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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


  • 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?

  • 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
  • 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

  • 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!!

    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
  • Susan, I know you have a paddle lead (unless I'm having a brain fart on that piece of information) but do you know which specific paddle you have?

  • I wanted to put a thought out for you in regards to your feet. After my trial, I was really uncomfortable. Everything seemed a lot worse than it was prior to my trial. I talked to my Doctor about doing something for the short term until I get my implant. About 2 1/2 weeks ago I had a selective nerve root block. It managed to drop everything back down to pre-trial levels. The best part is that my tender foot problem is a lot better since the block. It's not gone, but I don't wince with every step I take now (sounds like a song doesn't it?).

  • "I have often walked on this street before, but the pavement always stayed beneath my feet before, now as I walk by, my feet wince and cry, knowing they're on the street where you live." I will mention that to my PM Dr. W. and PM Dr. P.
  • I guess these boots were made for walkin.....
  • I don't understand the question? Would you re-phrase, please. Actually, I have two paddle leads (ANS) each with 16 elecrodes. Is that what you were asking?
  • ANS makes a lot of different paddle leads. They have the Lamitrode Series, Lamitrode C-series, Tripole Series, with several variations of leads in each of those categories. I was wondering if you knew what lead model you have?

    It's possible to have 2 paddles, but not with 16 on each unless you have to have 2 IPGs...? None of the manufacturers have an approved 32-contact IPG on the market at this time. :?
  • I don't know. I would have to ask my rep. I was going to call her on Monday anyway, so I'll ask. I'm afraid if I asked my surgeon he would say something cryptic like "it is what it is." Okay, I'm going to really concentrate on getting over that appointment. Susan
  • Is that possibly what your NS was trying to say that you may have from the pain meds? I have heard of it before. My PM does not believe that it exists. Try and keep your chin up. Maybe your PM will have much more insight than your NS. Any chance that you can get another opinion from another NS?
  • I don't think that my intervetional PM will necessarily have better insights but I do believe she will have better verbal skills. This guy also wins the eye-rolling contest. For example, he asked my what kinds of meds I'm taking. "Pain meds?" I asked. Eye roll. I told him Kadian and Dilaudi
    "Those are vert strong. Did you start out taking Dilaudid?" I didn't bother trying to tell him how sensitive I am to drugs and Dilaudid was the first narcotic I found that didn't give me panic attacks. The Kadian was given to me by the PM doc he sent me to because she wanted me to cut back on the Dilaudid and take a long-acting med. I understand what tolerance is. It was one of the main reasons a SCS was recommended to me. It could have been my less than wonderful mood, but I felt defensive and I never even said "It is what it is". And that's that.
  • On the diagnostic report, under the heading lead configuration, its says Lamitrode 88 or 88C.

    As an aside, do any of you remember the really weird psychologist I saw for my psych evaluation. I saw him, filled our some questionnaires and he passed me. I then had (what I now know is my annual fall pain flare) and was very frustrated waiting for insurance approval so I thought I would go see this guy for some counselling. After some hesitation, he said "yes". I got there late. He was angry. He suddenly demanded I take another psychological test (the MMPI2). I didn't see how this would constitute counselling and asked him why he wanted me to take it. He pointed at his watch. I left, without even having an appointment. When I got back to my office I called his office and was told that taking the MMPI2 had nothing to do with gettting my SCS. So, this guy started calling me at my house around 6 or 7 pm asking me to come in and take the test. That if I wouldn't, I wouldn't get my stim. I asked the hospital to send me my medical records and here was his notes for my office visit that went on and on about what was said (when, in fact, practically nothing had been said), It was written in such a way as to make me sound like a real fruitcake (no jokes, please). For instance, when I went to meet the PM who was going to do the trial, the folks at that office asked if I wanted to schedule an appointment to meet with their psychologist and I told them I was supposed to go back to the medical college and see their psychologist. In this guys report he said the folks at this clinic recommended I see their psychologist but I refused, making it sound like I did something bad. He said I finally admitted to taking Clonazapam for anxiety where right on all my medical records is says I take it at bedtime. My spinal surgeon had me start taking it to sleep. So, anyway, I found out from another pain psychologist that I saw at my current clinic that this other psychologist did very much the same thing to another woman. She was being tested for fitness for duty for a small police department. He gave her written tests and then sent the tests out for scoring. When the results came in, he kind of cut and pasted statements out of the outsourced reports and reassembled them into an extremely negative report which caused this woman to lose her job. There ended up being a big law suit. I'm so glad I didn't take that other test. I didn't trust him. I thought he was really squirrely. I could have ended up with an extremely negative report in my file that would folllow me around the rest of my life. But why would he do this to people? I, of course filed a complaint with the hospital, with my insurance company, with the Department of Regulation and Licensing but it was his word against mine. What a wierdo.
  • Hope your feeling better today.

    Hope you get a good office visit in with someone who has a "new" or "better" idea than Dr. eyeroll...(do those come with duck sauce, Hot mustard or sweet and sour?)
  • Dr. P is the interventional PM who did my first trial. Needless to say, she remembered it!!! I never did hear from the surgeon whom I had emailed with a. a couple of questions I never got to ask him and b. a request to send an order to Dr. P as he had advised me that that would be my next step if I wanted to pursue things. When I never heard from the NS, I thought I would have to cancel my appointment with Dr. P but her people told me to come anyway that she could answer any question that the NS could answer since she had done the trial

    So,first of all, Dr. P checked my records to see that I certainly had indicated that my pain pattern extended exactly along the L5 dermatome right into my feet. Dr. P's first reaction to my increased foot pain was exactly what Cheri has said. She said people ALWAYS feel an increase in pain in location B after the pain in location A is relieved assuming they came in with pain at A and B. However, she did not rule out the possibility that something more was going on. I told her that the NS had said I COULD get a CT scan but he didn't say that I should, once again leaving it up to me. Dr. P thought the scan would be a good idea "just to rule out any surgical possibility or anything else going on that would explain the increase in foot pain.

    While I waited in the exam room, Dr. P called the NS and I guess he hastily put some notes together and faxxed them over. In them, the NS recommended I get a myleogram. (I hear that hurts like nobody's business. I had a CT scan once with contrast dye and went home and vomited the rest of the day with a major headache.) I asked if I could see his notes and at the end he said I had arachnoiditis "What?", I asked. She told me that I did NOT have arachnoiditis. Maybe the notes were drafted too quickly (my thought). I had asked Dr. P whether she thought I was a prolific producer of scar tissue or if the amount of scar tissue she saw when she did my trial and the amount of impedence I have currently with my stim is pretty typical. She voted for "typical".

    She then began thinking outloud. It would be very difficult to thread a lead into the epidural space. She had a hard time getting through the scar tissue the first time but now she would have to deal with leads being in that space. She wouldn't want to do anything to hurt (for lack of a better word) the existing leads. She wasn't sure my insurance would approve another system. I would not need another psych eval.

    Ultimately, she said she would consult with the NS and call me.

    I've been feeling really depressed again. I'm in that typical downward spiral of a chronic pain patient. My activity level has actually declined since I got the stimulator. It was far easier to exercise with leg pain than with this foot pain. I've lost my fighting spirit. I don't know that I really want to go through a bunch of painful procedures when nobody knows if lower leads will help. The trial might work and then after the implant, scar tissue grows and maybe then, I'll lose the stimulation. (BTW, at this point in time I cannot get stimulation in JUST my right leg whereas I could early on after implantation. Now its just left or both. The one leg only program was the best at getting into my hip.)

    I think thats absolutely everything. Susan

  • Sorry, to hear you are getting the run around...I'd like to say, cheer up or something.

    But, my 6 month appt has left me scratching my head.
    I can't put much into a post right now. I am so tired of this merry-go-round to...The least they could do is turn off the music...Or pick a better song.
  • Sorry about the diagnosis of Arachnoiditis or as I call it a broken nerve. Ok, maybe a really broken nerve. Did you ask Dr P if a nerve block could provide some relief or at least cut it down a little? I know that sounds like grab'n at straws, but what the hell.

    My Doctor encourages me to stay active and continue my stretching and walking. He believes that my simple exercise program has at least prevented my broken nerve(s) from taking over my life and slowed it down from getting worse. Now you know why I do what I do. My drop foot in my right foot returned last month, so needless to say, my Doctor is concerned that I'm going to hurt myself.

    You're going to beat this Susan because that's what strong willed people like yourself do. Hope you have a nice weekend and a Happy Thanksgiving.

  • I'm not sure why the arachnoiditis was on the NS' notes. I think he just wrote them up too quickly and meant to say that I should have a myleogram to see IF I have arachnoiditis. I don't know how he could make that diagnosis without a scan. Who knows?
  • You can't make that diagnosis without a scan. Not sure it really matters what the diagnosis is, your nerves are broke. You need to focus on how to manage your nerves so you can do whatever you want to do. Let us know what we can do for you.

  • Glad to hear they approved your second trial hope it works! Go ahead and cry, sometimes it helps, your head will be down in that stupid pillow anyway, no one will know!

    From the little bit of fact gathering I have done.
    Standard SSRI's can hinder treatment for Bipolar type II and make depression worse. I think the Lamictal is working fairly well, I am of the opinion the dose may not be high enough, the PM I don't like said it is not high enough, so tomorrow morning I will find out what my shrink thinks!

    From what I read Lamictal can help the pain as well as Bipolar type II, but it usually takes 150mg a day +- I'm taking 75, so maybe...
  • Good luck with the new trial. I've tried Savella. It worked pretty good. Unfortunately, I suffered from one of its side effects, it bumped my BP by 20 points, S/D, and sent my heart racing (my wife should only be able to do this and does) to well over a 100 for a couple weeks straight. I don't remember if it helped with my tender foot problem. Hopefully you will have better luck with it.

  • Tuesday, Dec. 8 at 1PM I am having a second trial. I guess my insurance company okayed it. The lead will be lower. I read somewhere that at L1, there is a 100% chance of getting the feet. I called my secondary ANS rep (the primary just had a beautiful bouncing baby boy.) He didn't know anything about it and he is booked solid that day so he's scrambling to find someone. I also saw my other pain doc. I told her my psychiatrist REALLY wants me to try Savella. The pain doc said she had been wanting to try it on someone but with it being so new she didn't want to make one of her patients be a guinna pig. "I'll be a guina pig", I told her. Wrambler, this is a nerve pain drug (well, its actually for fibromyalgia) that is very similar to Cymbalta or Effexor in so far as it is a SNRI. I don't know how it works for bipolar but I would be killing two birds with one stone (pain and depresson). I stopped at the interventional PM doc's office where I found a copy of a letter written to me by the eely NS. Once again he said I had arachnoiditis and recommended against a CT scan. (He did hedge that with an opposite recommendation but I'm just going to let him fix the car and not worry about his apparent inability to drive it, as Bionic said. He is a very good spine mechanic.) The pain doc who gave me the Savella agreed with my decision to have a second SCS trial especially since I am unable to tolerate almost every drug out there. So, take pity on me for the hours of torture I must endure to get that lead through my scar tissue. Then be excited for me as I might be able to deal with the foot pain. I'm going to try to be a big girl and not cry this time. Susan
  • Okay. So I cleared my schedule for Tuesday. That entailed cancelling two business appointments and adding a new one (with the big, big boss that would be on my way to the hospital.) Tuesday is my husband's day off which is good because he is a mailman and no mailman (letter carrier) can "take off" in December. The P.O is hidiously busy and my beloved husband is hidiously grumpy (as in tired.) I had instructions to get some lab work done. This I did on Thursday. Today, I took a well deserved day off. At least, that was the plan. My primary's office kept calling saying I had to come in for a pre-op exam. "No, no, no", I ust needed some labs which have been done." They called again, Dr. J says you must come in for a pre-op. I explained I was just having a "procedure". Later in the day, I got at call from the neurosurgeon's office. they were scheduling the implantation of the paddle leads (in spite of my brand spanking new where did it come from diagnosis of arachnoiditis. A-h-h-h, now it makes sense. I called my primary's office explained what was going on and scheduled an appointment for Thursday morning at 8:30 for a pre-op exam. Then I called the ANS rep who told me he couldn't make the Tues at 1pm trial...that the department has told him they haven't been able to reach me. "That's odd," I replied. "They have all three of my phone numbers plus I've told them to always leave messages at my office where I always check in for messages. I haven't heard anything." I told him I would call the department. I did. Rather than pressing the button that would send me to the recorded message, I pressed 1 for a doctor or a doctor's representative. The person who answered the phone was the person trying to reschedule my appointment. I greeted her and announced who was calling. She scolded me at length for pressing the #1 key and sent me off to the recorded message line. I hung up and told the ANS rep what happened. So he said he would send another rep to the trial on Tues. at 1pm. Friday night, I volunteered to drive down the road and pick up perch and bluegill fish fries (this is ritual Friday night fare in Wisconsin). In my car I saw I had left my cell phone. On it were 4 frantic messages. 1. I must have my labs done at the hospital one and a half hours away from my house--NOT at my primary's clinic as planned (and has already been accomplished as per original instructions.) The last was they were changing the date and time of the trial because the ANS couldn't make Tues. at 1 so they were pushing me to Wednesday at 9AM.
    Now, it is Friday at 6pm. I cannot believe they would change my appointment without talking to me. I was able to get the doc on the phone. She agreed they shouldn't have changed the appointment without talking to me. The 1 PM on Tuesday has been booked and is no longer available. Do I want her to change all of her Tuesday appointments? My good girl guilt doesn't respond, "You betcha". (This doctor is really, really nice.) My husband will have a very hard time getting off of work on Wed. There are all of those appointments (December is an extremely busy month for me)I rearranged. Plus, how could I go for a pre-op physical the day after a stim trial? Can the ANS now change his plans again? And remember, the actual implantation is scheduled for the following Wednesday. If the trial is on Wed., how long will I be able to keep the unit.
    This is such a big mess and was handled so poorly, I am really stressing and my pain levels are skyrocketing. These ladies had my other phone numbers. Why didn't H just talk to me when I called rather than insisting I leave a message for her to call me back?
    I called the rep knowing full well that he won't call me back b/4 Monday. So, I have no idea what is happening. According to the doctor, it was all about the rep. He is not the customer. He does not pay the bills. I don't even like this guy. I was perfectly happy with the substitute (who himself has two stims implanted).
    If I do this this year, its "free". If I wait unil 2010, it will cost $4000. I have a headache. My pain is flaring and I'm awake at 3AM. (So is Bionic Woman, I see).
    Okay, I'm done. Poor, mistreated, misunderstood baby. Susan
    I just reread this post. How many think I should tell the doc to give me back my 1PM on Tuesday however inconvenient it may be for her OR should I suck up all the inconvenience on my end? She offered to stay late on Tuesday but I told her I didn't want her doing this when she was tired.

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