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SPINAL CORD STIMULATOR SIDE EFFECTS

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patricia65203
patricia65203

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

311 Replies

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  • beth_09710
    beth_09710 patricia65203

    Posted

    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.
  • gloria80115
    gloria80115 patricia65203

    Posted

    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

    • socksmom
      socksmom gloria80115

      Posted

      Are you do I g better? Has the atm been removed? I certainly hope so...
    • ashlee225
      ashlee225 gloria80115

      Posted

      I had a rep come to my house to reprogram my box because you could not have any surgical procedures until you were reprogrammed. I had to tell him that when he reset it it left the program off!  He was reading from a piece of paper on his directions flipping the pages going back to make sure he did everything correctly. Scary that I know more about it than he did! I also waited an extra year to be able to have an implant that was compatible with MRIs! My dr.  Asked for an MRI and was showing me how to turn it off for an MRI and my unit clearly said do not do an MRI with this device! I have a spinx  on my spine which needs to be watched every six months via Mri! Guess we can't do that now

  • Marciedoats36
    Marciedoats36 patricia65203

    Posted

    I currently have the Boston scientific scs which in November replaced the original Medtronic scs. I'm in USA and the Dr. is out of Okemos, Michigan. Before I made the decision to get the implants I tried injections, nerve burning, physical therapy etc. I didn't sleep at night ever. Since the first implant the first 3 months was awesome. After that I had pain around the battery during and after chargingthe unit. The original implant was in May of2014. The battery itself shifted up to my waistband and became painful. I was spending more time with it off then on. Last November I had that unit replaced with the Boston Scientific scs. Right from the beginning things were a lot different. Partially due to the antibiotics they used fire the surgery and after. I assumed the bowel issues were all from the antibiotics. I'm now realizing that some may be from the unit. I'm noticing that my digestive system seems to be in limbo if I have the scs turned up enough to ease the pain. The things I liked about this unit was more control over the stimulation areas and that I could control the radius of the stimulation as well as the rate and amplitude. It seems though that when I am able to make my lower back and left leg less painful that I slow down my digestion. I have not been able to eliminate the pain killers because of course it doesn't help my neck. In all reality my neck has become much worse then it was in 2014. I no longer understand if this unit is actually helping me or harming me.

    • socksmom
      socksmom Marciedoats36

      Posted

      I just had trial over yr ago. My symptoms

      were immediate while in implant surgery room with doc and rep. They were not noted in records and from that day on they were denying any problems with scs implant. I had it taken out 2 days later. I Had whelping and blood red from tape with pinching pain in shoulder blade and nausea. Things got worse. Muscle spasms all the way around to stomach and rib cage, breathing problems, stomach upset, bowell problems, leg weakness to point can't stand or walk. They just kept ignoring what I was saying and told me to go to PC doc. They said have gastro test , heart test , before I came back,this was a coincidence not related to trial scs! Well I've done all that and still have same problem as Uve lost 30lbs due to diareah. Still leg weakness and breathing problem due to muscles in right chest and lungs, I think. Chiro for 6months and physical therapy for 2 months. They say I have dislocated ribs and right side pulled forward. Nerve or tissue damage. But they are not paid any attention to either. Must need to be medical doctor I guess? I have been thru the wringer and my money depleted doing all the test for no reason! Yes I am ready to STLL STAND UP AND FIGHT EVEN TO JUST KEEP OTHERS FROM GOING THROUGH THIS I ALSO WAS GIVEN SNOW JOB ABOUT THE POSSIBLE PROBLEMS INVOLVED IN THIS TRIAL IMPLANT PROCEDURE.

    • foxy32222
      foxy32222 Marciedoats36

      Posted

      Hello again,

      I see you have tried the scs by Boston,  I hope things are better now for you and you have a Dr. that really cares, and have made some adjustments to help you better.  Let me know okay? And best of luck!

    • woodqueen40
      woodqueen40 Marciedoats36

      Posted

      These stimulators are causing more problems and more side effects after they are implanted. I should know my husband has all of them after 2 failures and removals and we are fighting Boston Scientific about it. Metallic taste in his mouth like eating nickels, pain where the battery was, burning in the spine, nerve damage in his legs, constant infections, and pain in the pockets where the batteries were. Increased pain beyond belief
  • kayleena
    kayleena patricia65203

    Posted

    Hi Patricia,

    Are you still having the same problems?

    I had my 2nd implant put in 3 weeks ago, and it is working great for my leg pain, but like you, I have limited energy to walk to sit up for any longer than half an hour and its already been 3 weeks. The worst part is the pain in my upper back to the right side of my wound. I can hardly put my arms in the air, but having a shower and washing my hair is just so painful and then the rest of the day I am really bad. I just don't know what to do and the docs and scs people are saying it will settle. I am just concerned that I have now got another pain issue that will impact my life as well. I have also had a few times when the scs turns itself off (apparently cannot happen - so it must be in my head).. the pain in my legs when it is off is so bad, it is like I forgot how much pain I was in, and the pain is unbelievable. I would be interested to see how you are doing.

    Thanks so much.

    Kayleen

  • ashlee225
    ashlee225 patricia65203

    Posted

    I had mine put in about 2 months ago. Helped the leg and lower back about 50/60%. Nothing for my neck or upper back or right arm. I promise my mind is being effectby this. No one believes me. I am sending text to wrong people, missing appointments and still need to take the stupid pain medication.

    The trial went well. However now the doctor and ST. Jude's complete disagree about what number it should be set at. Had to text st. Jude's nurse the other day because my entire leg went numb after cleaning kitchen and doing laundry.

    I was supposed too "get my life back" I seem to have more limitations now!

    Can not get rid of the uti I got right after surgery. They are on round 3 of different antibiotics. Wonder if it has something to do with the placement of the actual device, right on top of my kidney?

  • albert08798
    albert08798 patricia65203

    Posted

    yes i can relate i have a medronic stimulator implant for 9 years now. only people who have this device can relate ( no one else) not the doctor or the programers, remeber these people take a class to learn how to install and the propgramer programs, the dont live the daiy strugles that we go thru with this device. only we can relate to differnt symotoms we experience with this device.Dont mean to sound negative or scared people from this device but that is exactly what it is , doctor and programer dont have the answer for you because they dont know what it is to have one implanted in them let them walk a mile in our shoes then maybe they will understand all the differnt feeling you get with this device. as for your question im not an expert but i can only imagine it is coming from your device, remember you have leads going down your spine that shift on your everyday movements even when you sleep so maybe one of your leads are pressing up on that never that controls that part of your leg. Not something the docotor want to admit to or correct , my suggestion to you is try not to overework your self until at least 2 years , try to lie on the opposite side of the pain see how that works and if it does ,you know your leads are the problem, as far as wallking with the device on i dont even do it its very uncofortable and mind distracting. also be very careful on mri machine that are not compatable like mine , i have to get a new device upgrade but i refuse to go thru the surgery again , they ruptured my spinal sack upon instalation so nothing i would want to chance again, and for anyone with this device know that you will feel eletrical sensation and vibration with the unit off something else no one has answers too ..

    hopefully that was helpful

    • Marciedoats36
      Marciedoats36 albert08798

      Posted

      If you do choose to replace it I would go with the Boston scientific the leads are the size of dental floss. I no longer feel like I have cords in my back when I last on my back. It was a little brutal in the beginning but it's been almost 7 months since I had mine replaced. This is so smooth and easier to use. The charging is a breeze compared to the Medtronics unit. It's much smaller and it's rounded. I love this because I have so much more control. I control the radius of the similarities as well as the rate and the amplitude of the stimulation. I was just going to get it taken out when they told me about this. It's derived from a cochlear implant so it's much smoother.

    • albert08798
      albert08798 Marciedoats36

      Posted

      thnx i will do some research on it , i just hate to have to puncture my spinal sack again ialmost died the last time 
    • cindyjq
      cindyjq albert08798

      Posted

      I indeed understand why 2 years I am in more oain than I was before I got this machine. It seems like all I want to do is sit down but I have to keep moving just so my pain dont get worse, I think who design this somebody' should tell him its a ripp off what a big wsste of money

    • socksmom
      socksmom albert08798

      Posted

      Oh awlful....may I ask how they determined the ruptured spine scs? Does Regular mri do that or contrast needed? I think my thecal sac is compressed or injured in my cervical infant procedure.

    • beth_09710
      beth_09710 socksmom

      Posted

      I'm trying to get mine out after numerous falls, hear ryrhym issues causing visits to er and cardiologist. I want scs removed as of no benefit to me.

    • socksmom
      socksmom beth_09710

      Posted

      Beth how long has it been in. They say scar tissue forms around them after so long. I don't blame you for wanting it out. These should not be pushed on any one except for people who can't walk or some one with no life at all, but not for chronic pain as it will most likely add more pain! Peoplle are not told of any complications or I wasn't only good.

      I used could get around pretty good with my legs, it was chronic pain in my right hand and arm I dealt with. Now, I have leg weakness so bad I can barely stand let alone walk. I have never had back problems or leg weakness until I got off the table that day after the trial. They deny any and every thing that it was not SCS. But I was fine walking in and not after. I must admit it did help the hand pain of RSD but was pinching immediately in shoulder blade on table, ignored, nausea, ignored, 2 days later fire red skin and shelled skin, ignored. From there severe back spasms going into chest and stomach. Then bowell problems. Breathing problems and leg weakness. Just kept saying was coincidence or I had flu! 2 weeks later we doc calls them and has them see me . But I think you can guess how that has went? Still over 1 year later no answers no better. FDA needs to get with these people to find out what the He'll?

    • beth_09710
      beth_09710 socksmom

      Posted

      Yes i agree the cons out way the pros I'm getting out of SCS device. When I complain about device told to contact representative from Boston scientific. I go over my issues pain where battery is located, already was infected after surgery as wound reopened. Pain in upper back where lead placed, pain where wires from lead to battery on right side of back when breathing. Falling out of nowhere occurs now that SCS device has been implanted. Represententative doesn't believe that the device is causing any pain. After falls also having pain in upper back where paddle sensors implanted and having chest pains. Several trips to E.R heart rythym off. Read form on internet states that SCS device can cause heart arythmyia or heart attack, can cause paralysis, can cause clumsiness. If I knew all that I would not have had implanted. Hoping they can remove it all without any complications. I still can't stand long periods of time, sit long periods have to lay down at times this is no different than before SCS device.

    • socksmom
      socksmom

      Posted

      Should've said implant not infant lol...

    • socksmom
      socksmom

      Posted

      Implant not infant..meant to say

    • socksmom
      socksmom beth_09710

      Posted

      Yes, Beth, I wasn't told anything negative about implants either...only knew to ask 'So what is the worst that can happen?' Nurse (rep?) replied 'It doesn't work'! I an so angry as I know everyone else that was lied to is. This has been around long enough that these people should know more than they do about our symptoms. Play dumb game is the protocol??

    • kayleena
      kayleena beth_09710

      Posted

      Hi Beth,

      Our symptoms seem to be very close. I had my implant done (Medtronic) at the end of March this year. It's been over 4 months now & the pain in my upper back (C8) where the paddle was done via Laminectomy is still causing such horrible pain. I can't sit on the laptop or do anything else for more than half an hour. I am not able to work & can't even stand without holding on to a table or something else. I have been having pains in my chest, but have talked myself out of anything being wrong. I also have pain all the way down my back from the paddle to the battery pack in my top right bum cheek. My leg pain is helped slightly by the implant, but not enough for all the other issues I now have.. I would love to talk to you further via direct message.. i think the hardest part for me right now is how bad I feel emotionally & the bad thoughts I have been having. 

      Looking forward to hearing from you. 

      Kayleen

    • christy05695
      christy05695 kayleena

      Posted

      Hi Kayleen! I hope things have improved since your post...I think I know what you mean by bad thoughts...I also notice problems learning, feel confused, brain feels tired, emotions do not connect with thoughts/reality, etc.
    • foxy32222
      foxy32222 Marciedoats36

      Posted

      Hey there!

      I just read one of your many other posts and sounds like you are doing better. Good news, you give me hope for the future! Good luck! :-)

       

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