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NEVRO - It's IN, it's working and i can SIT DOWN, YAY!!!!

It's only been a couple of days. I had the Nevro SCS device permanently implanted on Wednesday 13 February.

I am very sore from the operation, but the very good news is that I actually sat down on our sofa today, in the lounge, with my husband, for the first time in months. I sat there for the whole afternoon/early evening and whilst I was sore, I didn't have any leg pain and the back pain was markedly reduced. I would say that was a brilliant result, wouldn't you?
The Nevro hasn't helped with the sacro-iliac joint pain (in my butt), but 2 out of 3 is good and I'll take whatever i can get.

I charge the battery up for one hour, each evening, and then it's on 24/7.

The surgeon saw me just before the operation. I told him that I did have a soft tissue infection after the first operation on 3 December. He wasn't very happy with me because I didn't let him know. I said it was OK cos the local GP prescribed me antibiotics, which took the infection away (it took 2 courses, but I didn't mention that). Anyway, he was very insistent that if anything like that happens again, I MUST let them know immediately.

I didn't realise, of course, that even a small infection could mean bad news. He explained that if the infection had got into the spinal area where the leads are placed, it may have been permanent. If it gets the opportunity to take hold, then they cannot get rid of it. He would have got me into hospital straight away to have high dose intravenous antibiotics administered immediately. It might have necessitated him taking out all the hardware too. I was shocked, I must say. I have promised to let him know immediately if there is a problem, however small. Obviously, I don't want to jeopardise the effectiveness of this Nevro as it seems to be working for me and I would run screaming out of the hospital if he tried to take it away from me now!!!!

I just thought I'd mention this in case any of you are having spinal cord stimulators, whatever their make, so that if you get any problems with infection - let your surgeon know asap.

Thank you to those who have sent me a PM message - Spine Health forum is very supportive and the members understand our problems with chronic pain, and all it entails, like nobody else!!! Thanks alot guys and gals xx
2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!


  • Thank you for the update. I'm glad yoru results are smashing so far. Sitting like a normal person is the one thing that I still am unable to do even with my stimulator. My legs will become quite painful after about 10 minutes, therefore I sit in a reclined position most of the time.

    Keep us posted on your results.

  • Be very careful! Anyone hear about Mel and her infection?
  • Wylye CodgerWWylye Codger Posts: 8
    edited 02/16/2013 - 8:26 AM
    Really pleased to hear your news Sue, well done, and I now also realise how lucky I was when I had an infection after I had a Wallis implant and it was only dealt with locally. Looking forward/nervous about seeing my possible Senza surgeon for the first time on Friday. What's the psychological testing that people talk about as well ahead of these implants?
  • I cannot believe I didn't ask it myself - or that the Nevro representative didn't volunteer the information, but does anyone know if the Nevro Corporation provide people with a "Patient identification Card" for use at airports - so people with scs implants can request a hand-held security wand and not have to go through the walk-in xray booth.

    I know some manufacturers do provide a credit card sized ID card and I think it is important to have something official looking that fully explains that the scs device may set off alarms. Also, in large department stores where they have very sensitive magnetic posts at the front of stores - I believe we must walk through the middle of them, very quiickly, so as not to set them off.

    I would die with embarrassment if it happened to me.

    As for the psychological testing - I think the clinical psychologists just need to make sure that you are mentally aware of what the device is, how it works, how it might impact on your life, what you expect to achieve by having the trial, how it impacts on your family life and work situations etc etc.

    Obviously, if you go in and say everything is wonderful and you experience no problems whatsoever, then they would not recommend you for the trial. But if having chronic pain affects your work-life balance, your mood, the need to take medications that might affect your concentration levels, and that hopefully if the trial is successful then you could consider reducing the pain meds with support from your doctor, you would be able to hopefully do the things you want to do without having to rely on other people all the time, or to be independent, have a better quality of life and to be a better/more effective participant at home and at work, etc. etc. I think you get the gist.

    I have only given you a tiny bit of the things said at my consultation - I was in there for nearly two hours and I told it as it was, warts and all, and was extremely honest with them. You have to be.

    Good luck on Friday - will you post something in this section (SCS) and let us know how you got on?
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • AWSOME!!!! Glad you are haveing good results. NICE to be more normal without constant pain.
    How much is your pain reduced?
    Where is your pain and what kind do you have?
    Courious cause I am getting set for trial run, I think you have answered in my thread...
    Such great new 4 you!!!!
    Please keep us posted
  • Sue
    Glad to hear its going well and its working. I hope you stay around for a year or more and keep us updated.
    It will be a year or more before us in the states will hear much about the trials they are just starting here.
    When I was told it had to be charged everyday I was thinking that's not so good as my medtronics takes about 6 hours to charge when its real low but a hour a day would be worth it. Saying that even 6 hours a day would be worth it LOL if it works. Information is hard to come by here on your unit so anything you have to say will be followed..

    Reesemay are you in the States or over seas. The US is just starting the trials here and its called experimental.
    I think three people have tried it here so far. Its a differant type of SCS. Its made here but we can't have it yet.
  • Thanks for the advice Sue, all applies to my situation. I haven't been able to fly for about 7yrs but I will try to remember to ask about the card.
  • Nigel BNNigel B Posts: 2
    edited 09/09/2015 - 9:07 PM
    Hi Sue

    My partner has had her pre op consultation to have the Nevro Spinal Cord Stimulator fitted on 2 March initially for a trial period and then if it is successful, permanently. I am really concerned about how painful this operation will be.

    Kellie, my partner has undergone 3 operations on her spine -nucleoplasty and fusion surgery twice, each time she has finished up worse than before, I really don't want her to go through another agonizing operation. The first fusion surgery she underwent at our local hospital left her in a terrible state and she had to have the whole procedure done again two years ago.

    We live in Luton in Bedfordshire in the UK and Kellie is under the care EDIT .

    Kellie was referred to EDIT Wexham Park Hospital in Windsor. I really hope this operation can help.

    Kind regards


    Post edited. Forum rules prohibit the naming of specific doctors.

    My partner Kellie has undergone the following operations on her spine- nucleoplasty and PLIF twice. All of which have failed and she is now waiting to undergo spinal cord stimulator surgery to have the nevro device fitted.
  • First of all - about the ID card for airport security etc. I emailed the Nevro people via their website yesterday and they have answered me already, which was very quick. My hubby found a little paper card inside the Nevro box, which I am supposed to write my own details on. However, Nevro have said if I contact my representative, then they can arrange for a printed laminated card to be sent to me. So, that's good (as my handwriting is pretty awful, so I don't think it would look very professional if I filled it in myself).

    As for pain. Well, prior to the Nevro being switched on, I couldn't sit on our sofa at all - I haven't done for well over a year now. I sat on a perching stool to eat meals at the dining table, or I layed in bed. That's it.

    Since I got home from hospital on Thursday 14 February, I have managed to sit on the sofa all evening!!! Ha! I had to laugh because there are certain TV programmes I have got into the habit of watching regularly (which my hubby cannot abide), so whilst I have watched them in the comfort of the lounge - he has gone upstairs to watch his stuff on the PC. So we're apart anyway. Still, I'm sure it will take a while for him to get used to the fact that I'm back in the land of the living again!!!

    When I finished a days work, I would come straight home and go straight to bed to rest my back. At the moment, I'm off sick from work and unfortunately I'm being made redundant at the end of March. Hopefully, I'll be able to find another job, but to be honest, with my poor attendance record because of my back, I cannot see many employers taking me on at my age (56).

    The Nevro has completely taken away the daily leg pain - either caused by sciatica or scar tissue, or both, I'm not sure which.

    My lower back pain has markedly reduced. Last night, however, it did come back but perhaps I overdid it by sitting for too long in the lounge, I don't know. I woke up this morning with lower back pain, but not to the same extent as I've had before.

    Sacro-iliac joint pain - mostly on the right side - this hasn't gone at all. It has been quite bad this evening and obviously sitting makes my butt hurt that much more. The Nevro does not touch this pain, unfortunately. Still, as I've said before, 2 out of 3 isn't bad in my book.

    It hasn't taken a full hour to charge it up. When it's charging, the device turns itself off when it's finished and I timed it this evening - it took about 40 minutes.

    During the first operation on 3 December, they inserted the two leads in my spinal column, channelled it round to my left side and implanted the connector. That recovery was really sore afterwards, but obviously nowhere near as painful as having the fusion surgery. In this second operation (13 February), all the wiring was already there, so they only needed to make a tiny incision to attach a wire to the connector and then channelled it round to my tummy, where they implanted the battery. The scar on my tummy is about 3 inches I suppose. There is bruising and it is not as sore as the first operation. So it's all good.

    For those of you having the Nevro trial in the future, I would be really interested to find out how you get on. Incidentally, on 3 December, there were 4 of us that started the trial on the same day. However, I have been the only one to have it permanently implanted. I don't know why the others didn't proceed with it. I did ask, but they weren't very forthcoming with the information!!
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • .......... that I would like to clarify something.

    I was under the impression that the 3 other people that started the Nevro trial at the same time as me did not have it permanently implanted for whatever reason. Well, evidentally, I am reliably informed that this was not the case. In fact, it seems that all 4 of us did benefit from undertaking the Nevro trial and 3 have actually gone on to have it permanently implanted (not just me as I had first thought - mentioned in my post above). The 4th person is having it done in the near future.

    I know when you read so many posts that the tiny details may get overlooked, but I didn't want to give anyone a wrong impression about the Nevro scs device. I must have got my wires crossed or am having too many "senior" moments!!!
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • Sue

    How long did they leave the equipment in when you had your initial trial on 3 December? Did they leave it in until 13 February or take it out prior to your second operation?

    Kind regards

    Nigel & Kellie
    My partner Kellie has undergone the following operations on her spine- nucleoplasty and PLIF twice. All of which have failed and she is now waiting to undergo spinal cord stimulator surgery to have the nevro device fitted.
  • Sorry it's taken me so long to reply to your post, but I haven't been on Spine Health for a while.

    The equipment was only in situ for one week after 3 December. It should have been only 5 days but I think the poor weather we had at the time caused the extra delay, I cannot remember now.

    On the whole, I am well pleased with the Nevro results so far. I have a few ongoing issues, one of which causes pain at night and keeps me awake. I found out yesterday it is NOT an infection, so I'm very pleased about that. I was informed it could take time to 'bed in' or perhaps I'm having a reaction to the electrodes, but hopefully it should all settle down.

    The Nevro does not take away the sacro-iliac pain - and if I have any issues with my bowels, then the same old pain comes back in my back/leg with a vengence. The latest episode lasted for about 4 days. I have always had extra pain issues when things like this are concerned, it's been going on for over 7 years now, so I know I will have flare ups every now and again. I'm still taking the same medication and I understand these problems can arise as a side effect. The trouble is, these episodes are not consistent so I am never pre-warned when a flare up will occur. Other than at these times, the Nevro has taken away ALL of my leg pain and a good percentage of the back pain, which is more than good enough for me!

    The great news is that I can sit with my hubby, on the sofa, in the lounge each evening - I haven't been able to do that for well over a year now, so for me, this is a vast improvement.

    The charging of the Nevro device has also settled down now and is averaging about 30-40 minutes each evening. I don't find this a problem at all because I'm usually watching the British 'Soaps' anyway.

    I really hope Kellie gets on well with her trial. Will you let us all know how she gets on as I'm interested to read her progress?

    Take care
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • Thanks heaps for the info I'm about to start the trial in may then have it permemently implanted in July. I'm hoping to get off most of the drugs I'm on(mainly the fentenyl patches) so fingers crossed
  • Hi
    New here
    I had the Nevro Senza trial on the 3rd December, I go back to the hospital tomorrow after doing a week on the trial.
    I loved it !! I'm still quite gobsmacked that it works my daily pain levels for back right leg and right foot always stayed in a 7 to 8 on the pain scale even with all the medication, Now i am sitting with a pain scale between 2 and 3 never had a pain score as low for many many years this device is just the best.
    I will hopefully have the permanent one Jan or Feb.
    Im trying to find out info for the next op does not seem to be much info out there
    The high frequency of the device is great as i feel nothing but reduced pain
  • Im new to the forum.. I am now 4 weeks post implant and couidnt be more happy with my results..After numerous surgeries and epiderals I am pain free in my back and just a slight numbness in my leg but that is going away after finally finding the correct setting...I started waking 2 days post surgery and hopefully can start jogging in 4 weeks..It takes time for scar tissue to form and don't want the leads to move..Im a workout fanatic and cant wait to run again...The trial was a success and waited to 2 weeks after to do implant..Only drawback is every nite charging myself for 30-35 minutes but its a small price to pay for relief.. Let me know if I can help with any of your questions or thoughts..Be well
  • SavageSavage United StatesPosts: 5,476
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