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
Hi Pat,
Sorry to hear of problems with you scs. I'm only 3 months now with the permit one and have been lucky, no infections. It also was my last resort for pain management. It has helped reduce pain, but it didn't cover all the effected area. Captured I've learned has more broad of a spectrum. My problem is the battery was placed just mm from the trigger point! It has helped, but I didn't get my life back so to speak. My wife is supportive, but hopefully will never have to endure Chronic pain. Wish you the best.
Informally the root of your pain sounds like it's getting worse, and we can only turn up the power so far as we can Handel the impulses. I wish they could sever the nerve.
Ray
Hi patricia
You dont say what make your stimulator is or where it was fitted but i can only tell you this:- mine is a nevro scs unit fitted at in my buttock at st thomas hospital london ,i had no complications afterwards but did follow all the rules set about over stretching in the begining to avoid the wires moving,and returned to work on a phased amount time , finally achiveing full time employment after 6mths, i hav had mine 5yrs now with no problems other than when i over do things , i still do 30mins of streching 1st thing every day as advised to continue flexibilty in my body, as for leg pain i still have some but it seems to get worse in the cold , i was told the scs unit can give small amount of relive but is mainly for back pain i have back surgey and also a prolased disc which was previously operated on , i would say this to you remember all the streching and exercises you did as an inpatient , put this into pratice never going to far as to hurt and pace yourself as per set back plan you did these things to assist when things were bad, give the unit chance i hav not looked back
all best colin
Hi patricia
You dont say what make your stimulator is or where it was fitted but i can only tell you this:- mine is a nevro scs unit fitted at in my buttock at st thomas hospital london ,i had no complications afterwards but did follow all the rules set about over stretching in the begining to avoid the wires moving,and returned to work on a phased amount time , finally achiveing full time employment after 6mths, i hav had mine 5yrs now with no problems other than when i over do things , i still do 30mins of streching 1st thing every day as advised to continue flexibilty in my body, as for leg pain i still have some but it seems to get worse in the cold , i was told the scs unit can give small amount of relive but is mainly for back pain i havefailed back surgey and also a prolased disc which was previously operated on , i would say this to you remember all the streching and exercises you did as an inpatient , put this into pratice never going to far as to hurt and pace yourself as per set back plan you did these things to assist when things were bad, give the unit chance i hav not looked back
all best colin
Pat,
I feel ya, I feel like the SCS is not working for me, I'm having more pain and using more meds than ever, and I hear the same thing I'm not giving it a chance. Can't walk long at all without pain, the only thing I can say is thank god no infection that I know of, but ppl don't understand when you are in pain and its everyday they think that it's all in your head, I call bs.let them walk in our shoes and see how long they last.
Best wishes and hope u get some relief.
Cindy
Hi Patricia. I know what you going through, since my stimulation implant, I have not had infection but I havery had new pain. I am back at Walton and going to have my Meds re-evaluated and my stimulator re programmed. I am in agony 24-7 and no-one understands. I hope you OK and get sorted.
X Ady
Ady,
I feel the same way, I hurt even more than ever, my legs and back I feel like I'm taking more meds than usual.
I hope you the best in your journey.
Best wishes
Cindy
First, I'm so sorry you are going through so much pain. I think your settings are wrong. Probably way too high. Can you turn it down or does your rep have to readjust it.
Hello Colin
I am due to have my nevro scs implant on Thursday 1St Sept for chronic migraine.
At St Thomas hospital by Dr.al kaisy.
It's good to hear all is good for you.
I'm really worried about the pain from the battery site..as everyone seems to say it's real bad! Also worried I may move wrong and the leads will shift.
Did you have sedation?
Sorry so many questions.. Really nervous..
Many thanks
Hello Patricia
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?
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
Hey Cynthia
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
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)
Sorry don't give up stand up and fight with me!!
Cynthia
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!!!!!
I just had Scs implant 2 weeks ago going to follow up appointment today. The trial went okay but lead slipped had pain in ribs on some settings. When trial implant was removed I did miss one setting that seemed to help some. Now that permanent implant in I have side effects. Pain in mid back where lead implanted, pain in ribs, stomach. Right shoulder pain hard to lift anything with right arm even light stuff. Shooting electrical shooting pains down left arm. I am also getting spasms in stomach, legs and it occurs all over when sitting or lying down. I am not sure if this device is for me now that I have all these issues. Right now having left side rib pain. Back pain from right shoulder to low back. Did you find any relief? I have herniated disc l5 s1, fibromyalgia and chronic other pain.
I feel your pain 2 weeks in with permanent Boston scientific implant. Still pain on standing or sitting. Pain in upper back left shoulder, in ribs on left side down to low back. Spasms occurring stomach, legs and other places while sitting or laying down. No infection that I know of but going to surgeon today. My family members even think it's all in my head. Sick of being in pain and not being understood. Did you ever get relief?
Beth
Hi! I've had a scs implant se ve 2012 and two revisions and lots of pain infection and problems walking and standing my life has been miserable. I need another surgery and on ketamine. Now they want me to do infusions I think it's to much. My pain is severe. I feel you
I have had my Boston Scientific scs for a while now and get major relief from leg pain when using the high intensity modes. The lower intensity modes are much like a tens unit. Mine is programmed with several of each, but I find the higher one the better. The technician said the lower intensity programs modulate at 40 impulses a second much like a tens machine and the higher intensity modulates at about 800 impulses a second. I didn't have any infection and this scs was put in a little over 2 years from my last back surgery. Please make sure you have high intensity programs and if you do not ask a technician to install some. You really don't feel the higher intensity pulses in your body like you do the lower ones....it's almost like the machine isn't running but it is.
Going to surgeon to be released to Pain Managment doctor. I hAve gone to pain mgmt. They have said need to adjust settings with representative. I advised how much pain I'm having and they said that is why the implant was implanted. So I will get adjusted third time. I just want to be pain free or as close to it as I can you know the medication takes the edge off and I'm still in pain but now they won't even give you medication because you got the implant which isn't working. I wish I would not have gotten the surgery if I would have known that this was going to happen. I was hopeful that the surgery would work now if I turn it up as high as I can stand it with the vibration going my legs don't want to work correctly. The high intensity frequency worked a little as it feels like nothing is going on. I still have the pain when walking or standing for any amount of time doing regular housework I can't even get done what I need to do.
So I sit here and pain and now have to wonder how and when do they actually take it out is it a certain. Of time you have to wait. My boyfriend said that maybe it is your body rejecting the implant arm causing you other symptoms like constant pain painting other parts of your body. I'm really frustrated I see where other p.m. docs let people take their medication and have stimulator maybe that's
how they have better results. I wasn't sent to p.m. because I felt good.