, this particular programmer, who I asked to allow me greater stimulation on all my existing settings really goofed up those settings so I am going to get together with the other programmer to undo what this guy did and maybe she will have better news for me. Its kind of interesting though, how a new word or concept is introduced to you and, suddenly, the word or concept reenters your life within the next week. I asked my programmer if I would have programmed my feet or greater stimulation into my settings three months ago, i.e. before the scar tissue formed, if I would have been able to have "dodged the bullet". He explained, "no" I would have had the desired coverage at the outset and then it would have stopped working for me as the scar tissue grew. Drats. Susan.
  • Susan, I am so sorry that the SCS stimulation is not controlling your foot pain. Patsy had the same problem. Others, like Bionic Woman, have finally gotten some foot pain relief through fine tuning of the programs.

    First, let me explain to readers who have not seen my thread, I am a prospective SCS patient; I do not have an implanted SCS like Susan.

    I am not a medical doctor. I have no training in anatomy or physiology. The more read about spinal cord stimulation, the more I realize that I do not understand how the spinal cord transmits pain signals to the brain. I do not know which to believe among the five theories I have read about how spinal cord stimulation works, when it does. I just don't believe the gate theory.

    Nevertheless, I feel compelled to try to respond to Susan's post.

    I think I read somewhere that Susan has a St. Jude ANS EON Mini IPG as well as paddle leads. The EON Mini is a single source constant current device. My local St. Jude representative told me that the EON Mini has memory to store up to 24 programs, and each program can have up to 8 mini-programs. The mini-programs are supposed to be able to control various parts of the leg.

    I am sorry the St. Jude rep messed up your program. You are not the only one. Others have had that happen.

    It seems to me a patient should be permitted to ask a manufacturer's representative to create a completely different program, for example to use when foot pain is the dominant complaint but also some pain relief is needed in the inner knee and thigh. Can we come to an agreement that we don't let a new rep touch an old program that has been mostly satisfactory in the past? You want to be able to use your old program if the new program does not work for you, and the EON or EON mini has enough memory to allow that.

    Professional engineers who are responsible for real-time software would never allow a programmer to change a working program in the real-time operating environment. The programmer has to create a (supposedly) improved program in a separate memory, test it, and only run it in the real-time operating environment when tests prove it works well. We always keep the old program and an ability to back up to using the old program if there turns out to be a defect in the new program. What is more important than a real-time program running as an operating system inside your body, controlling whether you feel pain? I think the programs in your IPG are more important than the real-time operating systems in a Cisco router or in your car. So may I suggest that as a patient community we insist that manufacturers' reps create new programs instead of messing up something that has been mostly satisfactory? Suppose you have five programs. Ask your rep to create a sixth. How many people already have 24 programs and have no more memory for another program? Ask for another program! It may take more of the rep's time, but it is your life!

    I was going to write about impedance, but this post is too long already. I will post on that topic separately (as a layman, of course).
  • I had no idea this programmer was going to actually CHANGE my programs. That being said, the old programs do exist in some sort of cyber-file and will be restored next week by the other programmer who I think is the more capable of the two. I'm still hoping she'll be able to get some more stimulation into my foot and I certainly plan on quizzing her about my circumstances. A revision was suggested but I don't understand how that would help a scar tissue situation. Actually, the ANS guy posed more questions than he answered. I'll be happy to talk to this other person. Susan.
  • Susan, did this rep run any diagnostics on your SCS or did he just try to program you for coverage of your feet and fail?

    Unusually high impedance levels can come from scar tissue, but they can also indicate a technical problem with the leads or IPG. I would pursue that a bit further with the next programmer and your doctor, just to make you are definitely dealing with scar tissue versus a problem with the unit itself.

    Also.. keep the hope alive, as far as that part about not being able to get coverage because your paddle is too high at T9/10. My paddle is at T7/8. ;)
  • "A", the programmer I saw on Wednesday made a number of vague comments regarding my situation though none were as telling as the expression of perplexion that was showing on his face. BTW, I last had my unit adjusted in June. I had it implanted in May. He said something about "maybe a lead has moved"; "maybe I should talk to the surgeon" but mostly he was really impressed by the amount of resistance he was encountering. I told him, quite emphatically, that I would be willing to undergo a revision if that were necessary===that I di. dn't find the surgery to be very difficult (esp. compared to the trial and then we yukked about that). All this to say, I am definitely on the SCS bandwagon. I sure didn't see how I could talk to the doctor when I didn't know what, exactly, it was, I was going to talk to him about. That is, I thought, the rep should talk to him. I will be happy to meet with the other rep, "M". I'm sure she will answer my questions more completely and then I will let you know. I will be seeing her at the beginning of next week. Ican't wait to get my old programs back. On my ANS remote, I turn on the program and then I click the right button to turn it up higher. I thought the rep could simply, allow me to turn that same program higher. Each click is represented by a bar on my remote and I thought i could get more bars. Apparently, I didn't communicate this correctly. But, no biggie. I will get my old programs back next week PLUS, I hope, a pain flare program. Susan.
  • I do hope the other rep is more helpful. While I had begged for the paddle lead, Dr. Feler believed percutaneous was my best bet, and I wonder if that is because I had to have it pulled so low?? I have no idea, truly, but my percutaneous leads are at L1-L2, which from what I understand, is extremely low and almost unheard of.

    This summer, I met with my rep to see if I could get some new programs to try to hit the new back pain, and she said "No way", with as low as my leads are. If the back pain were to get unbearable, she would recommend a 2nd unit to be placed higher to cover the back pain.

    She also wonders if I am experiencing a combination of traditional SCS gate theory and field stim, with as low as my leads are.

    I don't know, but have wonderful coverage. And my rep always leaves my existing programs alone and makes a new one. That was driving me crazy, with so many, but now I realize I am one lucky girl! lol I will definitely keep that in mind, re: don't delete any programs at all. lol

    Good luck and keep us posted!

  • Yep, stockbroker, I have acceptable relief in my foot(not total, but acceptable.) I was told up front that nothing would help my back. Doc used a Boston Scientific model and the challenge was to get my feet as well as butt/sciatic pain. My coverage goes almost to the top of my butt crack for nerve pain but they could not go higher without chancing not getting my foot. To me, scs was pointless without getting my foot.

    Reps worked a lot with me in trial. Still waiting for perm to settle down before more tweaking.
  • Question: Could you try to explain exactly what you mean by getting "acceptable" relief in your feet? My right foot hurts so much, a stabbing, burning pain, occasionally being jabbed on the inside of my arch with a hot poker. When I walk, it feels exactly how it felt when I had a stress fracture in one of my metatarsals, that is, broken. I can get stimulation to that foot and my stim will reduce the discomfort when I am sitting on the couch or lying in bed. What I am hoping for, what I would consider "acceptable" relief would be something that would allow me to walk again. I have great relief in my legs. I was hoping for this. I thought to myself, "just get the leg pain under control and you'll be able to start walking again and get youself in shape." I developed the foot pain after the fusion surgery and its been getting progressively worse. My P.T. says my foot is swollen in a couple of areas. Susan.
  • Acceptable relief is relief that keeps me from wanting to cut off my foot/feet/legs. That's my definition but I think acceptable varies from person to person. If I do more stuff, I have to jackhammer the amps up to almost a painful level to take care of the railroad tie spike being pounded into my big toe or the bugs on my foot or the water dripping on it or the acid on it or the rugburn(these are all my descriptions of nerve pain/RSD.) I really haven't tried shoes much, but before I couldn't really wear anything but sandles or occasionally socks which would make things worse. I would sometimes walk on the side of my foot.

    Even when I feel "acceptable" relief, I can tell there is something there, but the purring/buzzing lets me tune it out mostly. It's hard right now because it is so new and is so positional, can't wait till it is more stable so I can get the rep to really work with it. The rep really works hard with me.

    During my trial, my leads were at T12-L1 and L1-L2(I think.) They moved up one level for the perm trying to get more butt coverage but without losing the foot coverage since that is my #1 spot. The rep asked me to prioritize pain areas.

    My foot pain worsened after fusion and leg pain came back after fusion due to BMP growing on my nerve roots. After many salvage operations to remove the BMP and hardware and necrotic tissue, the SCS is now my last resort since nothing more surgically can be done. I honestly would have cut my foot off or leg entire if the SCS had not worked. So my definition of acceptable is more than 50% pain relief I guess???
  • Great news! =D> So many people with SCS have said it is important to have a good rep program your IPG, and you have proved it. I am so happy for you! :)

  • Ah-h-h-h. That feels good. I have my programs back. I had to go all weekend walking around the street fair with the mess "A" created that felt like little finishing nails being pummelled into my skin. So, "M" re-set my programs to original electrode and amplitude settings. Then, she increased the amplitude settings to increase intensity as far as impedance would allow. Lastly, she ran a diagnostic test that showed no problems with my leads or IPG, but 1000+ impedence on 4 contacts. She told me this impedence was most definitely the result of scar tissue formation (which is expected and wanted) and that it is not so severe as to prevent getting stimulation where I want it. I also asked if my leads had been placed too high to cover my foot pain (in an effort to cover this mythical back pain). She told me, "no". I have very sharp, stabbing pains right under my hip bones and this area absolutely needed to be covered. The lead placement should provide me with coverage from hips to toes. I don't even know if my foot coverage is better. I'm just so glad to have my old programs back. And then some. Susan p.s Both my PM doc and my PT think I have more going on in that foot than L5 nerve damage. MY PT found some swelling and other stuff that makes him thinks I have arthritis. This would also explain why I can feel the stimulation in my foot but it isn't relieving the pain. Well, lets see how tomorrow goes.
  • He no longer thinks I have arthritis is my foot. The swelling is gone. Everything is moving well. But he spent a half an hour working on it and today I'm walking pretty darn well. Humph. It could be something in addition to the L5 pain which would explain why the SCS is of only limited benefit. You gotta love those PTs. I think they understand how our bones, soft tissue work better than MDs. They've been a God-send to me. Susan
  • So happy you have your programs back!!
    You well know the problems I have with my stimulator. I have good coverage in my feet, plenty of stimulation but does it help my pain?NO...NO....NO it does not. My foot pain was my main concern. My feet throb and pound with pain.
    I have worked with the rep twice and nothing works for me.
    The constant buzzing, tingling, pulsing on top of the throbbing pain is just more than I can stand.
    My pain Doc told me if he had known my pain was as bad as it was he would never have implanted the stimulator but would have referred me for a pain pump instead!! HUH??? Naturally he tells me this AFTER my implant!! He also said he did not know I was on such high doses of pain meds. He knew Susan...he knew.
    Susan...It has been just crazy.
    My feet still throb and pound. My legs feel like flimsy sticks that will break any minute. I have to walk on this pain!!
    I am so happy things are better for you now. Way to go girl!! =D>
    I see my pain Doc next month and will tell hem I am ready for the pain pump!! Thing's will get better for me Susan...I just know they will!!
    Patsy W :H
  • Bless her heart (does that make me sound like a Grandma?), M, the programmer, wrote down all 16 eletrodes and turned on 1 through 16, noting where I felt stimulation. Only 9 and 10 provided stimulation in my feet but to get any relief at all, the amplitude had to be turned up really high. As we all have heard before, everyone is wired differently and that was the reason for doing this exercise. M also told me that back pain, like foot pain, can be controlled but the nerves in the low back and in the feet are buried deep beneath the soft tissue and requires a very high degree of stimulation. So, whereas I can get stimulation in my feet, to get that stimulation to a level that relieves the pain, the amplitude has to be turned up so high, my left labia is fluttering. That is, the stimulation is intense and not necessarily where I need or want it. The diagram from ANS showing the dermatomes and where leads should be placed to provide stimulation on certain parts of the body suggests that T10 will stimulate hips, butt, etc. and T11 is needed to stimulate anything below the knees. I read T12 is the place for foot pain. My surgeon thinks I should be able to get stimulation in my feet with my leads at T10 so after I live with my new programs a few days, I'll be seeing the surgeon along with the St. Jude's rep. I need to get an xray beforehand but I may need another device. I don't want to give up the coverage on my hip. Its been raining all day today. My feet hurt. But all is good as I am no longer depressed. It seems it wasn't a question of having the right checklist, it was simply a reaction to the anesthesia. Susan.
  • That's a lot of imformation! :jawdrop:

    Just kidding... :jawdrop:


    That kind of makes sense to me about the back coverage. I have a line of pain that runs down my T area just between my spine and right shoulder blade. It was only this last week that I realized that my settings for my massage actually knock about 1/2 of that pain out. I have to turn it up high, I'm not sure but I think I have seen some stimulation change the last month or so. Maybe that is part of it? Anyway, It has been nice to be able to get to some of that pain too! Before it just sat there and hurt, not matter what settings I tried.

    Sorry to hear you may need to have your leads moved/replaced but glad to see they are figuring out what is going on and what needs to happen to help you!
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