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Confused after scs trial

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:37 AM in Pain Management
Hi all! I hope someone can help me. I finished my trial this past Wednesday. For the most part, the trial for lower back pain went well, until probably the last day of the trial period. I had called the Medtronic rep on the first day after trial to let her know that I was feeling stimulation in my legs and not at all in my back. I didn't hear back from her for 24 hours. I told her what was going on and she told me just try different settings etc. until I found something that worked. She was really not very helpful at all.</--break--> Finally, on the last day of the trial the nurse from PM called and I explained to her about my rep and that I didn't think she was being very helpful. I thought it was her first day on the job! Well, anyway they finally got in touch with a totally different rep and he told me to turn up the stimulation rate as high as I could and that he'd meet me at the office in the morning to do some reprogramming. I turned up the stimulation as high as I could until I could feel it in the back. Just one problem, the stimulation in my legs was so strong I couldn't walk! So, of course I'm thinking the scs is not for me. Next day the rep made some changes so that I could feel the stimulation in my back and thighs. So, I actually only had one day with the right places being covered. I know the stimulator helped in some ways but not actually sure how much? However, now that the trial is over I'm back to feeling very sore! I am also in fear of having another surgery and implant! The doc gave me a month to think about what I want to do. My husband is dead set against it and I really don't have much of a support system. Do you think I can make a rational decision after 1 day of proper stimulation? I took a vicodin for pain that day and was totally pain free for the entire evening! I am very confused as what to do and wonder if anyone else ever felt like this. Sincerely, Angela


  • understanding the the SCS will really not do anything for back pain but will help leg pain. I have gotten the advice from several doctors when I was looking into it. However, everyone is different and my surgeon felt that the SCS was not for me as I had severe back pain.

    Good luck- I hope you do find something that will help you!
  • If you're unsure, ask your Doctor if you can do another trial. The Rep should not have left you so high and dry. It sounds like if the stimulator is set right, it might benefit you. I wouldn't worry about the procedures and everything, concentrate on the benefits. I'm currently doing my trial right now and if I were in your shoes I would be pretty peeved at the Rep. I would go as far as contacting Medtronic and voicing my complaints.

  • You're not alone in your confusion...I've been there. I had the trial for the PNS (peripheral nerve stimulator) which is the same as the SCS except the leads are placed directly over the area of pain and the SCS leads are placed though the spinal canal. I didn't get any relief from the trial stimulator. No matter how many changes they made, I felt absolutely no pain relief. I, also, didn't take any pain meds during my trial so I would know for certain how much pain relief I received. The doctor pulled the leads on the third day. My pain is very low back (sacrum area). I thought that you should feel immediate pain relief if it is to work...if the leads are placed properly and programming done right. I think you need more time to try the stimulator, since they finally got the stimulation in the right place.
  • I think you're understanding about the SCS not being able to help back pain is wrong. I'm currently doing my trial and initially was being stimulated to high, in the butt. I've been playing with this thing for several days and I would have to say its possible to stimulate the back. You just have to tinker with it to get it right.

  • Dave is correct...my stimulation was in my back. It was stimulating the areas of my pain, but didn't help with the pain. I think the leads for the PNS just didn't go deep enough. Give it some more time.
  • What does your neurosurgeon think about all of this? Has it been determined that there's nothing surgically that can be done to help you?

    I found that the feedback from those around me was invaluable in making my decision. Those around me saw such a tremendous difference even though I was uncertain at the time whether it was worth being strapped with a permanent implant. I shut the SCS trial stimulator off for a few hours to see how much difference it was making and when I turned it back on, I had my answer. It was a tremendous help for me.

    My PM doc that gave the referral to the PM doc who did the implant, made me promise not to settle for mediocre results. I agreed and made a promise to myself not to settle for something that wasn't tremendously helpful.

    It's a shame that the rep you were dealing with initially wasn't willing to help. I'm glad that you at least found someone to reprogram you, if only for a day. Since company reps have such varied backgrounds, some are far more dedicated than others. So if the rep support is your biggest concern, discuss that with your PM doc.

    The surgery is no big deal. Consider living in pain as you do every day vs having surgery that will facilitate better pain management for years to come. A few weeks of discomfort is a small price to pay for pain relief.

    One thing that I like to do when I have a big decision like this, is to write everything down on paper. There's a sort of magic that putting pen to paper does, when we cannot see through the confusion in our hearts and minds.

  • I would ask for another trial. Your rep really let you down. You can't base your decesion on just one day!! Do NOT let them push you into making you do something you are not sure about. You have to live with this device the rest of your life. I would certainly ask for another trial and I would not have the permanent implant without it. It's a huge desision to make and if I had any doubts at all about it I would not have it done.
    That is just my opinion for what it is worth and it may not be worth much.
    Patsy W :H
  • I am also on the trial and stim in my back. Like Dave said, it definately takes more tweaking to get it right, but it can be done.

    ETA: I also wanted to say that I would let the company know what a poor job that your rep did. Their job is to be there to help you get the right stim.
  • You had one evening that you were pain free! That is very good news. The SCS is a tool that can help you manage pain. Sounds like the combination of the SCS and the pain medication did the trick. It was just for an evening, but it showed you that it is possible to be pain free. A successful trial is usually a decrease in pain by 50%. Getting proper stimulation can take time and a trial is more positional than the permanent implant. For me and many others, programming is an on going process. I have adjustments made every few months. Just knowing that you were able to have an evening without pain should give you hope.
  • I would have to agree with everyone. If you got some relief it is worth asking for another trial with a rep that will work with you. If you are concerned about your husband, and I hope I read that right...if not please disreguard, only you know how your relationship stands. If the device helped you enough for you to make a stand to your husband, then I would have to say it is worth you talking to him and explaining how much better your felt. Remember for 8 weeks there is no lifting, twisting, or bending so you will need a lot of help around the house. If your husband won't support you for those 8 weeks then you really need to think hard about this. I am a single mom and...well my boys don't clean like I do...I find myself irritated looking at what needs to be done and know I can't do it. I have wonderful neighbors and family that visit and help. If I didn't have these people helping me I couldn't of done it. You need that support. Like I said if I read the post wrong. Disreguard. This is a difficult decision...and maybe talking to you doctor about not having any support will help you come to the right decision.
  • One thing that seems to help a LOT of spouses "get it" is to have them attend your appts. Beg, plead if needed, hearing the words come from someone elses mouth really helps as they can believe we are being truthful.

    Been there, done that.
  • Thanks to all of you for your kindness and concern. I think I am getting closer to making a decision since I have been in so much pain after the trial. I am realizing now how much it actually helped me. I still need to talk to my PM doctor about some issues and need to talk to my husband who actually thinks I'm not even considering getting the permanent SCS.
    He works 58 hours a week and I don't really get to sit down and talk too him much! He really thinks that the hardware in my back is causing me all of this pain and therefore getting another implant would just cause more pain for me.

    As far as the permanent implant goes, my 24 yr. old daughter has just moved home so I wouldn't be totally alone after the surgery.

    Anjuan, congratulations on your successful trial!
    Dave, I hope you are doing well also!
    Wrambler, He went with me for the trial placement and listened to everything that was said!!
  • Thank you for the well wishes. I have had better days but am still plugging along. Unfortunately for me, none of the Hospitals in my area will do an SCS implant. I have to travel to another state (about 30 miles) to get the implant. I'm waiting on my appointments to be established now.

    Not to play devils advocate here, but your husband might have a point, especially if you have back pain. I had my hardware removed last year for several issues:

    1.) Back Pain
    2.) Right Foot Drop
    3.) Nerve Pain in both legs and feet

    The hardware removal fixed 2 out of the 3 problems. The foot drop is completely gone and the majority of the back pain is gone. I have severe arthritis and SI Joint dysfunction so obviously that wasn't going to be fixed by the hardware removal. Maybe your husband has a point. They can do a block around the hardware (I did not have one) to determine if it is causing problems. Check into it, removing the hardware might help some of your problem and eliminate the need for an SCS or boost the success of one.

    Just a thought.

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