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An update on my NEVRO scs .........

Firstly, can I please apologise to those of you who have sent me a private message in the last few months. I haven't visited Spine Health for a little while, so I am sorry it has taken me so long to respond. I started a new job in May (thankfully) after being made redundant in April.

I am actually working for a pain management company here in the UK (how amazing is that - I totally know and understand their business!!!). I am only temporary, for about six months at least, but I am LOVING it. It's true that I am typing clinic letters for the whole time I am working (4.5 hours each day), but I am so interested in what I am typing that it's not like work at all.

As for my NEVRO...... to be honest, I could NOT do the job I'm doing without it. It has enabled me to sit in a good degree of comfort for the first time in years. I feel as if I have got my life back, well, most of it anyway.

I still have big issues with sacroiliac pain (I think), which is now on both sides. It's a right pain in the a**e, literally!! It's a shame that the Nevro doesn't touch this pain, but I cannot be greedy. It's doing a great job dealing with the back/leg pain - I only notice the pain now if I'm doing something I shouldn't ha! As for the leg pain I used to have - it has totally gone now, so I am more than happy with the results the Nevro device is giving me so far.

I last went to the hospital a couple of weeks ago. The Nevro representative takes all the information off my Nevro and it gets uploaded onto their computer. They can tell many things from the info, which is pretty clever. They can tell if I have changed the programme, whether it has been charging ok, whether I have charged it every day and for how long etc. I usually see them about every 2 months or so. I think it's great that their representatives have these follow-up appointments to track my progress and deal with any queries I may have. Very good after care service, I must say.

Anyway, I didn't think anything more after my last appointment, which was on a Thursday if my memory serves me right. Anyway, I spent that Friday working and put in a full day (because I was covering someone who was on holiday for 2 weeks and it was the end of the first week where I had worked as many hours as I could). By Saturday I was suffering with the same old back pain and thought it was because I was overdoing it at work. Sunday I woke up in absolute agony. I could hardly move in bed and it took me ages to be able to physically get out of bed because I was totally stuck. I was nearly in tears as I got out of bed. What had I done to myself? Was it because I had done a little gardening on Saturday morning? Surely not - I hadn't done THAT much because my back was really painful to start with and I wasn't bending at all. I just couldn't fathom what I was doing wrong or how to fix the pain. By Sunday evening, I was taking morphine solution again, which I hadn't needed since the Nevro was switched on!

Also, over these past 3 days since last seeing the Nevro rep, I couldn't understand why my device wasn't charging properly. On that Friday (just after I had seen the Nevro rep) my device said it was full. On Saturday it only took 6 minutes of charge (it usually takes 40) and when I tried again on Sunday night to charge it up, again it said it was already full. But, How could that be when I had been using it for 3 days - 24 hours a day? Very, very strange.

I was in the process of compiling a urgent text message to send to the Nevro rep, as I realised it must have been something that happened during my appointment and so, before I hit "send", I decided just to quickly check what programme I was on. Why hadn't I thought of doing that before? Who knows, but it just didn't occur to me before this time. It was then I realised that my device wasn't on any particular programme at all. A-Ha! That's it. I wasn't sure if it had been switched off (I don't think so), but it wasn't registering as being on a programme, so of course, I changed it back to the one I preferred and which gave me the best pain relief.

On Monday I went to work, as usual, and realised my back pain was so much improved. Thank G-d!!! When I got back home I immediately hooked it up to start it charging. Thank goodness it then took the full charge and I knew it was working properly again because I could feel the benefits. It has been perfect ever since.

That experience proved to me that my Nevro is doing what it is supposed to do. Because I cannot feel any vibrations or anything at all, I have wondered sometimes if it is on, but those few days without it working properly has made me realise I cannot function without it.

I am obviously so glad it's back to it's full potential again and allowing me to sit so I can carry on working.

To anyone who is thinking of trialing a spinal cord stimulator, I would say you have nothing to lose!!!! I now wish I had this Nevro device BEFORE I had undergone awful spine surgery in 2010 (2-level fusion), and a subsequent revision fusion surgery and still suffering chronic back and leg pain thereafter. I often wonder if I had the NEVRO in the first place could I have avoided having invasive surgery? I'll never know now, but I would recommend anyone to be referred to a specialist to find out if they would be a suitable candidate for it. Not everyone can, of course, because everyone's pain is different and with back pain, it could be coming from numerous different problems. But I can honestly say it was the best thing I ever did.

I will always be grateful to the NHS here in the UK. They get a lot of bad press sometimes, but for me they have always tried to find ways to help ease the pain over many years. Ok, some things just haven't worked (like steroid injections, radio frequency ablations, microdiscectomies x 2, fusion surgery and revision a year later - all the conservative treatments and therapies I've had - all through the NHS - have not taken the pain away for any good length of time. The NEVRO is the only thing that has worked successfully for me so far and I will forever be indebted to the NHS and Nevro for giving me the opportunity to trial it in the first place. Afterall, it's not a cheap option (I don't suppose) and, knowing how the NHS is always trying to save money and reduce their budgets etc., they could have said NO at the beginning. Thankfully they didn't.

So, if you are suffering with chronic back and/or leg pain, DON'T GIVE UP looking for relief. I am seeing a consultant anaesthetist on Tuesday (18 June) to try and find out exactly where this butt pain is coming from. I get about 2-3 flare-ups each month at the moment and it's so painful that I cannot walk up the stairs like normal - I have to walk up one step at a time because lifting my left leg hurts too much in my butt. I was told last year from a different hospital that it was probably the sacroiliac joint causing the pain and they manouvred my legs into different positions so I could tell them exactly where it hurt. They explained how having fusion surgery puts added strain/pressure on the next available joint (which is the S.I. joint), but the pain is getting gradually worse and I just want to find out exactly what is going on (i.e. is it the S.I. joint or the hip or something). Once I know for sure what is going on, then hopefully there may be some treatment options available to sort it out. I did have trigger point injections into my S.I. joint a while back, but it wasn't helpful at reducing the pain.

I feel blimming good at the moment. I can sit,YAY!!! I am thoroughly enjoying my new job (and don't want to leave when my six months is up) but at least I know now that I can return to permanent employment in the future without always having to worry about how it will adversely affect my back, or that sitting for too long will exacerbate the pain too much or that I will be off sick more than I am at work (like my previous jobs). Nope. I can be confident that the NEVRO will do its thing and, while ever it is working, it will allow me to sit in a degree of comfort for the next NINE YEARS. Totes amazeballs!!!

One more thing........ if you ever get a chance to go on a pain management course - they are brilliant for meeting lots of other people in similar situations and finding different ways to deal with - or cope better with - chronic pain, whether it's through medication or lifestyle changes or treatments/therapies - I found the programme very helpful for me and I do better understand how to pace myself when doing certain activities now (like driving long distances, gardening, housework and even the job I'm doing now) - I just make sure I don't push msyelf too far. I will stop and walk around for a few minutes before I resume or take a break/go for a walk, I have had to make changes but realise they are necessary if I want to protect my spine for later on in life. Only time will tell.........but I am in a much better place now than I was since 2005 when it all started to go downhill for me health-wise.

I persevered, I got second/third and fourth opinions when I felt other avenues were not being fully explored. I did lots of research on the Internet. I attended support groups and heard what other people had tried and got different tips and advice from many people who dealt with similar chronic pain problems. I attend every appointment that is made for me - because you never know if that one person may have different advice or have different experience of dealing with people in chronic pain or was more up-to-date with treatment/therapies that had worked for their patients before. It was one such appointment when the consultant said there had been trials for a brand new device (NEVRO) and, although he didn't have much data on it, he referred me to yet another hospital so it could be explored to see if I would be suitable for it. Yep, I have been back and forth for many years now - but I am so grateful that that one person had the forethought and knowledge to put me forward. Without him, I know 100 per cent that I would not be able to work right now - or probably for the rest of my life. You might think that is an exaggerated statement to make, but from where I sit, it's totally true.

Good luck to all at Spine Health. I really hope there is a doctor/specialist for you who will make a similar call that will hopefully find a way to relief your pain, even if it is not a cure. It's always worth it to try.

It's been a long time since I was on Spine Health so I hope all the old regulars are doing well and finding ways to deal with their chronic pain too - or at least being able to manage it better.

I do apologise that this post is soooooooo long - as always, I got carried away with it all and, more importantly, because I can SIT now for much longer than I used to, ha!

I would love to read some replies about whether you have an scs and if it's working for you too.
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 !!


  • backbback Posts: 190
    edited 06/16/2013 - 10:00 AM
    Thank you for the lengthy response. I have a Medtronic Stimulator, but have been very interested in you Journey. My PM Doctor and I have spoken about the Nevro and hopefully when its available in the US, I can it give a try. Don't get me wrong, I wouldn't give up my stimulator for anything right now, but the higher frequency in the Nevro sounds promising. I run my Medtronic at the highest rates I can and still only get about 50% relief.

    The grass is always greener on the other side of the fence.

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