Spinal Cord Stimulation

Hi just spotted your mail, I'm in the uk, had nevro h10 implant 3 months ago.  The trial(10days)went well, this is not working and I'm struggling. Still on same medication, still got leg and lower back pain.  Unable to sit or lie properly because of battery pack.  Switched it off for first time today.  Seems pointless.  Pain clinic next week, will discuss way forward, would like to get rid of it.  Such a terrible waste.  What is your take on it ?

wendy

I've had the Nevro for about 5 months. It's not perfect (it's not suppose to be). The Rep keeps adjusting it. The trial for me, like you, went well. A week ago the Rep had me turn it completely off so we could get a better idea of how much relief it's giving me. My best "guesstimate" would be it's decreasing my pain by 20%. In the test, it decreased my pain by 50-70%.  My battery pack does not bother me at all. I'm very comfortable when I'm sitting or laying down; just when I'm standing or walking am I in pain. Don't give up.  Your Spine area is a very large area. Good luck. Marie

I might add, I'm in the US marie

Thanks for the reply, I'm still switched off, feel more relaxed, that could well be psychological as I have pinned so much faith in this working especially as the trial was text book.  I'm surprised it took much more charge switched off than when it was on?  Apart from the lack of pain relief I've struggled with the implants, my hip pushes into the battery wherever I sit (best description) and the anchors T6/7 press back into chair bed etc. my only advice to date is to put on a stone!  Not quite a quick fix.  Clinic next week 3 month review.  It doesn't work for everyone but it was worth the try and I'm not beaten yet.

wendy

That's very weird. I absolutely do not feel the implants. I don't understand what you mean "put on a stone". When I feel the pain is when I'm walking or standing. I can sit on anything and lay down on anything & feel comfortable. Do you have a Nevro Rep you can contact?  My Rep has been very responsive.  Most of the time we communicate by phone but once we met when I had an appointment in the Pain Clinic at Mayo & Friday he came to my home to do some adjustments.  Just "bug" them. You have some answers due you. Good luck. Marie

Wendy21608,

I was considered a failed SCS of Nevro hf 10 so my pain management doctor was going to try the st Jude's but after I had a shot of steroids in my neck I went down like I was being electrocuted, called the rep nothing from him so I called the Drs answering service and they put me through to a aprn who did not know me or what was going on so shd got snotty and said there's nothing I can do for you not like geez let me get I'm touch with the doctor since you just had that done and he can figure something out, nope I got well go to the er or call the office in the morning cause I can't do nothing for you. I was like I am just a frigging number to u and hung up, do I did some research. My own called Nevro in California and I found out that even though my unit is off there is still current going through the unit when I was lied to by the rep and the dr. I was so upset as I trusted everyone of these people with my livelihood and they lost all my trust unfortunately I do have to have it taken out as they think it's my fusion as it's been over 20 years since I had my fusion done, I'm so scared my surgery is the 8th and than I have to have MRI as with the Nevro you can't have MRIs as they aren't compatible with the machines and I had a cat scan and it was inconclusive to see anything as you can not see anything in a cat scan so fingers crossed that they will be able to see what's going on back there every time I move something makes like a clicking noise and the pain is so bad I can't feel my right side of my face from the steroid injection its numb my arms my legs and back I'm probably looking at another fusion as I have been telling them for 2 years since this stimulator has been in and it's been nothing but pain and noone listening to me, also never went to the pysch exam the push that under the rug all I know is please look into all the units before making a life changing experience I had to have a revision surgery as the first battery was put in wrong pushing out of my back and was right on my pant line I was in bed for 3 months in a depression noone wanted to listen either...just be careful...

Lots of luck coming your way as I can't wait for for Thursday for this to come out and do what has to be done....ugh

Good luck keep us in the loop as I well let everyone know what the find out with me.

Cynthia ( Cindy) USA Connecticut

Cindy

Hi from NYC

I've always had compassionate drs until I met these pain dr's.

2 out of 3 did not care about me at all just a number & money.

In January going to #4, 1 more time with #3 then good bye.

You cant trust anyone till they prove to you they care.

Hope you feel better

Paul

Sorry I'm being a bit 'English' I meant add a stone in weight so I had some more padding round my hips and up my spinal column.  I'd probably add it to my knees lol so it's a bad idea.  Before I had this procedure I only researched the positive blog sites and nevro's own site.  I wanted to use 'mind over matter' sadly I am looking at the possibility of defeat and have come to this site to see however one else is coping.  There are far more of stim users in the US.  You have Reps, we have a nursing team as well as the Consultant.  So our overall gain is not monetary.  I'm still switched off, will wait till pain is bad before switching back on and continue to try.  Trying will not sort my continuing problem with the battery, three months is rather a long time!

my best wishes to all who use this site Wendy 

Paulbklyn,

I hate being just a number and money to pain Drs that have no compassion for you or me that need relief not cockiness and idk's it's like you are the dr not me

Getting so frustrated

Now I have to find a new pain management dr cause my dr isn't taking any Medicare ppo ins or Medicaid REALLY?!? Now who's going to fix my back that he screwed up? I know he did it but he should be fixing it not pushing me to someone else who has to get to now my whole case now ugh so frustrating that they can choose what insurance company they can stay with just needed to vent thank you

Hope you have some pain free days

Cynthia (Cindy) from Connecticut

Hi, I've just seen your mail from the uk would really appreciate hearing of your experience of this procedure, I'm new to it as well and in Essex.

Dear George, I have just had my trial of boston SCS fitted (in UK) for pain in my arm and hand, after 10 operations. .it will be in for 10 days. it has three settings burst, whisper and tingle. the first two you dont feel the third vibrates. if i use tingle, even on lowest percentage it very strongly vibrates right through my body if i move my head so i cant test that setting, whisper vibrates also if i move incertain ways or flex certain muscles,  so the only setting i can test is burst. I am really confused to know how i can really tell if this is going to work. should it more effective on the higher percentages? the nurse said some people find it better on lower percentages - that just doesnt seem to make amy sense.she also said dont worry about trying the other two settings as long as 'burst' works we have enough information to go ahead with e implant. i dont have pain all the time some times its really bad and some times bearable so again how do judge if it is worth going through with the full implant when there are so many dreadful stories around? 

i am really confused and would welcome any advice.

was the full inmplant surgery and recovery much worse than the trial?

people have mentioned wires and paddles - with lots of problems associated with paddles. i'm not sure what is used with the bostom device. i feel the days are ticking away and am no nearer a discissison.  

advice please

I've got the St. Jude with Burst that I've had since Feb 2017.  I had a really successful trial.  My pain doc placed it so I've got the leads, not the paddles, you have to go to a surgeon for the paddles as they have to cut through bone to put those in.  Although, I have read that St. Jude just came out with a slimmer paddle, I wasn't clear though whether that was so they could place that through a big epidural needle or just make smaller cuts in the bone.  In any case, my only horror story was my own doing LOL... I decided to go on Nutrasystem while I recovered so I would have my food delivered, ie not have to cook.  I ended up losing 16 pounds in 5 weeks and my generator fell down onto my sciatic nerve causing me severe sciatica.  I had to go in for a revision of that and have it moved further out on my butt.  But, other than that I am a happy camper.  I tend to keep the thing cranked up higher than my rep likes, but I am a physician and we are notoriously difficult patients LOL.  It's the only way I can keep my hip pain at bay.  I do feel some slight tingles at this level but it doesn't bother me, it is just going to wear my battery down sooner.  Oh well, I like being with as little pain as possible.  So, I hope this reassures you a bit.

Lynn

Hi Lynn, good to "see" you here. Tomtom123 I also have the St Jude with Burst, now Abbott with Burst. I have had mine in around 7 weeks now and I think that I am finally feeling some relief. I'm afraid to get too hopeful because after all tomorrow is another day (I think that Scarlett said that in Gone With the Wind).

I have the paddles and I think that they are the thiner ones but I would never have said that a month ago. The trial hurt like HE double tooth pick, I didn't think pain could be worse than that. Plus the trial was questionable whether it was going to help or not. I told my PM and Rep that it gave me a 50% reduction because I felt that it was my final chance to get any pain relief.

THEN I had the permanent SCS put in, OH MY GOODNESS, now that really, really hurt. I thought that the trial hurt but I had no idea what pain really felt like until I had the actual SCS put in. I would say that it probably took a month before I could even think about my regular back pain because the 2 incisions were screaming white hot pain.

Then this past week I am having a little hope, a trickle of light seems to be filtering in. Even my husband has noticed that I am not complaining about the pain so much. I have been staying out of bed longer in the daytime and actually into the evening hours.

I hope that all of you are able to find some pain relief, we have all suffered more than we should ever had to.

Dianne