Spinal Cord Stimulator

The stimulator trial was pretty easy for me. They put you into a twighlight sleep, then bring you back asking if you feel the sensations based on the programmers request. I was moving around by evening. Unfortunately I had a lead move pushing onto a nerve. So 3 days into the trial things were removed. I did however, just have the permanent one placed and its AMAZING!

I am on my second SCS. This one is the NEVRO. I have had to schedule a second surgery to have the generator moved/relocated. The first Dr. (He did my first SCS) put it in the exact spot as my last one after I told him I need it to go deeper since I could already feel that one. Long story short. After this surgery you can see the battery/generator sticking out of my back, and sitting and laying down is nearly impossible to get comfortable. My next surgery is scheduled for August 22nd with the Neurosurgeon that did my spinal fusion 5 years ago. They are going to place the battery under my muscle this time. Let's hope it works!!

Best of luck to you!!

Jenn- (US Michigan)

I feel very lucky as to the placement of mine. And being small framed it still doesnt show, nor bother me too much. Sometimes I get into my jeep, and I need to resituate some, but obviously that is the nature of having this implant.

I'm sorry you've had issues with yours. But after 3 years of a living hell for me, its one thing thats actually worked out in my favor.

I wish you luck!

Depends on who you get. Study before you do anything. Have someone who has been doing this for long time not someone new to it. Maybe just come out and ask how many he has done and what percentage are successful. My first one yrs ago was not painful just took extremely long time. This year not long but was painful as he pushed extremely hard. I have spine problems now. Unless your pain is intolerable I say don't let them mess with your back! Do the meds they are as safe as poking in your spine I now realize. God bless.

Hi Frank, it happened to me but even the trial only worked for a short while. I got hooked up on a towel rail and dislodged some of the wiring, since then I have had nothing but trouble. I went ahead and had the permanent scs implanted but right from the start I had massive issues. I went through rejection of the hardware, electrocution of my bottom and a constant uncomfortable thumping in my upper legs and back. The stimulation never successfully reached my lower limbs and ankle/foot in particular. I also had huge issues with the battery. It stuck out and hurt like crazy. I eventually had the whole lot removed. I have subsequently had a very new procedure called a dorsal root ganglion scs but that failed miserably as well. VERY depressing and each time they mess about with me my pain just increases. I am now finding I have back pain worse than I have ever experienced and the nerve pain in my legs increases daily. I went through a dorsal root ganglion pulsed radio frequency ablation a few weeks ago and that initially seemed to help a little but now that the effect has worn off I realise in actual fact the pain was getting worse and not better. I might be nuts but I have been talked into trialing a Nevro Senza HF10 scs, my last was a Medtronic. Not sure about it at all but I'm so far in, I can't just back out and say enough is enough. I have to continue to try to find a solution to this horrendous pain I and many others on here experience constantly. It can be so depressing at times and so few folks understand what it feels like. I feel a fraud at times but this pain does actually drive me to tears at times. I wish you well. Let me/us know what happens next and good luck my friend.

That is exactly what I am afraid of. Where do we stop...I am/was so hopeful for anything which would kill the pain and was very excited the trial worked but then greatly disappointed when the permanent didn't.I met with the Boston Scientic people and heard nothing that would explain why it didn't work unless it was a botched surgery and who would admit to that.

At this point I want it removed. That being said,if there was an outside chance they might get it right on the second attempt I would let them try...anything to help kill the pain.

Thank you for your response,

?Frank5464

I see them on Friday to find out

Good luck Frank. Maybe it will just be a case of fine tuning the electronic wizadry? Having a good rep can mean all the dirrerence between success and failure, a good programmer can get three or four differing channels working for different kinds of pain or different situations. The problem I've found is that every operation has just caused more scar tissue issues, which increase my pain. I think I am spine op number 10 now. Crazy! I know one thing, if I could have turned the clock back I wouldn't have allowed anyone within a mile of my spine with a knife!! I would rather have taken a year out of work and laid on my back if necessary to see if the damage might have repaired itself. The again hindsight is a wonderful thing. Stay strong and let us know how things go. All the best Graham

Hey my friend,

Omg! They turned mine on to be like a pulsating or a tingling sensation with the Nevro, please don't do it! I am in so much pain from it I had to turn off stimulator. I read up on the internet that that the pain in your muscles and fatigue from the damage from that experience, the lady rep even said the Nevro wasn't made really to do it but let's try it on you, oh heck no!! I'm am so done! I am really ready to them to stick it where the sun don't shine! I am so upset and hurting because I let them again make me feel like a Guinea pig again, I can't do this no more My back hurts more than ever, had cat scan done, I feel the scar tissue from the battery revision from my back to stomach well the back scar tissue hurts deep inside cause I can't feel on top but I can feel way down it's strange, but now I have more pain than ever, I don't want to see an aprn I want to see a doctor to tell what the heck this thing did to me, now I can lift both my arms I think it's the biceps upper arm muscles are so sore I can't even get comfortable at night no sleep, I wish they would listen to me and take it out!! I'm done trying these stimulators, if you do get it Graham I wish you the best of luck my friend, miss our chats I wrote you a long email and it went into draft and I was wondering why you didn't write back lol that's what happens when you go blonde haha but I hope you find peace soon my friend from across the pond.

Take care

Best. Luck as always

Cindy xx

Frank5464,

I agree, the trial went ok but it got stuck on things so I don't know if I got the real effect of it, so the rep was like well it sounds like you had some relief and i was like I really don't know because it was to short of a trial, I had it only for 5 days I have the Nevro, I just can't stand this anymore now they have it on to get a pulsating or like when your foot or arm falls asleep that kind of a feeling but I couldn't handle it so I turned off stimulator, no more Guinea pig here, I can't take the more pain I'm in plus no sleep cause of the pain, I think these companies are not up front with anyone who has them put in like we aren't gonna find out. Well im in More pain they ever, I hope you find relief somehow or with something, we are all hear to just help you vent or just need a ear, I'm here if you need to talk.

Take care

Best wishes and maybe some pain free days

Your friend cynthia ( Cindy) USA Connecticut

I wish you had the opportunity to work with my programmer from Boston Scientific! He is amazing, and can do soooo much.. it's unbelievable! As he's mentioned, each person being so uniquely different, and experiencing different types of pain...it all comes down to the programmer, and patient! So sorry to hear your frustrations.

Hi cynthia70714,

I am sorry that the scs did not work for you and I do inderstand the need for pain relief. I had my permanent nervo senza implanted 7 weeks ago, the trial went well but because this is my 3rd scs(the first 2 were medtronic) I have a lot of scar tissue. Out of the 3 settings, ony 1 of them seems to give me the most relief and, my pain level went down to a 4-5 from an 8-9 with pain meds. I have had 3 back surgeries and at least 2 discograms and an IDET. I am now, according to my doctors a fully functional, partial paraplegic. I have yet another herniated disc al L2-3 that would require a lateral fusion and would not do anything for the spinal cord damage that has alrady occured. So I guess for now I will choose not to get the surgery unless I begin to experience other problems from the paraplegia.

I was supposed to have my repositioning surgery on August 22. The Dr. that put the NEVRO in set it up with the neurosurgeon, so I called him to confirm the surgery. To my surprise, no I'm not scheduled for surgery, it was for an office visit. I told them they are out of their minds if they think I'm waiting until August 22 for an office visit then on a waiting list for 2 months to have it repositioned. I told them I am in constant pain, that I can barely sit, I don't sleep at night. My work is affected because this surgery was a total failure. So when I go back to my back Dr. Who is my pain management Dr who put this in, I'm going to give him 2 options. Either you find me a neurosurgeon who can see me immediately and do the surgery right away, or you take this STUPID thing out. I'm only 33, and I am losing my quality of life. I'm sick of the constant pain, and always being tired from not sleeping. I'm sorry for complaining here, but it doesn't seem like I have the support at home.

Jenjo683,

Vent! Vent! We all vent on here and get out our frustrations, if we didn't have this forum we would never know that there is so many ppl out there suffering with the same thing when we thought we were alone and noone at home can relate to what we go through, I'm always here I try my best to answer everyone, but we lean on each other for support, I feel like my quality of life is gone because of this and the revision and they promise you that the pain will go away half, when now I have more issues, it's nice to meet you, stand your ground and tell them you need the revision surgery not a drs appointment, so dumb sometimes it took me almost 9 months of complaining and showing them the battery was pushing out of my skin before they set up my appointment,

I wish you relief and answers

Best of luck to you and we are all in the same boat

Cynthia( Cindy)keep me updated as when you get your revision and how you feel thanks!! Try to bare with it stay strong and smile even though you want to cry !

James15716,

James I'm so sorry to hear that, how did you get hurt? And if you don't mind are you wheelchair bound? Because if you are feel so bad because I can walk with limited function, in pain constantly but I should be great full that I'm not in a wheelchair my one dr said I'll be in one by my 40's I'm not 45 and I do my best not to have one, but I do feel like they do not tell us the truth of what can happen if you fail, I've been in pain and missed out of life because of one dr that wouldn't listen to me, I felt bad because my daughter got cheated out of a childhood because I was always on bed rest or having surgeries, I've been like this for almost 20 years now, and if I can take back that awful day it happen, but I guess this is my path that was chosen for me, it does make me a stronger person but I feel like everything is been taken away from me. If you are a paraplegic I shouldn't be whining.

Best regards and hope you true relief someday

Cynthia ( Cindy)

Hi cynthia70714,

Well as for your first question, I was hurt on the job in 94, I was putting an 18 foot trailer on a company truck fo an equipment delivery. Well, it was a total freak accident, the trailer toung had a sliding collar with a flip higned coupling. My right shirt sleve got caught and the trailer slid off of the trailer ball and, pulled me down and to the left and my back popped in 2 places. I found out later that it was L4 and L5-s1 that had been herniated. I went from April that year until September in my first wheelchair, the pain was horrible and my left leg was paralyzed. As for right now, I ended up in on my second wheelchair in 2009 and I just received my newnon this year. As far as the paralysis goes it came on suddenly and before ending up in my chair between Febuary and June that year. I really hope that you can find some kind of pain relief and that you can continue working for a few more years. And if the scs did not work maybe you can get a pain pump or possible get your medication adjusted correctly.

Best wishes

James

James 15716,

Oh I know how those 18 wheelers are, I'm so sorry that happened to you, I can't feel my left leg but I do walk, very carefully, Drs thought I would be in a wheelchair by now, but I just keep pushing myself I got let go after I was working at a company for 3 years because of my back, I did go on unemployment which was in 2008 and I made it with all the extensions the last check and than my disability kicked in, thank God I had to work as my daughter was still in school but I can't believe that job I worked for did that to me and I was up front as I got hurt at work somewhere else and told them, but I'm getting by the skin of my teeth with the disability, I had my revision SCS surgery didn't work in so much more pain, now muscles didn't hurt now hurt, it sucks bad, I see the Dr October 5th to see what hes going to do, so sorry for you having to be in the wheel chair, I'm lucky where I can walk a bit but funny and in pain, I push myself which is probably wrong, people see me parking in handicap parking and I get stares til they see me walk, but I got into a fight with a woman I was in tears, I was like who are you to judge me, you don't know nothing about me, I ended up just sitting in my car til she left.

I hope you are getting some relief

Take care

Cynthia ( Cindy)