[irljenn]

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

[tchr012]

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.

[Mark56]

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!!
Mark56

[Mark56]

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

Mark56

[Rrae]

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

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

[Niamhredd]

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.

[lynny]

I've joined tonight awake at 2am again! I cant believe so many others are out there in a world like mine- 5 yrs medical merry go round, boston scientific peripheral nerve stimulator in with 4 leads still on high dose opiates are soooo frustrated. Thank you all for sharing your stories xx

[Rrae]

Thank you for hopping aboard!
I hope you decide to stick around and share more about your experience.
Are you getting along ok with your SCS? I still take pain meds, which is frustrating, but at least I'm not as bad off as I once was. I get about 70-75% relief with the stim, so I won't complain.
You mention you are still on high-dose meds. Does this mean you don't get much relief from your unit?

It's great to have you! You'll find many caring people here

Rae

[Mark56]

Oh hey Lynny..... I feel your frustration at not gaining relief.... if any at all. After all, if you are still on high dosage opiates to manage pain I am wondering whether you have attained any relief from your unit. You mention four leads were implanted... with me there were two paddles placed and our results are markedly different! Were so many leads used in your situation due to a broad range of application which was attempted, such as trigeminal neuralgia and arm pain or both thoracic and lumbar pain? It just seems to me from an application perspective, the attempt may have been too aggressive to cover more area than is achievable with a single generator---- assuming that is your situation. My two paddles connect to a single generator dosing me adequately from the waist down as my paddle implant is at T8/T9.

I really feel for you Lynny!!
Prayin,
Mark56