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*Very* Rough Trial Day 1: Need Help/Ideas

Lala329LLala329 Posts: 283
edited 06/11/2012 - 8:44 AM in Spinal Cord Stimulation
Hi spineys,

I'm typing this quick because I'm really hurting. Had my trial unit put in today which was extremely difficult. My epidural space is apparently "extremely tight" and they encountered some type of something around T8 which caused extreme pain- my doc is guessing it's yet another cyst, but he said there could also be some pathology there from my accident since I never had any thoracic spine imaging. They couldn't get adequate stim any lower, so the leads are sitting at T8 and causing quite a bit of pain...They tried to advance up to T7 but I couldn't tolerate it.

I'm not getting good lower back coverage at all. No matter where they put the leads it just never got tingly anywhere in my lumbar spine, except when the stim was turned up so high I was having all sorts of abdominal pain as well. It's the dorsal root versus dorsal column dilemma I believe. Now at home when I lay on my back I get a little tingling in my lower back, but it's only when I lay on my back which I'm assuming is pushing the leads closer to the cord. The tingling actually seems to increase the low back pain if that is even possible? It's gangbusters awesome for my leg pain, but I honestly think the little bit of stimulation I'm getting might be making my back pain worse? Has anyone ever heard of the stim worsening LBP? I believe this happened to PatWhite...

We were all disappointed in how it went...My doctor is not too optimistic, but since we went through all this he decided it was worth it to leave the leads in for 48 hours in the hope that whatever was obstructing the epidural space at T8 calms down and maybe then I'll have more satisfactory stimulation. He said if I can't tolerate the pain of the leads to just come back in tomorrow and he'll go ahead and pull them out...

I'm torn because I really want this to work, but at the same time the pain where the leads are sitting is pretty bad. I'm also just not sure if the little bit of stimulation is actually making the LBP worse, or if it is just aggravation from the procedure itself. It certainly does not seem to be helping the LBP at all. I guess I'm torn because I know it usually takes 48 hours for the procedure pain to go away, but I don't know that I'll be able to tolerate the pain where the leads are for much more than a few days....Do you think it's giving up too soon, or did most of you guys have at least a little relief the first couple days?? My doc and rep both said most people at least know if it is going to cover their pain area, and since I'm not even feeling like it's covering the pain area it's not likely to improve?

Any feedback or advice would be appreciated...


  • Sorry to hear of the problems you encountered today. One easy way to tell if the stim is aggravating your LBP, is to turn it off for a couple of hours and see if the pain eases or stays the same. Some folks have even had their LBP aggravated by the bandaging becoming tighter once some swelling kicked in.

    I knew from the very first time they turned the stim unit on, that it would work for me for the pain in my arms and hands. Reprogramming got it to help with my neck and shoulders. I almost talked myself out of it a day later, just because I allowed my mind to chew on it too much. My husband could see the difference it was making for me and my friend could hear it in my voice on the phone. I knew intuitively it was a success, I just had to quit analyzing it with my mind.

    What does your intuitive voice say? When you get away from your mind trying to tell you that this is your last best chance for good pain management (which it isn't) and the panic feeling that presents, what does you intuitive voice tell you?

  • Sorry your trial is being difficult. During my trial, the right lead was a little uncomfortable. Probably not the same thing as you, but thought I'd let you know it's not always peaches roses for everyone.

    C has provided some great advice, turn the unit off to see where you stand. Keep this in mind, if you decide that it's helping, they can use surgical leads rather than percutaneous ones.

    Hope your feeling better today.

  • Thanks for the replies guys. Very helpful :)

    The good news for the day is that this thing is really like heaven sent for my leg pain. It's amazing...I could hardly walk 5 minutes two days ago, and I walked several blocks this AM no problem.

    But, I've been playing with it today and had it off most of the morning to really test it and see what it is doing. While my rep did finally come up with a program that gives me some low back coverage it is just not enough without having my legs jumping all over the place to make a difference in my sitting tolerance which was a *huge* goal with this. There is also the issue of how painful the leads are. I don't think it is worsening the LBP- I just can't get the stimulation strong enough to really cover the pain very well. I think maybe yesterday the stimulation may have just been aggravating the swelling or something.

    My gut is saying this isn't working, but it is very hard to let go of it because it has always been my ace in the hole, last resort thing to fall back and depend on. It is also very cool, and the more and more I've learned about SCS the more I feel like it's a great option for CP (if it works). It's just so amazing for my leg pain, and if there were any way to get that amount of coverage in my low back without all the extraneous stimulation...

    I'm off to the mall this afternoon to enjoy this leg coverage while I've got it, and I'll make the decision tomorrow as to whether or not to go ahead and pull the leads. One day at a time, and in spite of the disappointment today will still be a good day.
  • I am sorry to hear you are only getting mixed results with your stim trial. I was wondering though if you've thought about talking with your doc about e proceeding to the permanent implant just for your leg pain? It sounds like you are enjoying some increased mobility. The leads for legs are placed at a lower vertebral level - which your doc could probably approximate for you if he removed your leads gradually and under fluoro. Several others on here (Cherish for one) found better stim as the leads were pulled lower or adjusted. The spinal canal also gets marginally larger the lower the level, so space for leads becomes less of a problem.

    If they can't hit all of your pain generators, I would consider asking if the treatment is worth pursuing for just the legs.

    Good luck!
  • One word of caution if you decide to proceed, based on the help of the leg pain and aid to pain management. That is, please keep in mind that once a medical implant is placed, especially a neurostimulator, things change as to how you are approached, evaluated and treated. SO if there is a potentially better way to attack your pain management just around the corner, you could seriously set yourself back or take yourself out of the running all together by going forward with a "partial fix".

    Technology moves forward so rapidly these days in neuroscience. What they can't do today, doesn't mean that it won't be standard procedure next year.

  • Lala-Sorry you're in such a tough spot. It stinks that you have gotten relief in your legs but not your back. Why do our bodies have to be so darn stubborn sometimes? Yikes...

    It does give me up that the SCS will work for me. I mostly have leg pain, we shall see.

    Again I am sorry....let us know what happens.
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