SPINAL CORD STIMULATOR SIDE EFFECTS

I truly wish you the best. After 6 years of dealing with Nerve pain post op I can tell you doctors do not acknowledge there mistakes and neither will any of there piers, will need to go to another city that does not know those docs. I had similar symptoms with terrible pain at site, burning pain where they ran the leeds down to where the stimulator was implanted. It took years for the pain in the back to get better but has toned down, burning pain where leeds took a few months. Original nerve pain this was suppose to fix is made mildly better but certainly not worth the extra pain caused by implant. Good luck and take notes, be skepticle of all options given to you and again take notes of everything all day.

It is such a rigged system especially here in Louisiana. The code of blue is nothing compared to the code of white. Doctors get to be judged by a group of their piers before you can take them to court. There are suppose to be 3 unbiased doctors which don't happen. Trying to get a doctor to look at your case and state breach of care is impossible because every hospital has a contract to not get involved in law suits, in fact many do not take you for treatment if your problem is post op. I am trying to reach private practice out of state but that has not been fruitful. Other options involve that do this for a living but cost lots of money to get them to research and testify. Because of the damage I now can not work as before and make half of what I was and on the cheap spend $ 300.00 monthly on pain management and meds so been going backwards. Meeting with attorney Wednesday to come up with a plan as I will not let him get away with this. 

Switching to you if the stimulator is causing you pain during use I would not use it and I would be very active in letting your insurance company, the hospital, the doctor and the stimulator company know of your problems. He obviously has the paddles hitting the wrong nerves so based on what I know I would want it removed and see if those pains cause by the procedure go away. Push all this as post op and keep this doctor, hospital, and stimulator company involved. Keep your journal with names, dates, and daily occurances as well as your daily condition.

 

Hi there everyone, I'm new here.  I found you through a good search.  Anyway, I got the SCS (Medtronics) about 6 weeks ago.   I had 3 failed back surgeries and the only two final options they gave me was the SCS or a morphine pump.  Of course, I chose this option.   The nagging pain I had before has pretty much left, which I am thankful for.  However, I now have new pain that is almost worse than what I had before and located in a different place.  It was for my lower back (which again, is better).  The pain I'm experiencing now is in my back where the wires lead up to the spine (on both sides, trial side and permanent side).  It's so strange.  I can't stand long at all, can't sit very long.  When I try to get ready to go someplace, it's excruciating pain getting ready, especially when I lift my arms to do my hair, it just makes it even worse.  The reps keep putting it on a setting where it gets in my stomach and lower back, but it hurts my stomach.  Do you think I just need an adjustment or does the Neurosurgeon need to know? Any answers would be helpful.  Thanks so much!

I meant "Google" Search , not good search.  I need to proofread a little better before pushing send lol 

I had the Boston Scientific SCS permanent placed March 19,2018 this was my last resort, I have spinal stenosis, 2 disk that are minor bulge, and degenerative disk disease.  At first the SCS was working for me, I feel as it’s not working for pain anymore, yes I feel the vibration, but not covering my pain. My battery was placed on the left side near my waist not very low, I’m not liking the feeling I’m having in my upper back where the leads are placed, feels like someone pressing there fingers in my back 24/7  I can’t pick anything up or bend down , cause the leads feel like they’re lifting and pulling. They did a X-ray and they said the leads look fine , and wanna do another injection June 7,2018 I DONT THINK SO 😡 I’ve had 5 injections before my SCS was placed nothing worked so what makes them think the 6 th injection will work. NOPE NOT ME . 

Patricia I’m experiencing the same things with my legs.  Now mine didn’t start until I finished chemo a year ago and I suffered severe bone loss from it.  My bone stimulator has moved itself.  Right now it sits against the right side of my spine just above my waist.  I don’t believe it’s supposed to do this!  When I turn to my left I can feel it and it’s painful.  I can’t walk without my cane but even more distressing is I need a walker just to walk through a mall or any short distance outside of walking through the house etc.  My legs just stop working.  Right leg especially.  I start to bend at the waist and my right foot turns out.  Each time I’m forced to stop makes it more and more difficult to start walking again.  I’m having an MRI tomorrow morning and I’m fearful it will show that my bone loss has compromised my fusion and hardware.  My back surgery, (I’m FBSS, triple fusion, also due to amount of fibrosis I have in my nerve roots), was back in 2009 and I’ve had increasing pain since then.  I don’t know what, if anything, can be done about it.  This bone stimulator is really bothersome now.  And like I said I don’t think it should move around like this.  I’m a bit scared about it!

I have had a Boston Scientific SCS since 2012 . In 2016 I was in the FDA study for the sub perception settings , the ''no feel '' settings. I was in this study for a year. It went very well . I ended up keeping the settings in my implant because they worked so well. Then, in 2017 , I started getting really bad headaches sharp pain down my arm . I was getting steroid shots in my neck for the pain for the headaches , they were due to a bone spur growing in my C 1 disk , so they say ,and unable to operate  according to 2 surgeons because it was to risky. They said , add another SCS to the head / neck. Add the new settings and try that. I did the trial as in the first , and it worked. I had that done in December of 2017 in Greenville, SC  at St. Francis , never again , the worst place I have ever been to . The hospital was a dump, period . It is the only place at the time that did this , so I had no choice . The nurse put an IV in my arm and it dripped all over the floor just for starters ....It went all downhill after this .

My surgeon is rated the best in the state , everyone raves about this surgeon . I didn't have any issues with this surgeon . My issue is now with this implant . It is 5 years old , had 1 battery replacement now because I have 2 working off of it ....and now I have 8 of 16 leads out in my lower back one , Lumbar, and it doesn't work anymore and I have to get it replaced. My rep has no idea why these leads are gone , and the xrays show a broken wire . I saw him last , 2 weeks ago. I asked him whats going before I showed him the xray report . He said all is good....I showed him the xray report and well...the look was priceless. He lied and got caught. From being in the study , and doing my own  research , I knew what was going on . I had been having stomach ,intestine and colon issues for 6-7 months now. Always feeling like I got to go . Everytime I went in to the rep to get it adjusted , he would have turn it up to reach the areas , which in turn , would increase my pain in my belly , and colon etc...my primary doc and I have been trying everything to figure it out , everything. Every test came back negative . Then one day after my last xray , I shut the whole thing down I was in so much stomach pain . That day I had just seen my Boston rep and asked him if there was any connection between my symptoms recently and these new settings ...nope no way he says ...

After the 12 hours , My back was killin me , and I turned it back on . Within an hour , I was sick all over again . I called my primary doc back, he said shut it down ,it is the problem. It is stimulating your stomach, intestines, colon etc and who knows what else and call the surgeon back. Easier said than done . You have to get a referral. This surgeon quit the hospital about a week after my surgery, I went for my follow up...gone . My problem now ...they want to put in a new one. But can't tell me why this happened , or why the leads , 8 of 16 burnt out. I have some serious trust issues now with a company who treated me well up until I asked some hard questions ....and they lied to me .When I asked my rep why the sickness connection ...he never heard of it before . I say BS. I have seen on some forms here and others of stomach issues . These guys are protecting the company they work for ...period. I have 0 trust in them after this. I have quite a bit of experience in this after being in the study. I asked a lot of questions , paid attention . I guess they do not like it when you educate yourself and come prepared with some information . Has anyone here had any stomach, intestine issues, crapping all the time, stomach aches really , really bad at times , especially after a tune up with your rep on sub perception , no feel settings ? If so , shut down your SCS for a day , if your symptoms clear up a bit , there's your problem . It is broken somewhere , a wire /wires and you have some leads out sending that current to your vital organs . You can check yourself on the remote . just play around with it as I did , I found out before he did , or at least until he told me when I confronted him .

Well after about 6 hours of this SCS being shut down , it's on 24/7 , I started to feel better in the belly dept.

After 12 hours ...pain free after almost 7 months of being on the toilet allday , craps in my gut .I couldn't eat without that ''I gotta go now '' feeling . My stomach was always hard . My colon felt swelled I guess is the best way to describe it . They tell me they have to remove it to find out whats wrong with it. I think they know and just don't want to tell me and want to ''destroy the evidence'', I just have no trust in any of these docs and reps anymore. I feel these folks are all in it for the cash . The sold me 2 SCS's in 5 years , and now want to sell another...500k each...to my insurance ....I smell a rat. Anyone out here have any similar problems , I could sure use the help. Thank you .....and by the way...I have had this off now almost 2 weeks, no more stomach , colon etc . issues , just a ton of back , headache pain from the first issue because it is shut down . Not sure I want to turn this thing on in my head now, who knows what the hell it will do in my head .

Sorry I’ve had the SCS for god 10+ yrs and the past 3 yrs it has been non functioning. When I first had it my life changed pain was tolerable even went back to work until my dr talked me into putting in a new SCS of a different distributor and then all these problems started, wouldn’t keep a charge, then battery needed changing now leads are broke. But what you are describing about not being able to hold your arms up to blow dry your hair yes that is exactly what happened to me. It’s the worst feeling. The past week I’ve been feeling like I’ve gotten severely beaten on my left buttock cheek right under the SCS. Walking just moving makes me 😢. I am in pain anyway but this is just something else to cause me pain. I also have a morphine pump that I don’t think is doing much to block my pain. I’ve had so many surgeries I can’t remember how many. I have failed back syndrome also. My spinal cord is twisted, numerous bulging discs. I need another surgery and after that surgery my last one will be a complete spinal fusion of my spine so it will be immobile. It is collapsing and they need to stop it. Hope you have found relief. 

Ive had the back Stimulator for 2 1/2 years now and i cant seem to get going i have Severe fatiuge on the side of the oraginal injury but feel like its coming from the Batterie of the stimulator itself. Dont know what to do. Batterie doesnt hold a charge cor nothing i get nothing from it period. And now all of a sudden i have some kind of infection in my body they cant find . WELL I THINK ITS THE STIMULATOR MY BODY HAS BEEN FIGHTING IT EVER SINCE THE DAY IT WAS PUT IN! # DESPERATE!

lost my post just now, so i will say quickly for the lady with CRPS.  I also have that from a wrist fracture and it can spread throughout your body.  if it seems like CRPS pain, it probably is your body rejecting the implant.

i have a medtronics interstim for nerve damage to my bowel/bladder.  i have arachnoiditis from failed back syndrome.  the CRPS is a non issue for me most of the time, but it does rear it's ugly head from time to time with than ungodly stinging pain.

i take no pain pills, because they make me sick to my stomach.  I live with burning nerve pain, sciatica, back pain, loss of feeling (able to pass kidney stones and usually have no clue until i am peeing blood) etc.  all the terrors of neuro problems.

IT sounds like many ppl have scs's that have inadvertently turned on nerve pain as a side effect.  i notice this with my interstim.  Nerves in our body are a wacky network!  If ppl have new leg pain this could be he cause.

several years ago my pain mgmt doctor gave me leg braces for foot drop.  it immediatly stopped the excrutiating leg, ankle and foot pain.  I was literally in heaven at the new life they gave me.  no more clump clump clump walking doing a # on my feet and ankles with every step until i'd just about be in tears and couldn't take another step.

i may be possible for those with leg pain that you also have foot drop from your spinal injuries.  if you can't walk on your heels without your knees buckling in to hold yourself up = you have foot drop.  

it is worth a shot to look into it.  I know it saved me.  Nothing i have can be cured.  I am in my 60's now and have suffered since the 80's.  I do the best i can with what still works and find work arounds for what is jacked up.  i never give up.

hoping and praying for relief for you guys.  every one of us know that nerve pain is absolute hell.  a bath as hot as you can stand it will kill that pain immediately for enough relief to give your exhausted brain a MUCH needed rest.   as long as you are in the tub the pain is gone!

when i hurt too much to even stand, i get off my feet and on a heating pad.  idk which is worse, the pain or pills to kill the pain.  for me it's the pills, so i only take one about 2x a year.  i really hate them that bad!