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Surprised by location of permanent SCS

StacyAnnSStacyAnn Posts: 50
edited 06/11/2012 - 8:58 AM in Spinal Cord Stimulation
Well, I did it. I got the permanent implant Monday morning. My biggest problem is pain in my upper back. The permament paddle lead was placed through an incision near the spinal column, in the upper thoracic region! Anything I had read or seen talked about the lead being tunnelled up to that position from a lumbar incision.

Needlesstosay, that incision hurts like the dickens. It affects my ability to move my arms forward, never mind over my head (which you are not supposed to do anyway). The battery back is inserted along the top of my hips, which seems higher than what I read about, but it doesnt cause anywhere near as much pain as the upper incision.

Anyone have a similar expereince? I am taking valium 5mg every 8 hours and norco 20mg every 4 hours to stay comfortable but it still hurts like heck changign position. Hopefully this wont last too long.

The SCS was programmed in the hospital late Monday evening. I have got some preliminary programs that seems to cover the areas I will need based on past expereince. Of course, any of that pain is overwhelmed by the incisional pain.

I have to call in am for a follow up appointment with surgeon in 7-10 days. I look forward to hearing your responses.



  • Sorry you are having pain, I had 2 previous trials that failed in the past but now talking of doing another trial with the flat padle leads that you speak of,

    I might have just assumed when its implanted incision would not be a big issue,
    During the trial i know it was just done through a small hole of the skin for my lumbar in to the spinal canal,

    Hope it works out for you as it was ment to do, How big is the incision and where was your leads placed at if i may ask?

    I been puting off seting my trial for the 3 rd time in last 7 years because it failed 2 previous times but i cant put it off any longer, Stick a fork in me i am done suffering like a wounded animal,

    Wish you the best of luck and hope incision heals fast and things get much beter,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • When I had mine done it took about 5 weeks for it to the pain want away. But it was worth pain to be able to get some of my life back.

  • They are suppossed to be 3 inches long each. I havent taken a shower and changed dressings yet today so I am only going on what discharge PA said.

    I know they put in at least one paddle lead and that is why it wasn't a small percutaneous hole like the trial. But still, I didnt expect it way up there throug what feels like a muscle, or could just be swelling. Need round the clock valium and norco to manage the incisional pain. It is so overwhelming the lower leg and low back pain that I can barely notice them. But when I do, I turn on the stimulator and push back on that pain as well.

    I will keep posting as the first days go by. But it seems like this will turn out to be the right decision for me.

  • That is what I am so looking forward too!

  • Ps. Just keep an eye on things make sure no infecrion comes about, Good luck,
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • It doesn't matter if they implant percutaneous or paddle leads, they make aprox a 3 inch incision. The trial leads are inserted by needle and tacked to the skin. The permanent percutaneous leads are inserted and anchored to the deep muscle fascia. To connect everything they need room to manuever.

    My leads are cervical and go in through T1-C7 and are threaded up from there. It felt like I was clobbered between the shoulder blades with a baseball bat. The worst of that went away after 4 or 5 days and then it was a dull deep ache for a few weeks.

    Why do you turn your stimulator off? Generally it is left on. Some can be programmed to cycle on and off at specific time intervals, but that is all determined by your doc. Just curious. By leaving the stimulator on, your back and leg pain should be constantly managed with just a small amount of breakthrough. Breakthrough pain is easier to knock down with fewer meds generally than chasing after pain once it has gotten a strong hold.

  • and the back incisions are very itchy. Saw the PA at the NS office who toof off all the bandages, including the steristr She said the incisioh looked good and they would see me again after 9th oeriod;

    She says it will wake time for the muscles and everything it feel better. I hope so too.
  • You can tell I was on a lot of meds! 9th period is at my kids' school! LOL Guess thats why we tell them no drinking, drugs or smoking.

    In the past couple weeks, I am haappy to report that the majority of the shoulder blade pain is gone, but it took its sweet time. Now I dont wake up with the pain. It just develops over the course of the day.

    Do you know how hard it is not to raise your arms above your head? Of course, that is what aggravates the area and causes pain. But almost one month done, one to go.

    SCS is working well. I keep tinkering with the settings to find what works and what doesnt. I do find that it is easier to control the pain by adjusting the level rather than turning it on and off.

    Will be seeing the doc on the 21st. Hopefully all will be well. I feel sick at some point most days but wonder if its not related to coming down off some heavy meds or the common cold. Nothing has gotten serious enough to call the doc yet. So that is good.

    I will update you all sometime towards the end of the month.

  • I hope you are continuing to improve. SCS gave me my life back. I was bedridden for almost a year with 2 young kids. I started having trouble at 16 and had total of 10 lumbar surgeries before needing the SCS. After all the surgeries, I was stable and then a nerve root somehow tore open. By the time they found it, it was too late to attempt repair. Drs likened it to having live exposed wires inside my back. I would have let them snip my spinal cord if it meant stopping the pain. Although I eventually needed to add a morphine pump to the SCS, it still helps a lot. It needed replacing once after cracking a lead falling down the stairs, but am thankful each day for having it. I hope you feel the same way after healing.
  • I continue to be happy with the device. What is interstingly bothering me is morning-time. When I wake up the area around the stimulator is very sore, sometimes even painful until I have been up for a while. I notice at times it seems like the implant is going to poke through the skin. So somehow my sleeping position must torque it. Anyone else ever feel this? Is there anything to do to like keep it from not pushing on the skin. I thought of taping up the area, like a pressure bandage but that would be damaging to my skin after a few days. I put this on the list to ask the doctor.

  • the implant is as u know placed under the skin, so it feels weird for awhile. i just wanted mine placed where i wasn't going to feel a bump in bed ;)

    it's a good idea to meet up with your programmer as the swelling goes down, as scar tissue grows and as you become more comfortable with it. i met mine at most follow-ups just for convenience so i could tinker with it, i had a time where the thing just stopped working very well and as it turned out i need more tinkering.

    my paddle has 16 contacts or electrodes if u will and 2 leads going to the battery. it took a good while and many programmings until i seemed to have some real solid programs. i have the advanced bionics model from boston scientific as well and love it!!!!

    do u know what vertebral level the paddle is placed? just curious.

    glad to see you are settling in. i have to get off my sleep program and get up so hagd and keep us posted. i love mine !!!!
  • Hello this is my first post but my biggest problem is recovery after the implant I know i am only 2 months post op but i am having relief from the pain. Before implant i was maxed out on oxys 320mg/day. i legally use cannabis for break thru pain and to help with motivation.cut back so far all BT oxys with cannabis. over 200 pills a month but i was still bed ridden in excruciating pain.had bone scan and now have mild osteo-pina so no MORE ESI i did trial for Boston Scientific (too many recalls on medtronics device) and was pleased. so i had perm.one done the reason they are placed high on hip is so when you sit. upper incision is still bothering me itchy and cramping especially between shoulder blades now that i can move! my muscles are in such bad shape i cannot even cook without having to turn the stimulation up high i am hoping i can endure PT to rehab muscle atrophy n weakness. hope this helps i am aprox. 4 weeks ahead of you. feel better joe
  • I healed from my scs surgery got used to it, what it could do for me then tried the real world. i have to say it was exhausting, just as you described. it does get better. alot of naps and long sleeps ZZZZZZZZZ i still do if i do/try something new........it gets better in my experience slowly but-sureley. patience is needed but u will get there!

    good luck
  • I was wondering how long ago yours was implanted. Stacy is a month ahead of me.i also have a knot in my lower back and my side aches my hip is really sore and from the last thoracic level to my implant i am sore n cramping up i know everyone is diff. but can you describe your recovery please. Joe
  • A couple things that I found I like to do when going to a reprogramming session.

    1. Go with a fully charged battery. Reprogramming consumes a lot of battery power.

    2. Have the rep save your current programs so that you can switch back to them if the new stuff doesn't work well in a day or two

    3. Be careful about the amount of weight you lift while healing.

  • Well, I went to my 2 month appointment and also had my first program adjustment. The 2 month appointment went well. Xray shows electrodes still in the right place which is somewhere in the thoracic area but I don't know exactly where (question for next visit). They increased my weight limit to 10-15 pounds. So I tried lifting a 2.5 gallon container of Poland Spring water (which my husband lambasted me for because that is apparently almost 21 pounds- firefighter, guess he knows the weight of water) from the floor to the fridge. Wham, pain shot right from that pesky L5 nerve from my back down the foot! However, I upped the juice on the stimulator and reclined for an hour with a book, and the pain declined to an annoying ache but there was not the usual cascade of muscle spasms and pain that would have sent me to bed for hours with some Norco and Flexeril. So even though I OOPS'ed with the weight, the resultant pain intensity and duration was less now that I have the stimulator.

    As for the reprogramming session, I should have left things the way they were. The original programs were working fine but I wanted some tweeking done to see if 2 of the programs could be more effective. The tech adjusted something on all 4 programs and now the pain sitting is much worse AND I can't get relief for it like I could before. Plus I am having problems sleeping again due to the pain buildup by the end of the day and frequent urination . I have a call out to meet with the tech and reset everything. Guess I shouldn't have messed with a good thing.

    Scars are healing well. I am less bothered by the battery pack although every once and a while when I bend over, I could swear that thing was trying to eject right thru my back. OUCH. I am having occassional pains in my arms and between the shoulder blades. I find that even gentle leaning, like over a sink to wash dishes or the computer to type, brings on this phenomenon. Hopefully it is just my muscles getting used to being worked again.


  • Thanks "C"

    They did tell me to make sure I was fully charged before the appointment. So I was good on that.

    I am hoping the Rep saved the original programs. I think she did but I am not sure.

    The weight thing is definitely true! Boneheaded move on my part with the water. I am trying, especially since, as the saying goes, the only person I am hurting is myself.


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