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Old 12-22-2010, 11:34 AM #1
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Default details of my new non-buzzing or tingling stimulator

well i am one week post surgery of my new unit and as promised here are the details. I will gladly answer any questions anyone has about this new technology. I am not the best person at writing things but hope I explain it properly for you all.

I am one of the first people in Ireland to receive it but one of 23 in Europe to receive it. It is made my a company called NEVRO

The Nevro system is for patients with failed back surgery or patients with back pain and leg pain. i suffer from Chronic Regional Pain Syndrome and i am the first patient with this complaint to be treated with a Nevro( well that's what they told me).

So how does it work if there is no buzzing/ tingling?•The Nevro System uses a unique waveform that does not cause or require tingling sensation (paresthesia) to relieve pain.


Benefits of the Nevro system are

1.Back pain relief
•Nevro therapy has demonstrated reduction of average back pain by 75% in a study population with a high percentage (86%) of patients with predominant back pain.

2.Leg pain relief
•The early clinical trials show that Nevro therapy provides improved relief of leg pain, as well. And has demonstrated reduction of average leg pain by 90%

3.Designed for Paresthesia-free pain relief
•Paresthesia is considered uncomfortable by 71% of patients surveyed who have experienced conventional SCS2
•The Nevro System uses a unique waveform that does not cause or require tingling sensation (paresthesia) to relieve pain.

4.No position-related jolting or shockingConventional SCS systems are known to cause jolting and shocking during position changes2, as when moving from sitting to standing, for example.With the Nevro System’s unique waveform, there have been no reports of jolting and shocking1.


For me so far one week post IPG install!! it is doing all of the above and more i finally think i will get a chance at my life with 2 young children and hubby having suffered for nearly 3 years now. I did have a trial of a buzzing stimulator a medronics one in early december and yes i did get lots of relief from it but had to turn the unit off lots or turn it up lots. With this unit I have not turned it off once and can feel nothing other than the glorious pain relief it gives.

Can i think of any downsides?
Well if having to charge your IPG everyday is a downside well that's it. they give you a belt so you can do it on the move but as the surgical site is still quite sore i have not tried this. Takes about 45 mins on the programme I am on but when they try to get the unit to work better on one area ie tweaking the programme i may need to charge it for a max of 1.5 hours per day.

Oh yes thought of another downside!! medronics give you a lovely bag to carry all your bits and pieces in Nevro don't but i did point this out to the lovely people of Nevro and I am sure they will change this in the future!!

well that's all for now, I hope I covered enough for everyone and if anyone has any questions please don't hesitate to ask.

Jenna
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Old 12-22-2010, 09:45 PM #2
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Red face That does sound interesting!

Thanks for sharing Jenna It really sounds like a neat device. I am so glad that you have relief from it already. I also have low back pain and leg pain and thats why I got my stim and am hoping these new leads won't move and actually do their job right So, what kind of leads do you have, I wondered if they were like the other stims or if they had to be different? Was the surgery different this time than when you got the medtronic before? This might sound silly but to me when my stim is on (its still off right now ) it feels like my legs are asleep but not in a painful way and I guess that is the tingling, with yours what do you feel? Does your body feel any different with it on or off? I just wondered because when mine is on it helps some of my other medical problems and when it is off my body definitely knows it. Also, are your restrictions the same as with our stim's or do you have different restrictions? I am sorry if those are weird questions but I just think this sounds really fascinating and am really glad that you shared that information with us! Hope you continue to keep getting more relief and that each day gets a bit better! You are also in my thoughts and prayers 's Tara.
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Old 12-23-2010, 01:06 AM #3
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Heart Oh wow

What will they think of next? If I had only waited for NEVRO. Even so, I am happy with my Boston Sci, though its stim is uncomfortable. I am glad to have its parasthesiea effects.

All the best to you!!
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Old 12-23-2010, 01:30 AM #4
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Default And I DO like the Boston Sci Battery Life

Charging is NOT an everyday thing with Boston Sci, so, I guess that is a good thing on my side of the ledger.

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Old 12-23-2010, 01:53 AM #5
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Thumbs up Fantastic Thread!!

Wow Jenna! I think this should be up in the 'stickies'!
This really IS breaking new ground! (at least here in our sweet little forum)

How VERY intriguing! Especially that YOU are the first in your country to become a recipient of this!

Tara asked some very good questions, some of which I was interested in knowing about......especially the leads. Are yours dual leads with 8 electrodes on each lead, as is the 'standard'..?

Where is your battery pocket site?
Did they (I'm assuming) do the Laminectomy to place your leads and if so are they called 'paddles' ?
Since you were in the hospital 12 days, I'm assuming you had the more involved surgery technique.
Were you 'awake' during the placement of the leads?
What are your main post-op restrictions?
Do the Reps indicate if lead migration is a risk factor?

Ok, , I guess I've bombarded you plenty!

Heck, the charging every day isn't something I would consider to be much of an 'inconvenience'....I mean, in the pain condition I was in, I'd spend THAT amount of time each day curled up in bed in the fetal position wishing I were.....emmm.....NOT hurting.

THANK YOU so much for this wonderful information!
And congrats on your successful surgery!

God Bless you and your precious little family!
Rae
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Old 12-23-2010, 02:46 PM #6
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Default Good news Jenna

Jenna its wonderful to read your posts and to see how well you are doing. Imagine its taking ALL your pain away and isnt that just magnificent. Im so intrigued also about this 'buzzless' stim Sounds so techy.....but its doing the job and thats the thing isnt it.....get the job done!! excellent

Dont be too upset with yourself for having down days, as Rae said, yes in hospital you are treated like royalty....well especially in our Private hospitals more like an hotel at times. So naturally when you get home, having been so well in hospital all of a sudden, wallop, you now feel the effects of the whole experience, so its natural. Try to relax into it now and take it handy. Santa will be arriving, AND there is plenty of snow for him and his reindeers/sleigh!!! goodness have you ever seen so much so. We have a foot in our garden now AND its still snowing!!! so I hope that you and your hubby and those beautiful girls have a fantastic Christmas and New Year.....and keep us updated on how you are doing!!

Jackie
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Old 12-24-2010, 04:20 PM #7
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Default

Sorry for delay in responding but have not had best few days but slowly slowly i will get there. Thanks guys for the questions going to start with Tara's questions first!
and please Tara if you think of anymore questions just ask!!

What type of leads do i have?Same as the ordinary leads but was told i had 16 contact points which i am presuming is the norm 8 contacts on each.

Was the surgery different this time than when you got the medtronic before?
The only difference was with the Nevro system there is no need to be woken up during surgery as the leads are placed under fluoroscopy

with the Nevro system what do you feel? With the nevro system you feel absolutly nothing no tingling/ buzzing

Does your body feel any different with it on or off?


THe unit has not been switched off since i got it so cannot answer that exactly but as they have been tweaking it to cover both my legs some of the programmes have caused my legs to return to the grey skin i used to have or have caused pain to come back in areas that other programmes have relieved and i have found that scarey and it made me realise that this devise is not curing me just treating my rsd or crps

Post OP restrictions
I can drive if i want already although i do not feel up to it yet.
i can leave devise on while i drive as there will be no jolting or shocking from the unit
not allowed to lift more than 3lbs for next 12 weeks to avoid that lead migration!
No sex for 12 week ( won't be a probem lol)
If i want to ever get pregnant again as i have had 2 c-sections i would require a general anesthic next time
THey can switch unit into a safe mode if i did wish to do the above!


Now for Rae's questions!!

Where is your battery pocket site?

Front of my stomach on left side ( had a choice of either front sides of my belly or my bottom)

Did they (I'm assuming) do the Laminectomy to place your leads and if so are they called 'paddles' ?
Since you were in the hospital 12 days, I'm assuming you had the more involved surgery technique.


No believe it or not Rae no paddles I was in hopital for 12 days for
1. had bad reaction with both surgeries to GA which on both occasiions ended up with me having dreadful headache which took 48 hours on each to go.
2. I was meant to come home after first op but dr refused and wanted me to stay in and i think this was because of my two young children and he was afraid i would do more than i should.
3. I was told originally i would be allowed home 48 hours after IPG install but he kept me longer as he wanted to make sure he gave me enough time to recover without the kids

Being honest rae as much as it was sore i dont think i really needed to be in hospital this length but maybe as it is a new unit the dr wanted to watch the results of it a bit more closely


Were you 'awake' during the placement of the leads?No this was done under general anesthic and leads were placed under floridscope so no need to be woken up in the midle to answer any questions for dr.


Do the Reps indicate if lead migration is a risk factor?
i really dont think it is an option in ireland yet for the paddles so lead migration is still a risk factor with this unit.
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Old 01-14-2011, 09:36 AM #8
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Default Jenna where have you gone!?

Jenna just noticed that we havent seen you around the boards for a while. I hope all is well with you and that you are getting on well with your implant.

If you do get a chance to read this, please let us know that all is well

Take care

Jackie
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Old 01-18-2011, 12:27 PM #9
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Default

Wow .. this unit sounds way ahead of the usual stim. Plus you can drive with it on !!

I'm going to have to look for an automatic car if I get one as my left leg is no good for clutch work now.

Am really impressed with the sound of this .. keep updating.
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Old 08-24-2011, 03:34 PM #10
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Default Nevro scs in ireland

Hi Jenna,
My name is Niamh, i'm 22 from Clare! I have rsd in all four limbs...five years now! I had 2 seperate boston scientific scs systems installed in 2005 for both arms and legs. This worked brilliantly and gave me enough relief that i was able to get back up walking again and regain little bit of normality i suppose. Unfortunately, the scs is failing to cover my left foot at present and as hard as they've tried to fiddle with it, it doesn't seem to be doing what it should. After my consult with my dr yesterday, they told me they want to insert this Nevro SCS. and they have booked me in for next thursday. I said yes at the time because they kind of took me off guard. But the more I think about it., the more hesitations I have.
Are you aware as to whether they can carry out the trial period whilst my present stimulators are in situ or does that have to be removed at that time? I am just worried that if they take out this stimulator to insert the trial NEVRO, that i will have nothing to fall back on if it doesn't work for me. At least at present a very small bit of my pain is covered. I am worried that if it fails I will end up back to where i was in 2005!
I would really appreciate your advice as, as far as i understand, you had the medtronic scs before nevro? i may have my facts a bit wrong on that though!
Any advice would help.
Thanks jenna,
Niamh.
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