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"NEVRO" scs - the story so far.......

Hi to you all.

I have received a letter advising me that the permament implant of the Nevro scs device is 'provisionally' scheduled for Monday 21 January - which is very quick for the NHS. I am not complaining and, all being well, will be more than happy to undergo this [relatively] minor operation.

However, I have not fully recovered from the first operation on 3 December (where the electrodes and connectors were fitted, ready for battery implant later on - all the groundwork was done on this first occasion). I didn't realise how painful the first operation would leave me afterwards. It felt like my insides had been turned over - it was quite unpleasant. The surgeon actually said before I went into the operating theatre "I don't think you realise how big this surgery is going to be". Too right I didn't. I thought it would be a breeze. Perhaps it's because I'm getting older and therefore more cranky in my old age, but this is the 5th spine operation I've had and, with each one, I've noticed that the recovery time takes that bit longer and the pain levels are that bit more 'sharper'.

Anyway. The trial went pretty well on the whole. I couldn't feel any vibration/sensation at all when it was switched on (I left it on continually for 7 days). I went through all the programmes as suggested and couldn't believe the device was actually on - cos I couldn't feel it. Still, the results were encouraging - it totally got rid of my sciatic pain on my right leg and helped to reduce the back back too (apart from when I had a bowel episode - my back pain always increases then). The Nevro did not, unfortunately, take away any sacro-iliac joint pain (bilateral), but I wasn't expecting it to if I'm honest.

A good thing about the Nevro is that, because there are no vibration sensations to be felt, it can be left switched on all the time - even when driving etc. The only time they recommend you switch it off is when you go through customs (x-ray machines) at airports - and preferable ask to be searched with a hand-held 'wand' instead of walking through their x-ray machines. Also, if you go through the security posts that are situated at the front of big high street stores, they usually advise you to rush through the middle - and not linger beside them - as the magnets could affect the device.

However, and this is weird, although the operation site (there were 3) all healed very well and the drains were taken out - even though I had lots of 'leakage' from one site in particular which stopped after the drains were cut - I have been on antibiotics for the past week because of a 'soft tissue infection' on my spine.

It started a couple of weeks ago where the area became firey hot, itchy and swelled up in the evening as I was resting my back. It's better this week than it was last week, but I had to have another course of antibiotics yesterday when I saw my local GP (again for a further week) and also a blood test yesterday - to check the 'infection markers' - whatever they are.

Hopefully, I will be able to shift this infection before Monday 21 January when I'm due to have the last operation. I feel personally that I don't have to inform them because they are NOT going into the same site on my spine (they've been there, done that). No, they are going in through my side, where the connectors are, and will channel the leads around to my abdomen, where they will permanently implant the Senza battery - or something like that.

Unfortunately, I'm still off work, which is frustrating, but there's nothing I can do about it. I've seen my occupational health doctor who confirmed I was not fit enough to work at the moment. My job is still on very shakey grounds as it is supposed to finish at the end of March 2013. Of course, if I was working, then I could have built up the role by now, but it must be difficult for my manager to fight for funding when there is nobody in post.

Further to this, I received from my manager a notification for a completely different job last week via email - so I think that says it all. I always knew the job was temporary, but I was keeping everything crossed that it would be extended past 1 April.

Oh well, I cannot win them all. The most important thing first is to look after my health (so the occy health doctor says) and having the Nevro spinal cord stimulator fitted will hopefully bring some welcome pain relief for the foreseeable future, please G-d.

After I've had the implant, I'll come back and let everyone know how things are going. However, I've only got a 'provisional' date, so this may be postponed by them at any time if they have other emergencies to deal with in the menatime etc.

That pretty much sums up my Nevro experience to date. Roll on 21 January (if all goes well).......
SUE
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 !!
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Comments

  • If you cant feel anything how do you know its on ? Does it have a seting where you can turn it up so you would feel it ?

    I have the medronic scs and you can set it at diferent levels to feel it very litle or feel it a lot ,
    I never heard of a scs where you would feel nothing with each program as you would never know if the leads are making the connection or not ,

    I can leave mine on forever also if its turned very low seting and you barely feel it so you can drive with it on,
    So i am just wondering how you know its working if it cant be tested to make sure leads are in place and all is conected to the unit ?
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I've been following along as you under go this new endeavor. I'm interested in hearing the answers to Alex's questions. I know you said it uses a lot of power in a previous post and you have to charge everyday. How long does it take to charge the battery? What is the life of the battery?

    B.
  • To answer your question (as far as I can and from my understanding) - the Medtronic device, for example, has an output of electrical sensation that allows you to feel the vibrations - therefore you know it is on and working. However, the new Nevro Senza device operates on a much higher frequency - approx. 10,000Hz - and therefore it's like 'white noise' which cannot be felt, but is there nonetheless.

    What is the frequency of the Medtronic device - does anyone know?

    I will know it's working because it will hopefully reduce the amount of daily pain I experience in both leg and back. The Medtronic, as far as I know, is only recommended for leg pain and doesn't do so well with reducing any back pain.

    I haven't had the device implanted yet, so cannot answer questions about how long it takes to charge. I do understand though that it is better to charge it up on a daily basis, but do not know how long for.

    Because of having back and leg pain for quite a few years and failed back surgery I was recommended for this new device by the neurosurgeon (he said I was not a suitable candidate for the Medtronic device). It's new technology here in the UK and I think the Nevro device itself has only been used since April 2012. I cannot find any more history going back any further than that (in fact, there's not alot of information about it anywhere, which is a shame). The hospital where I am having it done has only done about 3 so far, so I consider myself very fortunate to be offered this scs in the first place.

    I have been told the life of the implanted battery is 8-9 years. Obviously in the meantime, the electrodes could migrate, the battery could 'flip over' and other elements may affect the life of the device - even rejection by the body. I'll have to be particularly careful not to make any sudden movements (like twisting, stretching etc) and, as I said before, to be careful of going through airport x-ray machines, not to have any MRIs in future, and shop security posts.

    I hope this update helps a little bit to answer some questions.
    When I know more myself, I will let you all know.
    SUE
    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 !!
  • try4smilettry4smile Posts: 33
    edited 01/21/2013 - 9:41 PM
    He noted that with the use of conventional spinal cord stimulation, if paresthesia over the lumbar dermatomes can't be obtained, the pain can't be treated successfully. "This device

    changes that paradigm. Besides providing sustained analgesia, it avoids paresthesia, and that's a major advantage," he said.

    There were a few adverse effects noted with use of the device. Two patients implanted reported nerve irritation and 1 reported the development of a hematoma, Dr. edit said.

    The device does have a technological drawback, Dr. edit said. "Since the stimulation is on 24/7, it requires a significant amount of power. Because of that, the patient has to plug in and

    recharge the battery every day." However, he said, none of the patients in the cohort complained about that limitation. "They regard it as a good deal, I think."

    Dr. edit emphasized that the data he presented were preliminary. Even so, he said, "We think the device is a significant advance in the treatment of lower back pain because


    conventional spinal cord stimulation has been around for decades and it's never produced the quality of pain relief that we've seen in these patients," he sa



    Post edited to remove name of medical professional and or facility. by The Spine-Health Moderator Team




    Herniated disc C5 C-6, DDD, Fibromyalgia, Nerve damage both arms, Disc Decompression, SCS 2010, Si joint pain, many epidurals, mri's, trigger point injections. Nerve conduction tests, RFA 11/28/12, RLS
  • try4smilettry4smile Posts: 33
    edited 01/21/2013 - 9:49 PM
    To me. Confusing. It must be way more powerful than my medtronic to have to charge it everyday. I've gotten quite used to my buzzing. Just thought I'd share some of what I read just by Googling Nevro. It said if it helps, then the patient gets a controller to turn it up or down. You would almost have to feel...or UNfeel...lol that for yourself to believe it, huh?
    Herniated disc C5 C-6, DDD, Fibromyalgia, Nerve damage both arms, Disc Decompression, SCS 2010, Si joint pain, many epidurals, mri's, trigger point injections. Nerve conduction tests, RFA 11/28/12, RLS
  • Hopefully your op to implant the Nevro happened last Monday as planned SueD, how did it go and how are you feeling? Updates will always be appreciated as I'm hoping to be accepted for the trial later this year, I'm desperate for something to work - main problem for me is what little remains of my L4/L5 is up against the nerve.
  • Unfortunately, my planned operation last Monday was cancelled due to the snow. Whenever it snows in the UK the whole country grinds to a halt. There I was, in the cab, on my way to the hospital when they phoned to say they had had too many emergencies (broken legs and arms I suppose) and therefore cancelled my op. It cost me 30 quid to admire the snowy scenery, but thank goodness, I was still in the cab - otherwise, I would have been stranded there with no means to get home.

    I have another date of Wednesday 13 February now, so hopefully it won't get cancelled again!

    I'll put an update on the forum after I've healed etc.

    I hope you get accepted onto the trial - are they offering you the Medtronic or another device?
    SUE
    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 !!
  • Hi Sue, I'm hoping to have the Senza as my pain is in my back, not legs. Hope ther's no more snow and your op goes ahead this time.
  • Hi Sue, It's the Nevro Senza that I am hoping to have fitted, as I have back pain, not leg pain. (nearly no disc at L4/L5 and other damage. Hope we have no more snow so that your delayed op goes ahead.
  • Wylye CodgerWWylye Codger Posts: 8
    edited 01/30/2013 - 11:43 PM
    looks like I posted my reply twice - having problem with my less than smart phone today, or maybe it's just me after another sleepless night.
  • SueDSSueD Posts: 545
    edited 02/04/2013 - 4:16 AM
    From what I understand, the Medtronic device works on leg pain (e.g. sciatica), but the Nevro works on both Back and Leg pain - and you cannot feel it either, which I'm not sure is a good thing or not. You don't have to turn it off when you drive (like you do with the Medtronic) and, hopefully, you'll know it's on because the pain will be markedly reduced. Oh boy, I do hope so.

    Only a week to go. Mind you, the weather peeps have warned us that we may get some more snow again this week. I can live with that, providing it's all gone by next Wednesday.

    Wylye - how far are you progressing with the Nevro trial? Have you gone through all the required appointments yet, i.e. to see the clinical psychologist (to make sure you are a suitable candidate psychologically) and the surgeon (also, to make sure you are suitable to receive this scs device).

    From my experience, there are many hoops to go through before you even start the trial (where they insert the leads into your epidural space), so I wish you luck that it all goes smoothly for you.

    Keep us posted with your 'journey' - I do dislike that expression, but it's apt at the moment I suppose.

    You all take care xx
    SUE
    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 !!
  • I'm not even due to have my first appt until August, so a long way to go, but I already use TENS and TSE, and am due to have the nerves burned in a few weeks time (having had facet joint injections). I'm also on diazepam, though the GP said it would only help as a muscle relaxant I've since read that it helps with the nerve pain transmission, which seems from my recent experience to be true. All the best for next week.
  • I have been trying to look for further information on the Nevro, without success. I have the booklets that were given to me at the biginning of the trial, but there;s nothing scientific.

    To clarify, I was 'awake' during the whole procedure to place the leads - not something I wish to repeat, especially when they prodded me to make the channel to my side where they placed the connector. Ouch!!!!

    Whilst I know little about the device and any supporting success they might have had with other patients, I do trust my pain management consultant and the neurosurgeon (who said I wouldn't benefit from having the Medtronic device) - so I don't think I've got anything to lose by having it permanently implanted next Wednesday. Fingers crossed I don't get cancelled again.

    Thank you for posting above. A little knowledge is better than nowt. I'd be interested to read anything else you might find, good or bad.

    SUE
    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 !!
  • waltfwwaltf Austin, TXPosts: 18
    edited 02/12/2013 - 6:29 AM
    The Nevro Sensa is currently undergoing a 'comparative' trial in the US. This is a trial where some % of the patients get the Sensa unit while the rest get a 'currently commercially available' unit (i.e. Boston Scientific, Medtronic or St. Jude). The study is to see if the Sensa is 'as effective' as these other units.

    The Sensa unit does operate at up to a frequency of 10,000Hz while the 'other' units operate up to about 1,200Hz. Apparently this higher frequency has two major benefits; Far less sensitivity to placement of the leads (they can just place the leads under fluoroscopic guidance - no need to 'awake' patient during surgical procedure) and the therapy does not produce paresthesia (i.e. no 'buzzing' or 'vibration' felt, just pain blocking).

    You can see both the patient and healthcare provider literature for this device on the 'international' versions of their web site (nevro.com), but not on US version. The system, like it's counterparts, has a trial phase before a permanent implant and also has various styles of leads (paddle and percutaneous) and multiple channels (up to 8, I think - at least they have an 8 contact lead).

    What is not mentioned is whether the stimulus is constant current or constant voltage (Boston Scientific and St. Jude claim constant current is better at adapting to impedance changes due to scarring) or whether (if constant current) there is a separate current source per channel (like Boston Scientific).

    Will post more info if I find it :)


    UPDATE on 2/12/2013:
    I have been contacted by Nevro (I had sent them an email requesting consideration as a patient for the above US trial) - currently they are 'on hold' in accepting new patients into this trial until they have finished review/analysis of 'preliminary data' from patients in the trial.
    As for myself, they said they could not include me (if/when they continue enrollment) because I was too far from the closest Pain Center they are using in my area (I am in Austin TX and nearest Pain Center used in trial is in Houston, TX). Distance is an issue because of the need for frequent reprogramming (required for any brand of SCS, not just Nevro).

    So, I will see my PM doctor in a few weeks and pursue the Boston Scientific IPG (I believe my PM does both St. Jude and Boston Scientific). From my research I think that the Boston Scientific IPG is better because of having multiple current sources (one per channel) instead of sharing one current source for all channels (as St. Jude IPG does) - the reasoning is that if the Impedance (electrical resistance) changes differently from one channel (contact on lead) to another, and your doctor / IPG rep. wants to stimulate multiple channels simultaneously, having a current source per-channel allows the IPG to better deal with this Impedance difference in multiple channels.
    FYI - I am an electrical engineer, so this whole field of Neuromodulation is of interest to me :)
  • I have been on the Nevro Senza for the past 9 months...Its truely been amazing...Had 2 failed back surgeries and constant numbness in my leg....Now very little pain in back and the leg has no pain...I still get some numbness when I stand in one spot for a long time but overall, very happy...I run 3-5 miles everyday without an issue, weighlift and bike a lot...Im 68 years old and never felt better..Can contact me for any issues you experience or if thinking of implant..Can help out....Rick
  • LizLiz Posts: 7,900
    This is an old discussion the poster has not been on the forum for 3 years so I am closing  it

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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