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Help, I'm in my 1 week trial period using the Neuro Spinal Stimulator and having issues with it.

Posted , 6 users are following.

Silentrumor
Silentrumor

I'm in the one week trial period 3/29/17 of using the Neuro spinal cord stimulator for lumbar and right leg pain.  I notice the next day that I had severe cramping in both legs (I could hardly sit down or stand up) and my arms hurt just to lift themcry.   Has anyone eles experienced this?  

My rep had me turn it down one level.  The next day I saw some improvement, the cramping was only in the right leg but less than the day before. And the arm pain was gone.

The rep turned it down one more level which is today and the pain woke me up most of the night and I can feel the neuropathy in my feet during the day (which I never had that before)  I'm not sure if this device is working for me or not, cause I read where other patients had experienced no pain immediately and watched a few videos from the SCS website with patients having great results, but no one spoke on if they had to adjust the levels to get these great results.  Can anyone please let me know ASAP,  if you've experienced any symtoms during the trial phase?  

Thank You!cheesygrin

2 likes, 15 replies

15 Replies

  • carol78519
    carol78519 Silentrumor

    Posted

    Hi!  I had a trial for the St. Jude SCS.  What happened during the trial was the day after it was placed, I had severe cramping when I would turn it on.  I tried to work thru it but couldn't.  I called the St. Jude tech and he came over and adjusted it.  What happened was - the setting I had the day of was too high after the local anesthetic wore off.  Once the local anesthetic wore off, I needed a lower setting.  

    Could that be what's happening to you?  I wouldn't give up on the trial just yet.  If I were you, I would contact the tech again to readjust.  

    Is is the SCS set to tonic - that's where you feel the "tingling" of the implant.  If so, could that be what you're feeling in your feet?  Maybe that part needs to be lowered as well.

    I did get the permanent SCS.  The tingling felt weird initially but I got used to it and barely noticed it.  I did turn it down when I went to bed - laying down increased the tingling.  I used to dread going to bed because I tossed and turned all night trying to get comfortable.  With the implant, I'm sleeping very well.

    My St. Jude implant was just upgraded to "burst" technology.  I no longer feel any tingling.  It is common to have to have the implant programming adjusted once in a while.  

    Hope this info helps.  Please call the tech for more adjusting.

    Carol

    • Silentrumor
      Silentrumor carol78519

      Posted

      Thank you Carol.  The tech wants to wait til later today to see if it changes for me.  Mine was to high right away, my muscles were cramming up and i felt the pins and needles sensation strong,, so they turn it down a level, then turned it down one more level. I'm hoping it will work today.   I have the Nevro HF10 SCS and the tech don't let me turn it up or down without their say so.. rolleyes

    • carol78519
      carol78519 Silentrumor

      Posted

      I understand.  I don't think the St. Jude tech let me turn up or down the trial that I had either.  Yours definitely sounds too high.  It shouldnt be causing those terrible sensations!  Please let me know how it goes.  Carol

    • johnbuck73
      johnbuck73 Silentrumor

      Posted

      how are you doing with the Nevro now? I am in trial phase and seems like its helping me.
    • Silentrumor
      Silentrumor johnbuck73

      Posted

      I think I found the right one on the Nevro, its program3- level 4...But get this, about 3 weeks ago I got up around 12:30 am and apparently had a fall to where now I've fractured 2 bones in my ankle and I'm wearing a cast up to my knee. on the leg that was effected with nerve pain. eek Oh gosh I have to laugh and also thank you for checking up on me.  So how are you doing?  Did you find the right program that will help you?cheesygrin

  • DJ1976
    DJ1976 Silentrumor

    Posted

    Hi.  Which trial stimulator are you using. If you feel that you are not sure it is working, ask to see your rep. and ask them to re program it and start over.  If you are using BURST from St. Jude's/Abbott there are three settings. 1) tonic...steady flow of electric like tingling through the areas that are affecting you.  2). Pulse feels more intense like you feel with a shiatsu only more intense.  Once they get from you that you are feeling either of the two then they put it in BURST mode and you should not feel either tonic or pulse.  What you can adjust with your controller is a + or - with the number of how high you need the BURST to achieve maximum benefit.

    I hope this helps you.  I have had the BURST surgically implanted on 3/2.  I went through the trial.  I am having problems getting the numbers to where they need to be to achieve the benefit I got thru the trial.  It is a work in progress.

    Good Luck.

    • carol78519
      carol78519 DJ1976

      Posted

      She indicated that she has the Nevro.  I had the St. Jude implanted 11/2015.  They just upgraded my implant to Burst.  It is a lot more effective than the tonic technology.  I have had my implant reprogrammed several times since the initial surgery.  I think it will be a continual tweaking process.  I do like the Burst very much!  Carol

       

    • DJ1976
      DJ1976

      Posted

      Hi. I tried the NEVRO for 7 days and it had absolutely no effect on my pain.  I was the only one in all the trials that had no pain relief.  They used every setting they had and others that they never had to use before.  Then did a BURST trial.  Fabulous results.  But the stim that is implanted is different than the trial.  Having not such great luck.  It is in the BURST mode so every few days I tweak it up higher to see if I can get some positive relief.
    • johnbuck73
      johnbuck73 DJ1976

      Posted

      Hello DJ have you found your happy sot yet? I on the fence with hf10 and Burst not sure where to go.

      any feedback is appreciated.

       

    • DJ1976
      DJ1976 johnbuck73

      Posted

      No John no positive results.  We are currently running two programs simultaneously.   One program 12 for the back pain and the new program 13 for the wrap around hip down leg pain.

      not working.  Seriously thinking of getting the stimulator out totally.

      I wish you only positive results.

    • claudia_58332
      claudia_58332 carol78519

      Posted

      Is the battery very uncomfortable? I’m scheduled for September and the size of the Nevro battery  looks uncomfortable.. Is it very noticeable??  Could use some help deciding 
  • Silentrumor
    Silentrumor

    Posted

    Hi Carol and allbiggrin

    The tech and I decided to leave it at the 3 level for now and it is doing great for most of my leg pain and about 65% on my low back pain.

    Did you notice any pain in your biceps, like shooting pain?  I'm having that since the surgery...this was not what I expected.  The Nervo device is not suppose to have the tingling sensation as it is the new and improved SCS.  I had not heard of the St. Jude device before. Did you ever try the Nervo HF10 before?

    • carol78519
      carol78519 Silentrumor

      Posted

      No, I didn't have any pain in my biceps.  Shooting pain makes me think it's related to the nerves.  I think you should inform the doctor who put in the trial.  

      It's good news that you do have some pain relief.  They say that if it takes away 50% of your on, then it's a success.

      I had the implant done in Texas.  I think that the doctor preferred the St. Jude product.  I had never heard of the Nevro since I moved to Las Vegas.  My pain doctor loves the Nevro!  Carol

    • Silentrumor
      Silentrumor carol78519

      Posted

      Oh boy Carol, that setting didn't last long.  I tried other levels and programimg.  Just as I brlieve I found the right settings, I fell and fracture my right ankle in 2 places.  I kept the same settings on the Nevro. I'll have to weight to see if it is all good.  Thanks a bunch.

  • jermarsala
    jermarsala Silentrumor

    Posted

    I am in day 3 of the Nevro trial i have tried all 3 programs at 10khz so far no luck with my leg pain. I have burning, cramping, pins and needles in my rt leg. it has seemed to help my low back pain. I have seen many drs and each has a different diagnosis. Meralgia Parastetica, lumbar compression, transverse myelitis. The nevro rep plans to reprogram tomorrow to the lower frequency of 1200hz. has anyone had a similar experience? thank you in advance.

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