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Trial Failed

tennisbunny4541ttennisbunny4541 Posts: 7
edited 06/11/2012 - 8:58 AM in Spinal Cord Stimulation
Ok. So I went through the initial pain of having this put in on tuesday. By Wednesday it had slipped an inch according to xray. Then followed up on Thursday and it had slipped another inch. Is this common for it to slip this much with very little movement? Also went back on friday to office to see specialist from Stimulator Company and of the eight contacts five were dead but with three still in place felt absoloutely nothing.
It was removed and now DR wants to try again this week and put in two leads instead of one. As of now I still have a horrible headache and my back hurts worse than ever.
What would any of you guys do , if you were me? I dont know what to do . I have multilevel degeneration at four levels this is it for me other than taking pills the rest of my life.
Any and all opinions would be helpful and I appreciate any replies or advice I might get. Thank you.


  • tennisbunny, I also had a stim trial (cervical for me) that just didn't work out for me; it was too positional, and found out later that I had a dural tear. I did feel the stim, but for me, the buzzy feeling of the stim was not too unlike the nervey part of the pain sensation I normally was having, and I just decided that for my situation it would have been too extreme a thing to do since I've had pain issues for more than 20 years and cope pretty well.

    Now, you say you didn't feel the stimulation at all? It's a tough call, but in your shoes I suppose (given that your nerve pain is truly unbearable for you) I would try again. A *tainted* trial is really no trial at all (i.e. dead contacts on a single lead that kept slipping. BUT... I would find out, if you don't already know, just how many stims your doc has done. I'm surprised at the amount of slippage. The headache does not necessarily mean you had a dural tear; the back pain may be due to irritation, the slippage, or just an exacerbation of your nerve pain related to stress/head pain/your physiology.

    Only you can decide what's best for you. Are you a "what if?" type of person? If you don't try again, will it bother you somewhere down the line thinking it may have done something to ease your pain had it worked? Are you prepared if you go forward for pain reduction estimated at approximately 50% -- not total relief? If you try and it does work, are you ready for the changes that may be in your future? (One big one: Many, many doctors will want to be hands-off on patients with stims/pain pumps, as they can be hard to work around in case of surgery, and changing pain docs may cause some of them to prefer you to remain with the doctor who performed the procedure and has overlooked your care. This is not all cases, certainly, but it's best to be prepared mentally for every possibility.

    Meds don't have to rule your life, and there are wise ways to manage dosage increases to allow you to keep them at a low level.

    I hope you have good support and someone you can sit and discuss all the pros and cons with. There's a lot to be said for stimulators, as haglandc will surely attest.

    Good luck, and I hope it works out for you.
  • Thank you so much for your reply. It is very thought provoking for me. You asked the very questions I need to ask myself.
    I am very uncertain about a lot of things but I am certain that this Doctor just dismissed this happening to me like oh well lets just start over again and totally dismissed the pain I had already been through.
    I am going to take a couple of weeks to decide because of insurance issues it will have to be done before January.
    I am also going to check on the doctor who did this procedure and see how many of these he has done .
    Thank you so much for taking the time to help me.
  • I'm glad if I could help you focus on questions to help you traverse this new ground. Hopefully haglandc (one of the moderators) will see this and check in, but feel free to send her a PM if you'd like. She gives awesome advice!

    Take care,
  • I always let my level of pain and discomfort drive my decisions in regards to surgery, procedures or medication. That way there's no mistake in whether I make the right one or not.

    Things move, things fail or break. It's up to us whether we allow that to stand in our way or not. If I were to give up the first time I fail at something or something failed me, I would be stuck in a very miserable existence.

    Doctors see patients every day and much to our dismay, we become just another patient some days. It doesn't mean the doctor doesn't care and it doesn't mean the doctor isn't good at what he does. For us, there is only us and we are trapped inside our painful bodies. So there's no way not to think that we have somehow been dismissed and let down if we aren't number on every doctor's priority list.

    You trusted this doctor the first time without knowing how many of these procedures he has done, why should the second time be any different.

  • I am really glad that you said this exactly the way you did.
    I did trust him the first time because I heard he was a top surgeon in the country.
    I guess I just felt like he dismissed me but I need to see a bigger picture like you stated
    He sees a lot of patients and I guess he probably does care what happens but does not show it well.
    I am just so tired of pain. Nine years now and just now coming to this point and this stimulator they say is my last option. I usually don't just give up. I will give it more thought over a week or two and probably try again. I know I can't keep going with the pain leveling am currently in and this may help if I can just try again.
    Has the stimulator helped you a lot? Is there a huge difference in the temporary and the permanent ?
    Please let me know of your experiences with this. Thank you :)
  • The stimulator has saved my bacon and allowed me to return to life. I went from being unable to walk, work or for that matter function to being able to work once again, workout, ride and train horses, garden, hike, scuba dive etc... I'd say it made a remarkable difference for me.

    Of course the permanent is much better than the temp, but the feeling of relief that the stimulation provides is the same. The permanent stim allows things to be focused much better and adapted to me and my activities. Mine is a cervical stim, so it is far more positional than a stim used for leg or lower back pain. The endorphin release it creates is great for that overall feeling of well being and is irreplaceable. I take zero narcotic medication and live with a clear head every day.

    I am very pleased to have my SCS and I have had it for 3.5 years now.

  • That is so amazing !! What I would give to have my life back. I think I may try again in a week Or so after my body recovers I am so very happy that this worked out for you and your story has given me hope. Thank you for sharing it with me.
  • Don't give up. You are totally worth it!
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