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Spinal Cord Stimulator Problems

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TreasureNurse
TreasureNurse

I have had my spinal cord stimulator since May and I am having a lot of nausea. I have to keep soda crackers with me all the time. The SCS was put in after I had ongoing pain after my spinal fusion. I had an injury from an auto accident. I have had issues with the settings put on the control box by the rep as well. I had to push for setting changes to alleviate sharp shock like symptoms as it was stimulating. There is poor follow up by the reps after the SCS are put in. It seems their goal is to sell the stimulators but the patient is forgotten when it comes to legitimate reportable symptoms and follow up care.

4 likes, 221 replies

221 Replies

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  • Brashbuzz
    Brashbuzz TreasureNurse

    Posted

    I lost a lot of weight when I had my first SCS implanted. I totally lost what little appetite I had remaining nausea was definitely part of it. I lost over 20kgs and am now considered severely underweight which means the battery always flips over sideways in my backside.

    I have just had a SCS Revision almost 6 months ago to Burst, can anyone tell me if they have ever suffered severe pressure in the lead sites when their SCS is on? It it an immense tightening in my back at the lead site. The higher it is the tighter it gets but I can't have it down any lower as it is on the lowest frequency. We have also changed it to pulse and I have the same issue. I have CRPS II and it's not covering my leg and foot at the low level due to the pain it's causing in my back? My rep is unsure what to do as he has turned to frequency down so low already. Also, the leads feel as though they are literally tearing me apart from the inside out every time I try to get up or down, like they are razor wire. Sometimes they feel like they are stuck and I can't move or I will tear myself to shreds.

    I've had the trial, full implant, battery Revision, and now a lead revision where another lead was also added and a new battery inserted throughout the last 4 and a half to 5 years. This surgery was by far the worst though. I've never complained and always moved on, I'm just at a loss. At 6 months it doesn't seem right? Any help would be so appreciated! smile

  • DJ1976
    DJ1976 TreasureNurse

    Posted

    I am now 7 wks post op with the BURST.  I am having no relief.  The trial was with the leads the implant is the paddle.  I feel like I have gone back to square one.  So many here in the states and those across the pond seem to be having paddle issues.  I have a PM today.  It should be a doozie.  I have more questions than answers will be forthcoming.  I shall keep you posted on what answers I have or other possible solutions.  Have a good day,

    Dee

    • Brashbuzz
      Brashbuzz DJ1976

      Posted

      I hope all went as well as possible at your appointment Dee. I'm from Australia so well over the Pond here ;-)

      I didn't have a trial with the Burst Stim as this system is a replacement system. I had a fractured lead so he took it out and put in 2 new ones and a new battery therefore replacing the whole system with the Burst one. I have a 3rd lead in my Sacral Spine from the old system but it's dormant and unused now anyway. Sorry for the ramble, just clarifying I didn't therefore notice a difference in leads or anchors etc between the trial and full system with the Burst as have only had the full system implanted straight off the bat.

      You do now have me wondering if different anchors may have been used for these leads though? I know my PM Dr who I trust implicitly did tell me due to my low weight there isn't much to attach the leads to so maybe that is part of the issue, although when I had the last one it wasn't like this.

      I am hoping you got some answers for yourself at your appointment anyway.

      Fingers crossed!!!! Thanks so much for your answer, it means so much.

      Take care!

      Shaz

    • dianneg
      dianneg DJ1976

      Posted

      Hi Dee, I thought that we always talked that we were just two weeks apart. Tomorrow will be my 3 week post surgery implant, would it be possible that you are actually at the five week post operation?

      Inquiring mind want to know,

      Dianne

    • DJ1976
      DJ1976 dianneg

      Posted

      Hi Dianne.  No I am 7wks post op.  3/2 surgery -4/2=4wks.  Add 3 7 wks.  

      Does this not jive with your numbers.  I do believe I am farther along.  Week here week there, still no relief.

      my rep texted me this am and said, "It will have to be sometime next week."  Now mind you never said when he would call and what day.  Just giving enough rope.  Next will be another call up the food chain so to speak.  My poor hubby is so annoyed at this point.  He wants to tell these reps, PM and surgeon "That I had pain before all the trials but could function.  But now since the implant She can't function at all."  I had to think about that and realized how right he is.  So will have to wait with intolerable pain till I see the rep and try again to get the paddle system to offer me some pain relief.

      Dee

    • DJ1976
      DJ1976 Brashbuzz

      Posted

      Hi  Shaz.  I don't know of anyone here in the States that did not have a trial first.  Guess we do things differently here.  Insurance Companies want to, I assume, that there is some reduction of pain, before they shell out the big bucks on a stimulator that they have no info on for the patient.

      So we do the trial the get approval for the implant.  No new answers yet.  I will give it some more time,  I will then look to alternative methods of pain on my own.

      Take care on your end.  Hoping you are doing well on your end.

      Dee

    • dianneg
      dianneg DJ1976

      Posted

      Dee, I had my surgery on April 5th which was 3 weeks ago today. If you had your surgery on March 2nd then from my count you are actually 8 weeks post op.

      My husband vacillates between frustration and a touch of anger. He reminds me that it might take up to 6 months before the right adjustment can be found. Like I want to wait that long feeling like this.

      I am still having pain from the two incision sites, perhaps I will be able to tell better after those two areas heal more. Dee, do you still have incision site pain?

      Dianne

    • DJ1976
      DJ1976 dianneg

      Posted

      Dianne tell your hubby to keep his "Debbie Downer" news to himself cause we don't want to wait 6mos to feel good.  LOL

      Darn you are right.  March had 5 wks.  LMAO.

      Funny you mention pain at incision site.....are you sending me bad vibes.  Since this morning I have new pain at the battery site.  This is new.  It starts at the battery and goes into left butt.  Noooooooo I have enough on the right side.  Sometimes the incision site pulls if I move the wrong way.  I have another issue.  On my left shoulder blade, my skin hurts to touch.  Ultra sensitive.  I have no idea how, where or why now all of a sudden.  Maybe not all of a sudden.  It hurts just to have clothes rub up against it.  It is annoying to say the least.  I have no pain in the thoracic area at all.  Thank God for small favors.  

      Dee

    • Brashbuzz
      Brashbuzz DJ1976

      Posted

      Hi Dee,

      I had a trial of the first system I had in for a few years. The lead broke so therefore needed a revision surgery to have the lead replaced. When he replaced it he replaced the whole system with the newer Burst system as the Battery was also out of the pocket for the 3rd time.

      I've had a trial before full implant years ago. This was a revision Surgery but ended up being a new system installed at time of revision if that makes sense? Sorry if I wasn't being clear. I'm just trying to see if anyone has the issues with the Burst & pulling in the leads & tightness etc. I've never been in forums etc before,

      Thanks so much again and hope you get the news you are looking for ASAP!

      Shaz

    • DJ1976
      DJ1976 Brashbuzz

      Posted

      Gotcha. How did they know your lead was pulled out?  When they re did your surgery, did they put the slimmer paddle in?

      Dee

    • dianneg
      dianneg DJ1976

      Posted

      Dee, he really is a good guy, I think that he is trying to reassure me that I have a very long way to go before we say that it is a dud.

      I would never send you any bad vibes, triplets only send good vibes and healings to each other. razz

      I have found a "tube" that runs between the two incisions, perhaps that is the "paddles". Often when I get up in the morning and try to get up I get a feeling like I am pulling on those areas. It. Feels like. it is being pinched. Does that sound like what you are feeling? I have no idea why your left shoulder blade would be hurting, perhaps it is Sympathetic pain. I have fibromyalgia and I have noticed that the old pain that I had with it has been coming back. With my chronic pain my pain sensors have been going to my sciatica and down my left leg my fibro is peeking its head out. Oh Joy, why?

      So you are 5 weeks ahead of me, I hope that you start to heal more. Are you still having a lot of pain from your incision sites? Both of my incisions are still hurting are yours? I can feel the battery, it is practically sticking out of my skin. It might be slightly tilting, perhaps that is how it is suppose to be.

      I am going to try to not take my pain meds today and I am going to try something else. If that helps me a lot then we might need to move to a different state that is more willing for people who are in chronic pain to use.

      Dianne

    • DJ1976
      DJ1976 dianneg

      Posted

      Good Morning triplet.  I was just kidding about your hubby.  He like mine see our pain differently.  Andy sees this pain after implant less functional for me than prior.  I can do so much less and way more frustrating.  I see summer coming and being able to travel where walking is a necessity.  Me I describe my pain to those who will listen as a crimp in my style.  Couch Potato is not what I want to continue.  But until I can get regular meetings with the rep like at least every two weeks, until we are in a tweaking mode.  I see a very angry G-Ma for the summer.  

      Right now I have so many projects planned, and if things don't change, I do not see them getting done.  YUK

       My incision site for the battery is healed but it feels weird to touch it.  I keep trying to trace its outline.  Nuts right.  You described it as a pinch when you move.  Me too.  I was that was the scar tissue building to encapsulate it and for lack of a medical description, I'll go with to protect it.  

      God I sure hope no one uses me as their bell weather barometer.  This ha taken the wind out of my sails for sure.  I broke down last night and took a tizandine for spasms.  It does help a little.  But have nothing for the real pain, as allergic to all.  Oh happy day.  The dreary weather doesn't do much for the pain, or my usually cheery disposition.  LOL

      Well if you find a magic bullet be sure to let me know.  My youngest daughter, a teacher, who makes me proud knows someone who has gone to a type of pharmacy where they can compound herbs and stuff specifically for you.  Well I figure with what it is costing for all the meds for the back and my restless, what do I have to lose.  This night be my next move.  I will wait till schools out and we'll go together.  

      Hope you have have a better day.

      Dee

       

    • dianneg
      dianneg DJ1976

      Posted

      I knew you were teasing, not many husbands would have been a wonderful as ours have been. I know for sure that my ex never would have. He wouldn't even come see me in the hospital when our children were born by C. Section.

      We are hoping to drive to Colorado in September but I don't know how I can do that with this much pain. If the stimulator doesn't work then we may very well move there because I have no other choice while living in Texas. Today I am trying something that might help, I don't know yet.

      Take care and bless you

      Dianne

    • Brashbuzz
      Brashbuzz DJ1976

      Posted

      Hi again smile

      My lead was fractured. I was getting shocked by it, from the inside out. Awful experience! I just moved slightly one day to pick up my mobile phone that was ringing and it thwacked me like an electric fence from the inside out. I got my daughter to get me the wand to switch it off once I caught my breath and thoughts lol, from thereon in anytime I tried to turn it on it would do the same thing.

      When he took it out it was fractured.

      I am honestly unsure what leads or anchors etc where used. I didn't even have a consultation before the surgery. Once he knew the lead wasn't working from my Stim Rep (who didn't tell him for over a month) I was booked in for revision surgery within 7 days. I will need to ask him the details now. It all happened very quickly and I didn't know I may be getting an extra lead or new battery until I was in the pre op room, it depended on what he found when testing the lead as until they get in there it's hard to know what's wrong with the lead re the shocking etc so they test them when they open you up & do a conduction test before removing them.

    • dianneg
      dianneg Brashbuzz

      Posted

      That sounds like it must have been horrendous, I can't even imagine. I was wondering what brand of stimulator did you have in before, the one that was shocking you? When I use to wear a Tens unit the "leads" would sometime slide down and touch each other, that was bad enough and I'm sure what you had was so much worse.

      How long did you say you had the system in before the lead fractured? I have never heard of the possibility of a lead breaking or fracturing. I thought that you only had to get past the 6 to 8 weeks post surgery and all would be fine. This gives us a whole new way to worry.

      Dianne

    • Brashbuzz
      Brashbuzz dianneg

      Posted

      Sorry for my delay in answering. It's been a rough few weeks. It wasn't much fun lol.

      I had the system put in March 2012. I had a battery Revision due to the battery constantly flipping on its side, turning sideways and moving around in February 2015. The lead Fractured in August last year but we didn't know what was wrong so saw the rep in September. It took him over a month to tell my Dr who booked me in within 2 weeks for the Revision which was done early November last year. It's just gone 6 months.

      1 fractured lead removed and replaced, extra lead added (which I wasn't expecting), sacral lead from old system (now not able to used due to new system but wasn't functional anyway) left in and battery replaced with new one for new system as used Pulse system.

      So it lasted 4 & a half years before fracture. The thing is I am very stagnate due to my condition so I'm not doing constant repetitive movement etc of heavy lifting etc. They are the risk factors for lead fracture. Makes you scared to breath! Lol!

      Hope everyone is as well as am be and has improved since I was on here last. Thinking of you all xoxo

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