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On SCS permanent

Posted , 5 users are following.

cynthia70714
cynthia70714

Hi All,

I've had my permanent SCS from nervo senza about a month now, I feel like I am not getting any relief. I know they said it takes 3 months, I feel very down I'm feeling like its a failure, and I just don't know what to do, I go to the Dr's on Nov. 3rd, just need some comfortable words or something, missing graham, would push me through the tough days, miss you Graham and hoping you are doing OK.

Cindy xx

0 likes, 7 replies

7 Replies

  • Streety78
    Streety78 cynthia70714

    Posted

    Cindy. I know how you feel with the lack of pain relief and it getting on you..... its a long shot but It has worked for a college apparently there is a thing called acti patch advertised it pulses and blocks the nerve signals has a trial for about 2.50 and works for 72 hours as a trial

    . My friend had to drive to Wales and was concerned using this patch was comfortable..... I hope I can be here to help you the way you have helped me so far. I haven't felt anything from below my waist due to nerve crushing in the area where it exits the cord. It sounds weird but I also tried wrakie (prob spelt wrong) and it helped with the emotional and mental side. I hope you'll find some relief soon. Please also keep me updates

    Mark xxxxxx

  • simuppet
    simuppet cynthia70714

    Posted

    Hi, 

    I have a tethered spinal cord which i have had unthered 3 times and again its tethered , I have several other issues all due to my damaged cord .

    As I am getting older my pain increased and i found that nothing helped.

    I couldnt have a SCS as it would cause more damage to me so I ended up having a morphine pump fitted 

    If I tell you that after 20 years of sleepless nights I now sleep like a baby 

    Maybe this is something you could discuss with your Gp 

    • cynthia70714
      cynthia70714 simuppet

      Posted

      Simuppet,

      Thank you, I also have been 20 years of torture, and I feel I did this scs for nothing, its frustrating.

      Cindy

  • colin63763
    colin63763 cynthia70714

    Posted

    Hi cynthia

    i was a patient on the nevro trial 5 years ago when i had it permently fitted, the unit is working great for me still today.

    remember you will still have pain it just not the same intensity ,mine no longer scores 10 it more like 1 maybe 2,

    also remember to pace your life and not over do things and keep doing your daily stretches and exercies as advised by the doctors and nurses , physios this all works in tandem with the unit.

    no exercise results in seized up joints and an increase in pain

    • cynthia70714
      cynthia70714 colin63763

      Posted

      Colin,

      I'm still only about 6 weeks in, but I still feel like I did before SCS. I know I have to take it easy and I'm not done healing, impatient lol hoping it gets better, I hope it starts to feel better smile thank you for the pep talk smile

      Cindy

    • antony_86552
      antony_86552 cynthia70714

      Posted

      my scs was implanted four and a half months now and for the first three months i was worried that it wasnt working as well as hoped for as was still having sleepless nights due to pain and walking was still limited, i have now worked out that if i use stim on level say 2,5 for any walking,general moving exetra and putting up with pain, and use 3.7 only for bedtime i do get some sleep, i have cut down on the morphine by a third but still have pregabalin 300mg. slowly scs looks to be helping, they did say it could take time,buy the way i have had very bad couple of days latley back to pre opp pain levels and was very worried, my fault as did not turn on again after charging, so i know to a point scs is helping,have you tried diferent levels again to get your best results after three mths post opp recovery,hoping for better results for you,

      Tony.  

    • cynthia70714
      cynthia70714 antony_86552

      Posted

      Tony,

      My rep won't let me do my own changing my stimulator, he says that I have to leave it where he puts it. It's frustrating and still in pain. Still hurting alot.

      Cindy

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