[michellemo]

Hi everyone
This is my first post here and I'm glad I've found the community of like minded people.
I am interested in hearing other people's opinions of their results after having the Nevro SCS permanent implant.
I am 13 weeks post implant now and I have had a tough go of things so far with little to no pain relief and now feel like I'm going around in circles with my rep trying to adjust programs.
Of course I think it's 'just me' and 'why is this happening to me' so not sure what others experiences are, good or bad and if I'm overreacting at this early stage or not?
At the 6 week post implant mark with not getting great results I was told it could take at least 10 weeks for the results to show but now at 13 weeks I'm still trying to hope that this is going to occur.
I had a fantastic trial period with close to 100% pain relief but with the permanent I'm struggling to even get 10%, has anyone else experienced this.
My SCS is to treat chronic pain in my knee after a knee replacement.
I'm trying to hang in there but feeling a bit alone with it all at the moment.
Would appreciate anyones feedback.

[Rrae]

Welcome!
So glad you found us!
Many people seem to be getting the Nevro but not here in the states. You must be from across the pond? Or down under? Well, you certainly are not alone, so just pull up a chair and stay. This is a wonderful place to get 'real people' talk and that's just what you are looking for.

I'm sorry you aren't getting the pain relief like you did during the trial. Have you gone back to Drs office to get 'tweaked'? sometimes it takes several hit and misses to get it right. As your incision is healing, scar tissue forms and changes which could possibly move your electrode by even a tiny milimilimilameter. Without the 'stimulation' feeling from regular SCS's, it makes it difficult to know where the electrode currents are or if they have moved.
I'm just throwin some ideas in the air, but I really don't know much about the Nevro, so it'll be great when our Nevro people jump on this thread and give feedback.
While you are waiting to get responses, try using the 'search' feature which is located in the bar that runs across the screen. Type in 'Nevro' and it'll bring up posts with prior discussions on this.
Also be sure to check out the 'stickie' section at the top of the screen. It has further info, FAQ's, and other good stuff. I'm not sure if we have any info specific to the Nevro's up there.
We'll have to get some good info to add to the 'stickies' specific to Nevro's.

Check out the thread titled 'Any SCS success stories' started by ladyinpain. Our most recent Nevro-ers are on that thread!
Feel free to jump in and ask questions....

It'll be great getting to know you, Michelle. You've come to the right place full of caring people.

Rae

[michellemo]

Thank you for the reply and useful information, yes I am from 'down under'.

I realize that it's still early days for me after implant but after a while you start to loose that glimmer of positiveness that I had with the trial so hopefully it will come back soon, I'm sure it will.

I will have a look through the areas you mentioned but this is great to put everything into perspective and realize you are not alone, sometimes you think that it 'only happens to you' but you know that isn't true!

[PamelaJune]

Hi there, I wish I had a magic wand for you.

I have a Nevro and I'm 6months post implant. I've had many ups and downs since the SCS implant and on many occasions I have thought the dang thing is not working as good as it could. And yes, that's a true point, it could work better but I have come to accept for me, this is as good as it is going to get and until Nevro finish their development of their paddle version, I will stick with what I have.

The no sensation of buzzing is an incredible bonus for me who was ignorant of the other brands out there until I was post implant. Other brands operate with a constant buzzing sensation that I would not be able to cope with in addition to my never ending lower, mid, upper back pain, the neck pain, left arm/hand pain and this along with the headaches that like to come and torment me.

I have turned my stim off for a few days on various occasions and have been able to notice when I turn it back on the difference in my pain levels. It hasn't helped with the reps changing and I have learned unless you are in contact with them, they will fade away. I have had mine tweaked once with the rep, the rest of the time I rely on using the remote myself and finding a setting that works. I also only have one lead in (couldn't get the other one in) and I was unaware that each of the electrodes on the leads are not all blazing away at one time. Each one comes on only in correlation with the different programmes and level you choose.

Create a pain diary and note your program and level and at the end of that day or throughout the day record your pain scale for each area you suffer pain. This will allow you to develop a picture of what best works for you and you can refer to it at a later stage when you have troubling pain in that area and change your program to suit. Wingy from the UK turns his down at night. I tend to leave mine now but in earlier days I was fiddling each day to find what was right for me.

There is a lesson I learned, our body tells you an area is hurting because it wants you to know, the SCS blocks that signal and so the pain moves to another area to get the message out again. I call pain sneaky, it just keeps on trying and will do until we learn to manage it or, medical intervention becomes even more advanced and something can be done. Each of us are different, I broke my back 3 times, and also had a car accident, some of the damage just can't be fixed anymore than it currently is. I also lived a very active and productive life causing further damage. Would I change any of it? Probably not, life is not life if we live wrapped up in cotton wool.

There are many of us out here with the permanent implant and as Doc has said previously those who are having a good quality of life post implant are not really on these sites. Mainly it's those of us who have not had the longed for release and have time on our hands to turn to these sites. If I was fit to work I probably couldn't contribute as much so I'm forever grateful to the ones that are working and giving on this site. There are some wonderful people on here to meet, each with an incredible story of perseverance and occasional triumph.

Don't give up hope, keep on trying and badger the rep to tweak, test and stimulate the electrodes to get the best possible result. A squeaky wheel gets the most attention. I imagine it will also depend on what state of Aus you are in as to the number of reps available.

Originally Posted by michellemo

Thank you for the reply and useful information, yes I am from 'down under'.

I realize that it's still early days for me after implant but after a while you start to loose that glimmer of positiveness that I had with the trial so hopefully it will come back soon, I'm sure it will.

I will have a look through the areas you mentioned but this is great to put everything into perspective and realize you are not alone, sometimes you think that it 'only happens to you' but you know that isn't true!

[Rimbanda]

Hope it's a better day for you. Can I ask where they placed your implant? How have you been coping with that part of the procedure? I'm midway through my trial with surprisingly good results so far, but it seems your trial worked well too. Keep us informed of your progress, wishing the best for you in finding an answer soon.

Phil

[pooh_ac]

Hi! As one of the many "old-timers" here just wanted to add my 12 cents. Not all of us that have had success have flown the coop. Many of us still hang around. I am a long time nurse I love to help others. I also need the support offered here for other pain issues in my life I have found (and this is my opinion) that when you control the biggest pain others spots/areas that have hurting are no longer masked by the greater pain. Seems that happens quite frequently, "fix" a problem knee and the other one lets you know it has been ignored and it now wants its attention. Currently my SCS covers the original areas I had the massive pain, have even been successful in tweaking it to cover other pain. I have been extremely hard on my body over the years so older injuries tend to rear their ugly heads on and off. Also as my RSD has spread things can be different. I have also had many epidurals and nerve blocks also have had a nerve ablation.I have found as I age that my body is less forgiving, it tends to slap me very hard to remind me I have abused it in the past and it is now in charge
feel free to ask more questions or just chat, (fluff encouraged)
z

Originally Posted by PamelaJune

Hi there, I wish I had a magic wand for you.

I have a Nevro and I'm 6months post implant. I've had many ups and downs since the SCS implant and on many occasions I have thought the dang thing is not working as good as it could. And yes, that's a true point, it could work better but I have come to accept for me, this is as good as it is going to get and until Nevro finish their development of their paddle version, I will stick with what I have.

The no sensation of buzzing is an incredible bonus for me who was ignorant of the other brands out there until I was post implant. Other brands operate with a constant buzzing sensation that I would not be able to cope with in addition to my never ending lower, mid, upper back pain, the neck pain, left arm/hand pain and this along with the headaches that like to come and torment me.

I have turned my stim off for a few days on various occasions and have been able to notice when I turn it back on the difference in my pain levels. It hasn't helped with the reps changing and I have learned unless you are in contact with them, they will fade away. I have had mine tweaked once with the rep, the rest of the time I rely on using the remote myself and finding a setting that works. I also only have one lead in (couldn't get the other one in) and I was unaware that each of the electrodes on the leads are not all blazing away at one time. Each one comes on only in correlation with the different programmes and level you choose.

Create a pain diary and note your program and level and at the end of that day or throughout the day record your pain scale for each area you suffer pain. This will allow you to develop a picture of what best works for you and you can refer to it at a later stage when you have troubling pain in that area and change your program to suit. Wingy from the UK turns his down at night. I tend to leave mine now but in earlier days I was fiddling each day to find what was right for me.

There is a lesson I learned, our body tells you an area is hurting because it wants you to know, the SCS blocks that signal and so the pain moves to another area to get the message out again. I call pain sneaky, it just keeps on trying and will do until we learn to manage it or, medical intervention becomes even more advanced and something can be done. Each of us are different, I broke my back 3 times, and also had a car accident, some of the damage just can't be fixed anymore than it currently is. I also lived a very active and productive life causing further damage. Would I change any of it? Probably not, life is not life if we live wrapped up in cotton wool.

There are many of us out here with the permanent implant and as Doc has said previously those who are having a good quality of life post implant are not really on these sites. Mainly it's those of us who have not had the longed for release and have time on our hands to turn to these sites. If I was fit to work I probably couldn't contribute as much so I'm forever grateful to the ones that are working and giving on this site. There are some wonderful people on here to meet, each with an incredible story of perseverance and occasional triumph.

Don't give up hope, keep on trying and badger the rep to tweak, test and stimulate the electrodes to get the best possible result. A squeaky wheel gets the most attention. I imagine it will also depend on what state of Aus you are in as to the number of reps available.

[michellemo]

Thank you so much for your advice Pamela, it really helps.

Originally Posted by PamelaJune

Hi there, I wish I had a magic wand for you.

I have a Nevro and I'm 6months post implant. I've had many ups and downs since the SCS implant and on many occasions I have thought the dang thing is not working as good as it could. And yes, that's a true point, it could work better but I have come to accept for me, this is as good as it is going to get and until Nevro finish their development of their paddle version, I will stick with what I have.

The no sensation of buzzing is an incredible bonus for me who was ignorant of the other brands out there until I was post implant. Other brands operate with a constant buzzing sensation that I would not be able to cope with in addition to my never ending lower, mid, upper back pain, the neck pain, left arm/hand pain and this along with the headaches that like to come and torment me.

I have turned my stim off for a few days on various occasions and have been able to notice when I turn it back on the difference in my pain levels. It hasn't helped with the reps changing and I have learned unless you are in contact with them, they will fade away. I have had mine tweaked once with the rep, the rest of the time I rely on using the remote myself and finding a setting that works. I also only have one lead in (couldn't get the other one in) and I was unaware that each of the electrodes on the leads are not all blazing away at one time. Each one comes on only in correlation with the different programmes and level you choose.

Create a pain diary and note your program and level and at the end of that day or throughout the day record your pain scale for each area you suffer pain. This will allow you to develop a picture of what best works for you and you can refer to it at a later stage when you have troubling pain in that area and change your program to suit. Wingy from the UK turns his down at night. I tend to leave mine now but in earlier days I was fiddling each day to find what was right for me.

There is a lesson I learned, our body tells you an area is hurting because it wants you to know, the SCS blocks that signal and so the pain moves to another area to get the message out again. I call pain sneaky, it just keeps on trying and will do until we learn to manage it or, medical intervention becomes even more advanced and something can be done. Each of us are different, I broke my back 3 times, and also had a car accident, some of the damage just can't be fixed anymore than it currently is. I also lived a very active and productive life causing further damage. Would I change any of it? Probably not, life is not life if we live wrapped up in cotton wool.

There are many of us out here with the permanent implant and as Doc has said previously those who are having a good quality of life post implant are not really on these sites. Mainly it's those of us who have not had the longed for release and have time on our hands to turn to these sites. If I was fit to work I probably couldn't contribute as much so I'm forever grateful to the ones that are working and giving on this site. There are some wonderful people on here to meet, each with an incredible story of perseverance and occasional triumph.

Don't give up hope, keep on trying and badger the rep to tweak, test and stimulate the electrodes to get the best possible result. A squeaky wheel gets the most attention. I imagine it will also depend on what state of Aus you are in as to the number of reps available.

[michellemo]

Originally Posted by Rimbanda

Hope it's a better day for you. Can I ask where they placed your implant? How have you been coping with that part of the procedure? I'm midway through my trial with surprisingly good results so far, but it seems your trial worked well too. Keep us informed of your progress, wishing the best for you in finding an answer soon.

Phil

Thanks Phil, hope all goes well with you and I'm sure I'm going to see the light at the end of the tunnel soon!

My implant is lower back and is coverage for knee pain after a botched knee replacement surgery x 3.

Had some further re-tweaking last week with still no great results but reps say they will get me there!