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3 weeks out from SCS and having trouble getting it to work :(

texastigerttexastiger Posts: 48
edited 06/11/2012 - 7:48 AM in Spinal Cord Stimulation
Hello again,

Its been a while since I have posted but I had a SCS implanted 3 weeks ago today. I got amazing results in my trial (mostly left leg pain and weakness) and then in the hospital after my perm. But about 1 1/2 weeks from the perm, I was not getting relief. The rep gave me a new program. When I ramp it up I can feel the buzzing down the entire leg but I am not getting nerve pain relief or muscle strength-like I was. I know that I can get the relief since I have already gotten it but I don't understand how this all works and I am getting quite frustrated with this. Does it really take a lot of tweaking and reprogramming, etc???

I need any and all advice for people who have success with the SCS.

Thanks in advance for your time and advice.
Becca
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Comments

  • Is the rep you are using the same one who programmed your trial? Reps have their own "style" when it comes to programming and that can make a significant difference in the coverage you get or don't get. Most reps make a print out of the programming done each time and it is possible the trial programming is in your medical records. It may be worthwhile to see if you can get the doc or rep to compare your current programming.

    It is also possible that there is a problem with the system itself. I developed a signal problem a week after I had a revision done and it took a lot to convince the rep to take me seriously. I had a wire come loose from my generator and it was causing the signal to drop off and also biting me in the backside periodically.

    Be persistent. Don't let anyone convince you that "this is as good as you're going to get".

    "C"
  • I had different reps that programmed the trial and the perm. My same rep was there watching but she didn't program the trial and in fact, didn't program my first perm. She came by and checked on me after I was programmed on the perm while I was still in recovery and then again in the hospital. She did do my second round of programming.

    I guess I am having trouble understanding the whole nerve pain and why things work sometimes and not others. I am still taking all my meds which I hope to decrease but can't until the SCS starts working. When it works, it is amazing! I can pick up my leg and I can wear pants, covers, etc...

    Thanks for listening and the advice and encouragement!
  • I remember that as I healed, the coverage would change, and we would have to program again to try and find the right combination. I hope that's all it is for you and not a problem with your stimulator. Best wishes!

    "C", I'm having a similar issue as you describe with just one of my programs right now (of course it is the one I usually use all the time and I've had to switch it off and use another one). I'm meeting the Boston Scientific rep on Wednesday to try and see what is going on with it.
  • How long have ya'll had yours?

    Thanks again for the advice...
  • I received my permanent implant 2.5 years ago.

    Since your programmers were different, there's a strong possibility you aren't programmed in a manner you need to get good coverage. There are some many ways to program that it takes a rep with some patience and background experience to figure out what might work best for your condition.

    Honeysmom,

    Let us know what the rep says on Wednesday.

    "C"
  • it did take quite a bit of reprogramming. I just kept going back until I was happy - knowing there was about a kajillion settings they could try.

    The one I have now and have had for many months......I'm in love. Never turn it off.....it is so comforting. I am quite addicted now to the buzzing. I hope you are able to find relief.

    I second "C's" advice to have them print off the program that works. (P.s. Don't let them delete programs...just create new ones. You never know if the next one will be worse - just have them keep creating new ones until they find the right ones and THEN they can delete old ones. But not until.)

    It isn't as easy as it seems to reproduce a setting, so definitely have them print it out and put it in your file in the case of a new /substitute programmer.

    I've had mine since January, 2009.

    Be sure to stand up and sit down during reprogramming.

    Take care,

    Cheri
  • I just started another thread about my current issue with my stimulator and hadn't seen the question you asked me on this one.
    I've had my stimulator for a little more than one year (11/13/2009).
    C, I didn't see the rep last Wednesday because my appointment was so late in the day, but now that something is terribly wrong with my stimulator today (it turned off this morning and won't turn back on), I'll definitely be seeing a Boston Scientific rep this afternoon. I'm just waiting on confirmation as to when and where.
    I have such a great combination of treatment going on right now and this sucks to have part of that combination completely stop on me today! I'm sure we'll figure it out.
  • have yu checked your batterys? Your about the 3d person I have read that is having trouble with BS, on person I kow it was jsut her batteries in her hand held programmer. Have youkept the cahrger pluged in 24/7 to recharge the Ipg. Hope this helps. Rose wizz47
  • Oh yes. I had just charged my stimulator about 4 days ago for 4 hours and he was able to see it still had all 3 bars (fully charged) today. The remote control batteries were changed for the second time ever two weeks ago, so we know that the battery isn't the problem. He was able to isolate the problem through an analysis program. Something is going on inside of me - something has come loose.
  • Oh Honeysmom, I am so sorry. How do they tell if something is loose? How do they fix it? Please keep up updated...I can't imagine going from having it working to having something go wrong internally.

    I am still reprogramming but getting better results since my last reprogram a week ago.

    Keep us posted,
    Becca
  • they get you taken care of soon, are you still on /or efer on pain meds until you get this fixed? Keeping my fingeres crossed, and prayers comming. Rose wizz47
  • Thanks, Rose and Becca. No feedback yet from the xrays, but I did get a text message from the rep asking me if I can come on Monday afternoon to meet with the engineer from Boston Scientific at my doctor's office. I sure am missing that SCS. I might appreciate it more now that I don't have it. I have pain medication on hand, but I can definitely tell the combination of SCS and medication was helping me a lot! I guess I'll know more on Monday.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    They have never been able to replicate the trial coverage with the permanent one for me. although like the rest I say keep trying. I've had mine reprogrammed many, many times and it's still not what I would like. But I'll beat it to death if I have to! Keep trying!
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
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