SPINAL CORD STIMULATOR SIDE EFFECTS
Posted , 114 users are following.
have had s c s. almost 1yr. have had 2 major infections 11 days hospitalisation & had to go into theatre to have wound opened and flushed out with antibiotics. also had to have first implant battery replaced as it was in wrong angle and wouldn't charge!! have had spinal fusion and failed back syndrome. SCS was only thing hadn't tried. got relief on back pain from beginning but find it really hard to walk now.....my legs seize up and i have to stop every few steps....always in pain when i try to walk. Have also felt pain and limitation in my arms especially when i try to lift arms up ie drying my hair etc. Have trawled internet to find anyone with similar experience no success....my surgeon & reps say my NEW symptoms have nothing to do with the stimulator i don't agree.....can anyone relate to what i'm going through....or am i just the only one...please help my partner who is lovely feels im not giving scs a proper go....he doesn't know how much pain my legs are in. Pat
10 likes, 311 replies
lindagkelly patricia65203
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steve45447 patricia65203
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I have only had my Stimulator for 4months but things are not as I was told by my Neurosurgeon. Was told change in intensity when moving would normalize but that has not happen. Pain at site where wires and paddles were inserted in spine were rough first three months but now is getting so bad sitting, driving, standing is getting progressively more painful. This pain stRts in the spine and radiates through my arms and even into my head. I fear I will be in the emergency room soon as my Neurosurgeon released me after 3 weeks and does not respond, Pain Manager doctor has no clue and even received no help from GP today.Unlike most my problem is unusual and stems from a post op problem, now this.
Have heard of others that needed it removed, has anyone suggested this for you?
cynthia70714 steve45447
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Steve45447,
This is the same exact thing I have been going through since day one they put the Nevro in keep complaining nothing, I had to do something so I got a steroid injection 10/27 ever since that my face is numb having so much pain from neck site were the leads are and going doing to my foot finally made the decision to call the Drs office and talked to a aprn who said if it's that bad go to the er or call back in the am, are you serious?! I will not call as she had no right for that rely as I felt like I was being electrocuted from the SCS noone wants to believe me so I called the company and found out so many answers I've been lied to mislead and now o can go paralyzed from this?! Are u kidding me, already have nerve damage in left leg, it was so bad I almost ended it, but why give them that too, they have taken so much from me nomore, I want it out, my body my rules nomore can't do this pain no more, finally the rep is understanding where I am coming from and is gonna have a sit down with dr. The company wanted me to go to the er and have it removed are you kidding me?! An er dr, I will definitely be in a wheelchair
Stay positive and do what I'm doing stand your ground and request it to be taken out immediately
I wish you luck as I sit here in so much pain I'm in tears writing this...
Good luck I'll keep you posted and please you do the same, you are not alone
Cynthia (Cindy) USA CT
steve45447 cynthia70714
Posted
It saddens me to here the pain you are going through. My real story goes back to 2012 and through it all and the pain while trying to survice and provide you are right, I thought about giving up and giving in but have managed to survive. That said it has gotten harder to do so both mentally and physically.
The saddest part is the doctor s that were suppose to help us and made us worst simply could care less. It is amazing the way they are not there after the fact and do not want anything to do with you when problems occur. Fresh out the E. R I am currently waiting to see my uroligist on Tuesday.
Have to go now but please keep me updated, and Luke you said Stay Strong
Steve
cynthia70714 steve45447
Posted
Steve,
Finally after countless phones calls messages and finally a threat I was gonna get a lawyer did the rep really listen to me, he yelled at me and i said that's is it im done i tried to be reasonable but now my hands are tied I said I will get in a wheelchair n find the president of the hospital and sit and wait to tell him how unprofessional that office is. But now all of sudden the dr has a change of heart wants to talk to me but im bringing someone and recording conversation I think he's taking the SCS out but i think he's gonna say I have to go to a different dr which to me is very unprofessional if you can't listen to your patients than you have no compassion and need to do something else, I'm just finally happy that he's agreeing to take it out before more damage is done and I'm in that wheelchair, all I know is that I really really want to end the pain, but let them win?! Take my livelihood n my life, i won't let anyone get that satisfaction, I will try to stand on my two feet and ground and to the end n if it doesn't work out for me than im gonna get the paper news involved to let the world know how ppl in pain or treated, like lab rats guinea pigs you name it I was put on this earth to help ppl like you me and everyone else that wants to end it or thought about it, nomore this needs to go public and I think im the one to do!! I feel like it's my duty now to help everyone out there that needs me to show them we can overcome be bullied but yes the pain is real and we need to stand together amd fight this once and for all. So whoever is with me let me know, UK USA wherever your from give me your email addresses and i will stand up to whatever place you are in! We need to be heard before someone goes and does it. Nomore!!
Done being like this time to stand up for every person out there that can't deal with the way we are treated to wanting to end it all! So please don't get get up and fight with me!
Together we stand strong and as one!!
Cynthia (Cindy)
cynthia70714
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Sorry don't give up stand up and fight with me!!
Cynthia
cindyjq steve45447
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For the amount of money we pay I just feel lije getting an attorney and suejng both of these doctors they lead you to rhink uts gonba work and when it doesn't they play dum. I can't take it anymore this is a nightmare i have had my obe 6 mobths and I am in more pain than ever I even have new pains I didn't have before, I can't take it
cindyjq steve45447
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socksmom cynthia70714
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greg68362 cynthia70714
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leann04459 cynthia70714
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woodqueen40 cindyjq
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The companies push these doctors to sell these units
tonym01 patricia65203
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I had nevro implanted back in August and it's just another failure... first of all does anyone know whether a PM doctor is supposed to or qualified to do this surgery ? I have had debilitating pain in my hip close to where the unit was implanted. My doctor takes no responsibility for this very coincidencidal BIG problem. I've had multiple surgeries starting with a 360 S1-L4 12/2014, another in August 2015 for screw loosening surgeon ended up removing my posterior hardware said I was fused.... I went downhill and kept telling him something was wrong he didn't listen DO ANY DOCTORS LISTEN TO THE PATIENTS ANYMORE? Finally went back in December 2015 and said you weren't fused at S1-L5 and did a major revision been a nightmare my surgeon quit me sent me to PM who quickly started pushing Nevro it's done nothing but make things worse I now have a permanent limp and this PM Doc quit me. I'm so angry with MD's right now aren't they supposed to help the sick? I finally found a surgeon who is going to take it out and take some MRI'S he's at least made me a promise to TRY and help me isn't this what we all want!!!!! I feel for anyone that has struggled with chronic pain everyday it's serious it's very real not in our heads!! My body has hurt in more places since the implant. My most severe area is right at the S1-L5 it's unbearable most days every blue moon I have an ok day still on 25 Mic of Fentanyl along with Gabrpentin, Naproxen, Ribaxin, Very very frustrating!!!!!
Marciedoats36 tonym01
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I have also been experiencing pain in my left hip along the side and front. Sometimes it's just a pinching feeling while other times it's a stabbing pain. I'm so tired of injections and procedures that all seem to be a very temporary thing. I'm at a loss and just plain tired
ashlee225 tonym01
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I completely understand. I have had L5 removed C5/6 fussed. And the scs surgical placed. I have had years of steroid treatments epidurals Cortizone and Physical Therapy none whichever. They have now done the testing for fibromyalgia and lupus which both came up positive. I told him I didn't want to have those two because now anything that is wrong with me they will just blame it on those! I want a real Doctor Who will figure out what is really wrong with me! I also have arnold chiari malformation 1! No the doctor knows with this is nor do they brother to find out what it is! It would take them less than 15 minutes to find out and actually treat me with everything that I have
foxy32222 Marciedoats36
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Hello Marciedoats36,
I read your post and it sounds like what I endured before having the implant of a stimulator. It's almost been a month, after getting it programmed and chargers finally, it seems to work for me. I have read a lot of posts on here, some having serious issues. But I believe it's all about having a Dr. that is honest and truly cares. I'm in California. I feel your pain and just wanted to offer you some information as to what I did. I was taking pain pills 4 times a day as of now, I am down to 3, hoping it lasts long enough so I can go back to work. It's been very depressing for me, so I had a 7-day trial first, then I made up my mind to have the implant. Now I did have some issues but had it programmed, and so far it's okay. I hope you find help asap, don't give up!