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I need to know if anyone else experienced this

A short background for me is that I was injured in 2010 while lifting a patient at work. I herniated a disc and had right leg and lower back pain. I was treated with about 7 steroid injections/ epidural injections, all of which were in different spots and made things much worse. After waiting 3 years and trying PT and chiropractors I got a second opinion and had a laminectomy at L5-S1. My back never felt better but my leg did at about 6 months post op the leg pain was back and worse. It was found in 2015 (18 months after surgery) that I had scar tissue pressing and the disc was still herniated along with L4-L5, facet joint arthritis and disc degeneration. I had a Spinal Cord Stimulator trial March 21 of this year and had the permanent implant on the 28th. The trial worked really well- about 80% most of the time. My leads were tunneled for the trial as we felt my chances for success were high. I am now 4 days post op. I have a burning where the battery was implanted- sort of the same feeling you might get when rubbing alcohol is poured into a wound. My biggest concern though is that when I sit up in bed or move a certain way it almost feels as if the leads are tugging under my skin? I told my PM and he said not to worry that I was likely just feeling the tape from the bandage pull. Now I am noticing that if I am sitting up and I relax my back muscles or slouch in the least bit it feels like the leads are moving up, and like something is poking me in my middle (thoracic) spine, almost like the leads are poking into something. I have been pretty active since the surgery, but not lifting more than a few pounds and trying not to bend. I did raise my arms up forgetting that I wasn't supposed to a couple of times but had no pain with it. I had to bend once (I dropped something and there was no way around it as I was at the CVS alone. I'm concerned that maybe the leads have moved already? After two surgeries within 10 days I am worried about a revision this early. I can't use the tonic stimulation at all (my rep programmed 1 tonic setting and 3 burst) the tonic stimulation is either too strong where the poking feeling is or too low to get relief. The poking feeling is very uncomfortable. I would love it if I could continue to get the same tried without it. I also feel it when the scs is off when I move a certain way or slouch but it's worse when it's on. I'm new to this and could use any guideance or help that I can get! I have a St Jude Proclaim Elite. Thanks!
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Comments

  • jimandjrjimandjr Dallas TXPosts: 745
    Just days away from my SCS install, I had the same pain. For me, it was surgical pain. Took a few months for that to subside. I was able to use my SCS right away. The SCS helped with my surgical pain. Ortho gave me very strict movement instructions for the first couple of months. 
  • Thanks for the input. The burning pain has gotten much better. I went and had it reprogrammed and the poking feeling went away but now I'm getting a terrible
    zapping feeling even on Burst on my right side. I am thinking maybe I am over doing it. What restrictions did you have? My only restrictions are arms above the head, lifting more than 10 lbs and bending at the waist. I've read other places want people to lay flat for several weeks. I've been up and active since the day of the surgery.
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  • jimandjrjimandjr Dallas TXPosts: 745
    You have the same post op body movement instructions that I had. I got the Nuvectra Algovita SCS. I just love it. I talk to someone else that has your SCS. I charge mine a few times a week. Right now, it has 2 tonic and 2 high frequency programs. I can crank up the tonic programs and they will vibrate my whole body. Sometimes, I just need a good hard massage and then I go back to the HF settings. I have many moments where I barely feel any pain. Those are so nice. When did you have your SCS install?  
  • I have a St Jude Eon.  The sensation could simply be a programming issue.  Talk to your programmer and get them to play with the levels some more.  If it's there all the time regardless of the program or the strength you might have some kind of fault going on.  
  • armelindarmelind South TexasPosts: 130
    I was told no bending reaching or twisting... and I had to do every single one of those every time I shower or put on my clothes, especially socks & shoes. One of my leads (implanted metal conductor thingies) moved slightly but they said it wasnt bad. My wound with the SCS implant took a much longer time to heal than the rest of my surgeries. For over a month it kept scabbing up. It was also very tender for quite a long time. It did eventually heal though.

    How long can you go between charges? My SCS needs charging about every 9 days.

    However my pain relief isnt as complete as yours. My pain resides in my pelvis even though we had injuries to the same areas L4,L5 and S1... however my disks were ruptured. And my SCS seems to feel as minor as a tens unit. It has yet to block any pain. I mostly use it to distract me I guess but it isnt really helping.

    I was told by my doctor that the SCS was supposed to send an electrical current to the nerves causing my pain and keep that nerve busy so it will not send the pain signal. I have yet to get that result. I have had 3 adjustments to my SCS and they dont seem to do anything with my pain. So... it is what it is.
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  • Hang in there ... it takes a quite a while for the leads to scar in.  Once that happens the signals get better.  Programming can also take a bit of time while they work out which electrodes do what and then create a program that will help.  It's a process.  Of course it's always possible that by bending, reaching or twisting the leads may have moved. 

    Regardless of the issue - I suggest a discussion with your programmer might help you sort out the issues.
  • Thanks for your responses. I did go see my rep who reprogrammed the device which got rid of the poking feeling. I feel much better and surprisingly less tired. I wonder if my fatigue was pain related. I actually just turned my device off to do a test- I want to see how long the Burst stim works through residual effects. I also want to reassess my level of pain relief because in some strange way it feels almost like my pain is gone and I have to verify that it's still there (I hope this makes sense). This is mainly because I did not expect near 100% pain relief and that's what I'm getting most of the time, even in my lower back. The burning pain seemed to be a phase of recovery. It's passed but I am realizing I am not thrilled about where my battery is. Its probably just my shape. So far I have worked out several times (doctor gave the OK for oliptical bike and treadmill) I haven't been able to work out in years. I mowed my grass once and had almost no pain with it. I love it. I wouldn't give up my new program for anything. The scars are pretty nasty. I am really hoping they fade; other than that I am thrillled!
  • Oh I forgot to answer some of the questions here. My generator is not rechargeable. I have the prodigy from st Jude. The cool thing about it is that it has burst stimulation. I have both tonic (normal) stimulation that can be felt as well as Burst. I pretty much only turn tonic on to make sure I am having stimulation in the right areas. Then I turn it off. Burst cant be felt and works so much better than tonic. I left tonic on for about a day once and felt terrible compared to burst. I would recommend looking into this model. Battery life while using burst is a lot longer. The rep also told me they are planning on coming out with a rechargeable version of prodigy. My remote is the iPod. I like it because no one knows what I am doing if I am changing settings. It's Bluetooth. It also means I can get software upgrades without surgery. There are two sizes to the generator, one is slightly bigger (still non rechargeable) but lasts a little longer so that's a good option. I have the small one because there was literally no room to fit the slightly bigger battery (in very short waisted). 
  • jimandjrjimandjr Dallas TXPosts: 745
    Glad you're getting good results with the St Jude. My Nuvectra rep said some of those batteries are only lasting one year. I would say conserve as much as you can. 
  • Hello, like everyone else here I've had back issues for most of my life. In '02 I had a 3 level fusion from L3-S1 and I felt great for about 3.5 years, only for  my back and lower right leg pain to return. In '06 I opted for another surgery, an Anerior Lumber Interbody Fusion (ALIF). That did NOT improve my pain level, but it didn't make it worse either. Then like a lot of people, I had cortisone injections and a bunch of other procedure searching for relief. I knew about SCS, and my reasoning for waiting so long was because I knew that was my final hope and there's no worse feeling than knowing that if that fails, pain reduction may never happen. So after over 10 years of chrontic pain, I finally got the St. Jude SCS put in and it has been my miracle. It is the Proclaim unit with the ipod, bluetooth control and it doesn't take all my pain away, but it helps about 65-70%. I had my unit implanted April of 2016, and I got the smaller capacity battrry because my insurance wouldnt approve the larger one. Well, when I went to my PM in April of this year, he wasn't too thrilled (and neither am I), but my battery life indicates I have about 6 months left before it needs reolacement. That battery was suppossed to last about 5 YEARS. That is my only complaint. The average lbattery life expectany is 5 years, and I'm only getting 1.5 years, what's going on here?? Even though the SCS has changed my life, the 18 months makes me feel like I got robbed. 

    Has anyone else experienced "premature" battery death?  I know St. Jude Medical had some defective batteries, but my batery is NOT in the same lot so I do not qualify for a surgery credit (all the info is in their website, and FYI Abbott Medical purchased St. Jude so keep that in mind.

    Oopsy, if possible I would appreciate it if the moderators could post this as a new discussion....if not that's alright. :)
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