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Pain at Paddle Site + Odd symptoms

I had my SCS implant done in May 2019 for a lower back pain.  I had extreme success with the trial but now post surgery I'm not having the same success.  I've had the medtronic rep do adjustments 3 times now but the relief is no where near what the trial was and now I'm getting even more pain where in my middle and upper back which wasn't there before.  The pain is at the site where the paddle was placed in the middle of my back.  Tt almost feels like it is pressing on my spine all the time and the muscles around it hurt as well as.  I know it takes a while for muscles to heal after surgery but it doesn't seem to improve and I'm 5 months post op at this point.  Is anyone else experiencing this or has gone through this?  How long did it take for the muscles to actually heal after surgery to where it didn't hurt at the site of the paddle?  

I'm also having additional random issues with dizziness, headaches, stiff neck, and muscle fatigue.  I'm not sure if that too is caused by the SCS or if there is something else going on in my body.  These additional symptoms started about 3 months post surgery and they don't seem to be letting up.  I'm not sure if it is the high frequency stimulation causing it or if it is the paddle pressing on something or my body just not liking the SCS inside of me.  Has anyone else experienced odd side effects after getting an SCS? I'm not sure if I need to get this thing out of me or wait it out but with the upper back pain and everything else this device doesn't seem worth it at all.

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Comments

  • memerainboltmemerainbolt IndianaPosts: 3,774

    Derele82

    I am so sorry you are having all of these issues with the SCS. I had about the same problems.

    Of course, the trial went great, does for everyone. But within a few days I was in more pain than I started with. I had leads though, not paddles. The rep tried everything she could but I had so much permanent nerve damage that it was not going to benefit me at all. Within a couple of months I had it removed. The doctor wanted to leave the leads but I was adamant, take it all out. Which we did. I also had a lot muscle fatigue and headaches. They both got better in time.

    If I were you, I would talk to my doctor and ask about options. I hope you find relief soon. Feel free to ask any more questions.
    Take care and please keep us posted.
    Sandra
    Veritas Health Forum Moderator

  • I had my SCS installed in November 2018. And I can relate to how you are feeling. I am almost a year postop and I still have the muscle tightening and pain between my shoulders where they did the laminectomy and installed the paddle leads. It seems that the pain is caused by the laminectomy itself. My PM Doctor prescribed me Zanaflex 4mg twice a day. It seems to keep it at least tolerable. My SCS however does work on some of my low back pain. All of it except the axial, centralized pain in the center of my spine. Before you decide to have it removed, I would get with your rep a few more times and do some more adjustments to your programs. I have found that the reps try to adjust you as quick as possible. Like they are trying to get out of there fast so they can tend to other patients. Tell your rep that He / She is NOT getting out of the room until you are adjusted to 100% of your satisfaction. And hold them to it. I have found that as you heal in all the components, that it changes your stimulation. I had mine adjusted almost 20 times before the stimulation finally stayed where it was supposed to and stayed consistant. Don't give up. Get more adjustments until you are satisfied. You have come this far. You may as well exhaust all possibilities before having it removed. These are just my experiences and opinions. I am no doctor. I hope this helps, and that you find relief. Please keep us posted.

    Chris

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  • I’m currently suffering from similar symptoms.  I have Complex Regional Pain Syndrome in my left arm as well as a pinched nerve in my neck and in my left wrist.  I had my SCS implanted June 2019 and have had a hard time.  It feels like I traded one pain for another.  I have 2 16 electrode leads placed for cervical coverage.  I run my SCS all day, everyday and have to charge every 1.5-2 days.  When I charge the muscles spasm constantly so while I charge I’m stretching or moving.  Six weeks after the implant my surgeon ok’d PT.  I’ve been doing it 3 times a week since and have had very little relief.  The muscles in my neck, entire back and lower strap muscle where the battery is are constantly tight and tender to the touch.  At the 90 day postop appointment my surgeon ok’d chiropractic therapy and continued PT.  I’m having to take pain medication and muscle relaxers to get through the day. I’ve Chalked-uped the headaches and change in vision and slight dizziness to the meds but I’m beginning to think it’s not.  From the research I have done and spoken to my Chiropractor, I’m a little worried that there is Compression of the Spine and or late onset of Allergic Cutaneous Reactions to the SCS.  I have an appointment with my surgeon next week.

  • tiff13crps, 


    I'm still having the headaches, dizziness, and balance issues and the pain has not improved at all.  I was worried too about compression of the spine so I convinced my surgeon to get me a myelogram since I can't have an MRI.  The myelogram indicated where was no compression of the spine but after several doctors visits the issue is still going on and I've had no relief.

  • jbowerjbower wisconsin Posts: 120

    Derele82,

    I hope you see this because I have been living in hell since I got my stimulator 3 years ago.  I haha the medtronic scs with the paddle implanted as well.

    I had it done for sciatic nerve damage in my right leg.  The battery is just above the left hip. The surgeon that did it said the paddle is much better because the leads stay in place.  I should have had a second opinion because I have regretted that paddle ever since.

    After the implant I started having pain in my thoracic spine.  You can get yours adjusted but it wont help the thoracic pain because the stimulator won't go that high.

    I've been in pain management ever since.  I have had injections, microablation, radiofrequency, PT, chiropractic, dry needling, a second stimulator trial for the thoracic and finally a pain pump.  However the catheter on the pump is not high enough because they said they couldn't get it around the paddle and leads.  So now I have 2 implants that don't help. I take that back, the stimulator works on my leg pain.

    I can't do anything now as it has continued to get worse.  I have seen so many doctors and they all have said they can't do anything to help me.  I went back to the doc that put this in and he said it wouldn't be the paddle implant that is causing me pain.  That he hasn't heard that happen with any of his implants.  I told him I was fine before surgery and after I have had horrible pain in my thoracic spine right where the paddle is.  He he said he won't take out the paddle because it more than likely cause more pain than I have now.  Or it will stay the same and I would have the sciatic leg pain.  He also said he wouldn't remove the stimulator until I hit the mark where it was time to replace it.

    I'm trying to find someone that can help me.  I am going to have to start looking out of state for someone else.  I wish I could go back in time and tell myself not to have that paddle installed.

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  • Joel1QJJoel1Q Posts: 241
    edited 11/08/2019 - 9:40 PM

    Every time I read these stories it is fuel for my defense to my PM doctor who says an SCS is the only thing that will help my chronic pain.  

    CRPS was tossed around as a possibility for me for the first 6 months post op...I am lucky I just have chronic neuropathic like neuropathy (what’s the diff with neuropathy, not a lot I have come to understand). 

    I’m so sorry for you Tiff, and keep hoping you get relief Jason, derele, and Chan. Blessings and Less pain to all of you!

  • I had a non-paresthesia SCS (high frequency) implant with leads placed in my high cervical area at C1/C2.  I do NOT have paddles.  The surgeon that installed the SCS uses the term "buried leads".  Only one lead is active.  The second was placed their as a backup.

    The permanent leads were placed Oct 01.  I do NOT feel the unit when it is turned on.  I am still in the powering up mode.  Every five to ten days, I'm instructed in increase the power level a notch.  To date, I'd say I have about 60 to 65 percent relief.  My surgeon that installed my SCS unit warned me that I should not consider the unit a success until it is in use for at  least three months had that I have still have at least 50 percent relief at that point.

  • jbowerjbower wisconsin Posts: 120

    Hey Joel,  

    I really do like the pain relief for my sciatic leg pain as the stimulator covers 100% of the pain which is amazing and I am lucky for that.  It is just that stupid paddle thing I regret

    Like stiffneck7 just posted, they implanted the scs without the paddle and is already over half way pain relief.  I believe if I didn't have the paddle then I wouldn't have spent the last 3 years looking for relief that's not there.

    When they tried a second stimulator just for the thoracic area the trial was with the nevro H10 I believe is what it was called.  That was way more upgraded than the medtronic one I have and it is MRI compatible unlike mine.

    So there are good things about the stimulators but if you are in a room where the doctor mentions the P word then you make sure to jump up, kick your chair over, yell Hell No and run like the wind.......

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