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No stimulation in feet

stockbrokersstockbroker Posts: 464
edited 06/11/2012 - 8:38 AM in Spinal Cord Stimulation
My paddle leads are located at T9 and T10. In a meeting with my ANS rep I was told that leads are usually placed lower in order to cover the feet. Over the past couple of months I have contacted a number of you who get stimulation in your feet and have found some having leads as high as T7. In one of the last meetings with my rep, she turned on each electrode and noted where I felt stimulation. Only two gave me any sensation in my feet and in order to get it I had to turn to amplitude up so high, I got stomach cramps. I saw the surgeon yesterday (the ANS rep was present) to see if he thought that lowering the leads or, even, introducing another set of leads would get the stimulation into my feet. At the time of the trial/implant, my foot pain was mild. It has since intensified to the point where it is unbelievable difficult to walk. I think all would agree that being able to walk comfortably would be a prerequisite for having a good quality of life. The stimulator provides so much relief in my legs, I am convinced it could provide relief in my feet as well. My surgeon, however, is not so convinced. I guess feet are always difficult to deal with. (Yesterday, my NS was also difficult to deal with giving me so answers, no information and even uttering my greatest pet peeve, "it is what it is"---whatever that means. His explanation as for why my feet were now hurting was that pain meds make pain worse. If it were up to him, I wouldn't take any. (Forgive me if I'm rambling. I'm really upset. I probably should have written an outline before I began this post). After I left his office, it occured to me (given other comments that he had made) that his opinion that pain meds make pain worse was a reference to developing tolerance. I don't think if I were developing tolerance, it would manifest itself just in my feet but would be shown as an overall increase in my total experience of pain. He gave me practically no information, had few recommendations and, I guess this wouldn't be all that uncommon among neurosurgeons, generally was not a great communicator. After we left his office, the rep and I had a long talk. While we were in with the doc, my rep agreed with him that I should be able to get stimulation in my feet with my leads where they currently are. I still love her, though. So, if I want, I can go through another trial with the PM doc who tortured me before. We would put in a lead (or leads) around T11 T12 and shut off my existing stimulator. One of the concerns about simply lowering my leads is that I might lose stimulation in a place I now have it and want it. Only another trial would answer the question as to whether a lower lead would get into my feet. There can be no conjecturing. If the new trial covers my feet and my legs I could go the route of lowering my existing leads. If the new trial covers me feet but I lose coverage of my legs, I could have another set of leads implanted and have another IPG placed in my right butt cheek. I would be symetrical. Or, I could just leave things as they are and be glad that I have what relief I have. "It is what it is". I know i have impedence from scar tissue. I know my lumbar spine is a mess of scar tissue. I don't know what these additional procedures would contribute to the scar tissue/impedence situation. My doc was kind of grumpy and uncooperative (quite unlike me LOL who had been awake since 3am, forgot to take my meds, parked two miles away from his office and they had to make another trip back to the car because I had forgotten my xrays. The xrays, BTW show absolutely perfectly place leads. I made an appointment to see the PM who does the trials. I think she will be a better communicator. My gut reaction is to try for better coverage. I just felt so shot down by my surgeon. I don't know, maybe he felt shot down by me because I wasn't 100% satisfied with my results. I called my PM. Dr. W (not the intervential PM Dr. P who does the trial) because I think she is the one who is overseeing the big picture of my case but I haven't heard from her. Any thoughts? Susan
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Comments

  • Do the trial and go for the gold.
  • It sounds like your NS is referring to the theory of Hyperalgesia when he says that your pain meds are causing your pain to be worse.

    Many docs are hesitant to chase after further pain relief, once they have successfully conquered what was at the time the "chief complaint".

    It is a very weighted risk, to try and capture further relief with more surgery given the propensity that your body has for scar tissue development.

    What other modalities and medications have you tried for battling the pain in your feet?

    "C"
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  • Forgive me if I am wrong but are you not just a few weeks post op? I have had to go back at least every other week. I have the opposite problem...they get the stimulation in the right spot and a week or week and a half later it is in my foot. My leads were placed in the coccyxal area. I can get stimulation from my butt to my toes. I have impedence and that is why the rep said things will keep changing. I would try the trial but remember if you are not that far out post op you may still have internal swelling that is changing things...either stopping the stimulation or causing more foot pain. I hope that helps. I love my placement...much lower than normal people but I can tingle all over.
  • I think you have been implanted for some time now.
    If the PM agrees I'd try another trial. Well, you also have to get all the red tape people to agree to!

    I'd be afraid to let them move a lead that seems to have such good coverage on your legs. Maybe, just maybe they can do a precutaneous lead placement for the feet? be a lot less invasive, well, not a lot.
    Also be a PIA to have two...pun there, sorry.

    I agree with "C" once they do a SCS they (docs in general) seem to think, all fixed now...

    I have been fighting knots, spasms between my shoulder blades for a while, all I get from my PCP is a "oh well". My shrink gave me flexeril and Valium, which helps the spasms and pain, but the Valium is depressing me, been there/here before. the shrink wants me to talk over better spasm control with the PM, I figure he will just want to inject something. I'm pretty worked up over the whole mess.
    Seeing the PM on Thursday, need medical papers, need spasm help, need a new program...

    Ain't life grand?

    Hope your docs can find a way to get your feet covered.

  • I've had my implant for just over six months. Again, I did not have this level of pain in my feet at the time of the trial/implant. I'm not sure why this pain has gotten worse. We are all assuming its scar tissue which can continue to grow. I don't think I would be chasing after every new ache and pain that came along by trying to stimulate it but feet are major. I did not get relief from the pain just beneath my hip bone but that pain is not preventing me from walking. With this nerve damage I have had severe pains or burning sensations that have lasted several months and then just gone away. I keep hoping that the foot pain will vanish on its own. Both reps have told me my leads are too high to cover the feet but I guess certain parts of the body are wildly unpredictable, feet, hips, low back among them. I certainly think its worth talking to the interventional PM.

    C, I have tried every imaginable treatment for my foot pain. I have not found a nerve drug I can tolerate which, I think, is what led me to the SCS to begin with. I've tried more PT recently. I have orthodics. I've gained a disgusting amount of weight which embarrasses the erstwhile slim, trim athlete I once was.

    After my appointment, I remembered what Bionic Woman had said about the neurosurgeon being the mechanic and not being the one to drive the car. I loved that analogy and if my mechanic would have had a sense of humor yesterday, I would have told him the story. Unfortunately, right now, my car has flat tires. Oh yes, and Wrambler, my check engine light is on. Susan
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  • I've noticed that before my SCS, my leg nerve pain was the only pain I recognized and I truly thought that was the only pain I had. I denied back pain entirely.

    Since the SCS has so effectively covered my radiating nerve pain, my back pain is prominent. I thought it was "new" pain, but after much consideration and discussion with docs, they all believe I always had back pain (with my 3 surgeries, failed back syndrome, etc.). It's just for me, only one bad pain can manifest at a time.

    Do you think it is possible that your feet always hurt, but the leg nerve pain was so much worse. Now that that pain is lessened, the foot pain comes to the forefront, or do you truly think this is new foot pain?

    What to do? I have a firm opinion. I would NOT for any amount of money move your current paddle leads. Chances that you would lose your current coverage and never again regain it? HUGE.

    I would, however, consider a second SCS. In a heart beat if I found the trial to cover the pain.

    I was bummed that I did not get paddle leads at the time, but quickly became thrilled I had percutaneous. Having my perc leads down at L1-L2 (much lower than anyone else ever states they have theirs place) gives me almost field stimulation, per my rep. This is why I can't get any back pain relief - the leads are too low.

    Should my back pain increase, I would have to go with a 2nd SCS higher up. I would NEVER let them touch the position or my current leads, since they work great. (NOw, if my current SCS stopped working entirely, that would be different.)

    Good luck! P.S. My NS is the same way - cannot carry a conversation with him. I think he has Aspergers or something, not kidding. But he is technically excellent. I just can hardly deal with him. lol

    Cheri
  • Same with my back pain, spasms, knots, whatever you want to call them. My wife asked if they are new. I told her no, but with my previous life of pain medicine and shoulder pain out of control the back pain just took a "back" seat.

    Now it is sort of driving. It is bad enough most days I just ignore the shoulder stuff.

    gotta love how pain can lead to depression that leads to increased sensitivity to pain, that leads to depression....Life, nobody gets out alive...no don't panic, just my happy thought for today. :D
  • As Dave said. Do the trial and go for the gold!!

    Cheers
    Patsy W
  • my leads were placed at T10. At the present time we are only using the lower half of the leads and i have stim in both my feet. In order to do this i got a pounding sensation in my knees. I control this with the balance of the leads. I can feel a strong pulse all the way to the tips of my toes. I do have began experiencing back pain since my implant. I agree that this pain was most likely subdued by the intense pain i had in my legs and feet.
  • I developed a stress fracture in one of the bones in my foot. It made walking excruciatingly painful. That's how I feel now. At the time of my trial, I was not experiencing a great deal of foot pain and it was somewhat intermittant. Now, it is more constant and it keeps me from walking. I don't think this is something that would have gone unnoticed. I am concerned that this pain has gotten worse and now involves both feet as I had thought the pain would not change in location or intensity. It always follows the L5 nerve route. The NS said that I could get a CT scan but he didn't say that I should get one which was just how vague and unsatisfying the conversation went. Cheri, my existing system would not be removed, it would be shut off for the trial. Depending on the results of the new trial, the current leads would be lowered or new leads implanted. Susan
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