Any SCS Success Stories?
 

Hello ladyinpain!
 

Greetings
 

Hi
 

I have had my Nevro Senza SCS for around four months, so still early days and being fine tuned, but so far I am really pleased with it and can generally reduce my pain levels by about 50% by using the different programs and power levels available to me.

Get a little bit miffed with charging every couple of days, but it's a small inconvenience and I am sure it will become habitual in time.

All the best, Wingy

I have my unit for 4 years this August. It's the best thing that has ever happened to me. After going from practically living my life from the bed to the couch I now can get out and about. I have failed back syndrome so my pain is in my lower back and both legs. This has helped me tremendously. I have had some tweaking some too and as the years have gone by my leads have settled in more which means less movement in them. This means I get better coverage too.
Best part for me is the relaxation it brings for me. Before I looked drawn. People told me I looked gaunt. But now I'm told I look so much better in recent years. And that's due to this stim helping me along the way.
There are lots of success stories on here. People from all walks of like and every type of ailment too. So well worth looking around the site and find their stories.
I hope it all goes well for you and that this is helpful :)

Hi Wingy, thanks for your input.
How long does your battery last? The doc I spoke to today said it had to be recharged everyday, which isn't always convenient in my job. I am having my trial next week with the view to having the Nevro SCS fitted within a couple of weeks of the trial if all goes well. Starting to get butterflies about it. :o Look forward to following your progress.

Phil

I normally get 48hrs before i need to recharge, it helps if you can knock the power usage down a bit a night.

I find that I can charge up whilst doing odd jobs around the house no problem, just keep an eye that you are getting a good charge connection otherwise charging can go on a bit.

Good luck with the trial, hope it goes well for you.

Oh and remember that there is a wash in period (delay) before benefits are felt.

Wingy

@Phil
 

Hi Phil, I've got a Nevro Senza as well. In the main I charge every day, I do have mine on 24/7 and some days it charges quicker than others. There are also days when for one reason or another I miss charging, not often mind, but it does happen and it's not the end of the world. So long as you don't let it run completely out of charge there are no issues.

Nevro Senza Battery Life
 

Thanks Pamela & Wingy for your feedback. It's always better to get real life experiences. :) Had a talk to the Nevro Rep on Friday as well and found out a bit more, so now just the nervous wait till Monday arvo. :sunchair:

Trial implant
 

Hi Phil, good luck with the implant. There is a bloke on NT called Mark56, take some time to read his recommendations following your implant. He has coined it BLAST.
B No Bending
L No lifting
A it's an acronym and he had nothing for it, I included for myself ASK for help
S No stretching
T No twisting the body to put on seat belts
Truly the trial implant caused me no discomfort, more it was the frustration of the dang leads catching on things and the removal of the leads also caused no pain or discomfort at all.

Here are some extra suggestions to help you with the trial period to make sure you get the most out of it and also for when you have the actual implant done.

Post surgery
1. Follow Mark56 BLaST really limit bending, lifting, straining, stretching or reaching out and twisting - that includes being careful after number twos...
2. Have a stock of pre cooked or ready made meals in the freezer.
3. Don't stack or unpack the dishwasher, hand wash dishes as you go.
4. Move milk from bottom fridge door to higher point so as to not reach down.
5. Get someone else to clean house, load and unload washing machine, hang washing or put in clothes dryer and fold up on removal, strip beds and remake etc etc.
6. Have a friend or family member wash your hair if you need it washing, don't be tempted to do it yourself as you shouldn't be lifting your arms above shoulder height.
7. Remove anything like rugs or mats on the floor that could cause you to trip.

Once you have the implant done if trial successful, all of the above plus;

A. For the next 8 weeks every time you move imagine you are walking on ice and you want to take all precaution not to slip or fall. It will make you move slower and with emphasis on being careful.
B. Mark off on your calendar when you can begin to do things so you are not tempted to throw bales of hay, prepare celebratory meals, drive long distances, do the weekly shopping or get carried away with exercise.
C. Establish a routine to charge your battery and remember just because you feel good and look good doesn't mean it's all healed up inside....
D. Most of all, take your time and enjoy the recovery and journey back to living a full life.

All us SCS dudes and dudettes are here for you post surgery. Good luck and we will be thinking of you. ::cool:

Thanks Pam for the suggestions and support. I guess I'm getting real ansy about it as it looms closer. Got home from work around 0300 this morning and ended up not hitting the sack till about 3 hours later. Read through Mark56's BLAST and tried to work out how that was gonna work. :confused: Might be spending a night or two in the lounge chair till I sort things out. Still trying to work out if we are in a position for me to take 12 weeks off work after the implant. My PM is away for the whole of July so if the trial is successful it has to be very soon after or not till August or later. If I wait that long I might talk my self out of it. :D:D

Must remember to make a list of questions to ask tomorrow, like how soon you can do what etc.How soon before I can go back to work and what I can do there too. Not a lot in the way of light duties at work for me to do, and I'm guessing climbing up a ladder to get into a loco will be way out of the question. :)

Anyway thanks for listening, this is all an unknown for me so I appreciate the support and help that has come my way.

Phil

Phil
 

Hi Phil,

Take one step at a time mate, see how you get on with the trial and what benefits you have before going ahead with a permanent implant, you don't want to be having all the disadvantages of a permanent unit without any of the advantages.

Sorry, not wishing to put a downer on things mate, but it ain't for everyone, but hey fingers crossed it will be good for you and you can then move onto the next stage eh.

All the best for Monday, oh and by the way, I too had no discomfort with the trial being fitted or removed.

Wingy

Well, I spent my night in hospital and had the machine hooked up this morning and have made it back home safe and sound. Trying not to get my hopes up but after 9 or 10 hours I appear to be getting some relief in my neck and head which were the areas they were targeting. Same can't be said about a few other areas but they weren't part of the plan.

Even my lovely, extremely patient wife say my face isn't as strained as usual. So as Wingy said, fingers crossed and it will be all systems go. I realise it is only day 1, but I'm optimistic that these are good signs. I just have to make it through to Tuesday without doing anything stupid.

Thanks everyone for your support.

Phil

Sounds good so far eh Phil, glad to hear it all went well, see I said it won't hurt... much :-) Fingers crossed for you mate, take it easy for a few days now and rest assured when they take it out it should just slip out without pain, well mine did anyway.

Try and keep a journal of your pain relief, gives them a good idea for electrode placement if you go for a permanent unit.

All the best, Wingy

...................:deadhorsebeat: :deadhorsebeat: :deadhorsebeat:

Yes, it was completely the horse's fault. :D ...
Plus the good coverage I was getting combined with my post op pain meds, had me convinced that the rules didn't apply to me so I took the 'BLAST' rules for granted.

Anyway, all the best to you Phil for a good outcome and a speedy recovery.
I like what Wingy said about keeping a journal. Great idea!

Rae

Check up day today. Off to see the PM and the Nevro Rep. So far things have gone fairly well. Most (to the point of nearly all) of the pain in the neck has gone and most of the headaches are gone too, but the head still feels a bit woolly. The restrictions certainly keep you on your toes, it is so easy to just doing things like you used to. The Nevro Rep suggested wearing a neck support as a reminder and that seems to mainly work. :-)

My Lady has been an absolute rock, and I know that if we go ahead with the implant, she will be the only way I make it through the 12 week period.

Hope everyone's day is going as well as can be expected,

Phil

You sound great
Heed to the warnings
Do
N o t h i n g
Like you said stupid
When permenent unit goes in
Let them leads fuse
Be patient
You sound great
and to be a success story
in the making
Lets keep it that way
I wish you much happiness with
your loving wife
Be safe
Me

Decision Time
 

Check up went well. Nevro Rep was happy with the results and also pleased that I had done nothing to shift the wires. PM was also happy with the results, just have to wait for him to take the wires out on Tuesday. I'm penciled in to have the implant in the latter half of June, so we only have a little while to make up our minds. As fantastic as the last few days have been, it is still a BIG decision. More consultation and much thought over the next few weeks.

Phil

Good pain relief eh Phil... nice one mate!

The more benefit the easier the decision I reckon, it makes going for the permanent implant a more confident and positive experience eh.

I remember saying to my consultant after the trial; "but what if the implant doesn't give me the same benefit?", he said; " well we will do our best to tweak it till it does, failing that we will take it out again and think of something else!". All sounded fair enough to me mate... nothing ventured and all that stuff :winky:

Wingy

Wires came out yesterday and I reckon within 6 to 8 hours things started to head back to normal. Which I guess proves how well it was working, but I was hoping for some sort of overflow effect for a day or two. Oh well, that's life. :)

Initially I was pencilled in for the permanent unit in a few weeks but decided to fob them off a bit. I'm half way through training a driver at our depot and used that as the excuse so I could complete his training. I mean after all this time, what's a few more months. :o After a long talk with my Ever-Loving last night, it was decided to see if the slot was still available.

So the upshot is, I'm booked in for the 23rd. No turning back now. :cool: Did I mention the fact that I am allergic to pain? :D:D That was part of the reason for putting it off I suppose. Afterall, what I have now is a "known" whereas having an implant installed is very much an unknown. If I have learned nothing else from the forum, no two implants seem to go the same, or work the same. Anyway that's my gripes for the day, hope everyone is feeling as best as they can be.

Phil

You go Phil
A success in progress
As no two fingers are alike
Your mind works with good outcome
A successful work in progress
Amen

Hang in there
 

Be strong and really and truly follow all the suggestions made in this site post implant and you will be well placed for a successful outcome. You are having the Nevro implant so it is percutaneous leads and no paddle implant. That in itself means you will have far less pain than some of the others with other brands. The paddle means you have a laminotomy where they scrape out bone to implant it and it, like a laminectomy hurts like hell. The leads slide up the spinal canal in the same place you had the trial ones so it should go ok. Are you under a PM specialist or a neuro?

Phil, you seem to be overlooking one of the main advantages of having the permanent implant, allow me to enlighten you: ;)

You have to charge the IPG every so often, i find this the perfect opportunity for the following:

I would love to go to your mother's, but I have to charge up!

Oh course I want to take you clothes shopping, but I have to charge up!

No I don't want to sit here drinking beer, but what else can I do, I'm charging up!

Washing up dear, no problem, I'll do it as soon as I finish charging up!

I think you get my drift mate :)

Wingy

You crack me up
 

Wingy, that's priceless. Ironically it is so very true.

I'm not sure about you but lately I'm having trouble getting 2 bars when charging and the 1 bar means it takes forever to charge. I find myself getting frustrated and that blasted beeping when it drops from the 1 green to the flashing orange really can tip me over the edge. Yesterday it took ages to charge and finally I settled in an uncomfortable spot in the sofa but got the longed for 2 bars. Dearly beloved said to me, are you getting lunch anytime soon. I could only imagine I looked and delivered the exorcist head turn (remember the movie) and I'm sure my face must have been a curdled green as I replied "feel free to help yourself in the kitchen, perhaps you could find the energy to make us both something to eat if you can't wait until I'm charged OR you will find yourself eating my charger darling".

I know if I can get a solid 3 bars it charges really quickly, but the 3 are fleeting and seem to only happen when the charger has the lightest of contact with the battery site but disappears once any pressure is applied. Does anyone else have the same frustration. Sometimes I just want to throw it all away.

I do realise my personal emotions are at an all time high because my pain level has increased considerably and I'm cross and cranky a lot of the time as the SCS doesn't give cover in those areas. So if anyone is reading this and thinks the thing doesn't work or is not worth it, it's just me being cranky....

I met a guy in hospital that had Medtronic unit on one side, a Nevro on the other and was trialing a Nevro with a view to replacing the Medtronic, he looked like the back end of a tropical fish tank, tubes and wires all over the place. I would hate to be around him at charging time... he is gonna be one angry dude :D

Know what you mean about the charging lights, it reminds me of that game with the bendy wire and the handheld metal loop that buzzes if you get it wrong, I was thinking of finding the exact sweetspot and sewing the charging coil into a waistcoat so you just put the waistcoat, do it up and it is spot on every time, sounds great in theory but you just know that it is doomed to fail ;)

Actually my IPG is just a couple of mm below the skin surface at the front, (about where you would have an appendix scar), so for me it is not too bad, I tend to be able to get three lights up most of the time unless I am moving around a lot, in which case I wander about sounding like a truck reversing.

Wingy

Another Cracked Pot
 

Thanks Wingy,
That made my day! I like your way of thinking. :-) My beautiful Lady has already thought of using me as an excuse not to go certain places after the implant. Gotta watch these female types, they are devious at the best of times. :D:D

My supervisor at work has been very helpful, which I appreciate, I just finished filling out some forms to send to him applying for leave to cover most of the 12 weeks. Between using Personal Leave, Annual Leave and Long Service Leave, I have it all covered and will even have a little in reserve. That in itself is a relief and will help keep the financials partly under control.

Yes Pam, the plan is to follow directions as much as humanly possible. Over the trial week, Rae even had our grand daughter rousing at me if I went to move the wrong way. I had no choice but to behave. :cool: Asked my Pain Specialist about riding my bike during the latter parts of the 12 week period, and he said fine as long as I don't lift it, crash or turn my head. So I guess that's out too. :( Given that it weighs over 330kg I suppose it might be pushing my luck just a little bit.

Thanks Eva for your positive thoughts, no doubt I'll be needing them after the implant till I get sorted out. Hope your day is going well.

Catch everyone later, I have a run of late shifts starting tomorrow so might not be on line much. Keep well, and stay positive.

Phil

:Thats-Funneh::ROTFLMAO:

Hey! We need to get this up in the 'Stickie Section' with all the other valuable info!!