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

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

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SueD
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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).......

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alexhurting
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If you cant feel anything how

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 ,

back
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Sue

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.

SueD
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Hi Alex

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 !!

try4smile
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Nevro

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

try4smile
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Sounds Strange

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

Wylye Codger
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How Did It Go Sue?

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.

SueD
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Hi Wylye Codger

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 !!

Wylye Codger
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Senza

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.

Wylye Codger
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Senza

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 Codger
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Sorry

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.

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