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SCS removal

miammia Posts: 72
edited 06/11/2012 - 8:41 AM in Spinal Cord Stimulation
Hi, I have the SCS, been in me since May of 2009.I feel like I am giving birth since it's been 9 months now!LOL No, I want this thing out of me.The coverage is nothing as it should be.I told the doc in the trial that it felt good, while under anesthisia(sp) and it did I guess but it still wasn't where it needed to be.I needed it a little bit higher and told him the rep and anyone else who would listen.All I got was,well, you said it felt good then.So, being under anestisia is Gospel?!Anyway, I had to undergo 2 surgeries to get the leads correct.May was the first and then June was the second.It was the most painful thing I have ever done!Of course I was more prepared for the second one but still painful.
Anyway, the stimulation is mostly in my legs and butt.I need it in my hips and/or low back area.I am seeing a pain mangement doc and he will take it,I am wondering,do the wires stay or do they come out too?Anyone had this done,please tell me your experience.Thank you and pain free days your way.


  • I had my SCS removed a few months back. Nothing to it!! It was a piece of cake. Yes, everything comes out, wires and all. I kept my battery which had the whole hospital a flutter!! No one had ever ask for their battery before!! LOL First I was told there was no way I could keep it but I told them it was mine coz I paid for it! They gave it to me.
    I had a little pain for a couple of days but that was all.
    You will be asleep the whole time. I sleep on my back and was able to sleep on my back as soon as I got home.
    I feel so much better with it out of me!! I did not realize it was making me feel so bad until it was removed and I started perking up. I felt so tired all the time and itched like crazy.
    It is nothing like getting the implant. It comes out much quicker than it goes in. There is nothing to worry about having one removed.
    Best of luck to you.
    Cheers :H
    Patsy W
  • That's a shame that your Doctor and Rep failed to help you obtain stimulation in the proper area. Do you have leg pain or is your pain only in your back area?

    One thing that I have noted in my research is that if someone has a stimulator implanted while their back still has instability, the stimulator will eventually fail to provide any relief for them. Maybe you should exam having the fusion surgery that was recommended in 2007 to stabilize your spine.

    Hope everything turns out better for you.

  • As Patsy says you want to ensure they take it all out! Insist on it, especially if you may have instability in your spine. One of the reasons they don't, can't do MRIs with SCS in place is it can fuse the leads into the dura and worse, if there is a worse! So, I'd insist that if it has to come out, it all come out.

    Mine was installed in May too, I have a love hate relationship with mine, it helps my shoulder pain but adds to my back spasms, partly my own fault for refusing to do stop doing dumb things I should not, usually working overhead at my townhouse experiment.

    I use flexeril, Valium and wait out the spasms. I sometimes just get frustrated at the sensation my PM has left me with in the settings dept and turn it off, for days at a time. I question keeping it, but when things are bad it does work, so it is going to stay and I am going to try and insist I get a medtronic rep to actually attend my next appt, only have to wait till May :D

    I have decided no matter what I will place no permanent judgement on mine until two things pass.
    One is that it has been in place one year.
    Two is that I must go an entire month without turning it on.
    I'm in no hurry as my accident will soon be 4 years old. As time passes it gets easier to deal with things.
  • Thank you all for your responses to my post.I felt like the wires and all should come out too.I see my pm doc on the 23rd for another epidural.They seem to help me with low back and leg pain.So yes, I do have leg pain also,(someone asked).Still, I need the relief in my low back.A tens unit with pads you can place yourself works great for me but I am alergic to the pads,blisters,burning go on, unfortunately.I am going to ask my doc to remove the SCS on my upcomming visit.I have a feeling he will want to try his brand of the device since they are different but I will only do that if he promises to raise the area I need to be effected.I hate to put off what I think eventually be have to be done but I trust this new Doc and hopefully he can make it work for me.Thanks again for all of your responses,it helped me more than you know.
  • I best make it clear that EVERYTHING comes out. They gave me the battery in a baggie.LOL
    Nothing can be left in or as Wrambler said you could not have an MRI. I have had to have 2 MRI's since mine was removed.
    I was told by my 2 PM's that the SCS would never work for me. I do not know how a different brand would work but then I am not a Doctor. They know a lot more than I do.
    Best of luck to you.
    Cheers :H
    Patsy W
  • Thank you again to everyone responding.Yes,I am going to have the stimualtor removed.I have to wait until end of March when I go back to doc but it has been over a year so I can wait a little longer.I keep getting a pinching feeling in my back and shoulders more and more,that's a bit weird to me.Who knows, the wires migrated the first month,maybe they have again?Even with paddle leads though?Dunno..
    I had my second epidural,I think it's an esi?I only know it helps my leg pain greatly but this last one has left my low back throbbing with pain.I am sorry to rant and change topics kind of but it's been pretty bad.I take Kadian & roxycodone.I have Midrin and xanax for migraines from a different doc.
    I am going to go over all of my option with my pain doc like, removal (which is pretty much a done deal) and the revision of fusion surgery since these other options haven't worked out so well.I am 52 now though and am a bit worried about after surgery care.I might have 1 person can come help me out for awhile but not positive.My concern is overdoing if no one is available to help me.I suppose I have to just let go and if things build up so be it.You know, housework and stuff.Not that I am all that able to do as I wish now but I can only imagine not being able to do.If that's my option, then I will just not do....my back is more important, as you all know the pain we live with when it's still in the "finding out what works mode"Sorry so long, thanks again and thanks for letting me rable*Pain free days and nights to all*
  • Dave, I have left leg pain and low back pain, some pain in my shoulder area on my back as well at times.Usually after repetitive things such as washing dishing type motions.The epidural shot I got really helps my leg pain almost 85 %.My low back is throbbing pain after the shots though.I don't understand that one.I stated earlier I had the SCS since 2009 but it's been 2008.Thanks for your response and kind words.
    Painfree days and nights to all*
  • I am in shock!I have a scar about 4 to 5 inches BETWEEN my shoulder blades!I also have a battery in my hip on left side.Not in low buttocks and stomach area.Everything they showed is so much LESS than what my doc did to me?!I suppose that is why I am now numb in my shoulder blade areas on the outside of skin.This is so scarey...I will be glad to get this thing out and over with.I keep getting the pinches that are bothering me more and more lately.Maybe it's stress adding up,I am not sure but it is weird.
  • I did not have paddle leads and my battery was right beside where the leads were in my spine so removing yours may be a bit more involved than mine was.
    You may be a lot more sore than I was.
    I feel so much better with my SCS out and I am sure you will too.
    When the SCS works for someone it is good but no one understands what it is like to have one and it does not work for you.
    If you are going to have a fusion you will need someone with you to help out. That is a must.
    Very best to you dear. Please keep us posted.
    Cheers :H
    Patsy W
  • I am confused as to the placement of your leads. I wonder why your incision site is "between your shoulder blades" if your SCS is to treat leg and lower back pain. Are you a person of short stature with a short torso? Typical placement for leads to cover low back and leg pain, is to enter through the L1-L2 area and go down from there. A c-spine SCS enters through C7-T1 and travels upward.

    The videos give a "typical" placement scenario. Of course every surgery is unique to the needs of the individual, so if your incision is longer or shorter than the video, it does not mean it was "goofed up".

    Sorry that you find your SCS to be ineffective in helping to manage your pain. Is it turned off now, or do you still run it at any time during the day or night for any measure of relief? When was the last time you communicated to the doc or rep that it wasn't helping you and what did they say when you told them it was "pinching and bothering" you?

  • Well, Haglandc, I have been talking with my pain doc for a few months now.He has been giving me the esi's for my leg pain and low back I think.I know for my leg,I think the back just kind of get's "included" doesn't it?Of course each doctor has thier own way of doing things too, placements,which is better, which is more benificial to patient and such.I have told him about the pinching and sudden little shocks like that occur and I haven't run my stimulator for about 4 or 5 months now.I have had it since May of 2008 not 2009 like I previously stated.The years slip by so fast!Yes, I am of short stature,my brother says I bump my butt stepping off a curb I'm so short!LOL I need a step stool for everything and I have lost 2 inches in my 52 years.I am now 5 feet even.I used to be 5'2" eyes of blue,gitchie,gitchie,gitchie,goo***
    I am the shrinking woman,like the movie*...
    I still turn on the stim every so often,like once a month at least to see if it will "help" a little but it doesn't do anything anymore but aggravate.My Rep says it is where it should be and he doesn't know what else to do.I don't know how he knows it's whre it should be since he can not feel inside my body and know how the stim feels to me.I get frustrated with him.
    I was in the hospital ofr 5 days after my initial surgery for placement,then a month later,after regular x-rays,they see where the leads" migrated to the left", so he went back in and sewed "paddle leads" in place.He said it was a very long and difficult surgery.Again,5 days in the hospital and each time I had severe pain,with a morphine pain pump and trying to get the stimulator right.My rep was there immediately after surgery but I had bp cuff,air boots for my legs on and just to much stimulation going on as it was to adjust anything.The pain I was in was tramatic for me.I have had surgeries before but this was nothing compared to others.I hate saying it because I don't want to scare others thinking of getting one but it was the worse surgery I have ever had,so to consider removing it, is monumental for me.The pain of the surgery is that bad.My hip/battery area also got infected and the scar tissue is thick and large.Still, with all in the past I think it is best to remove it.I also understand everything is "reactive" to each indiviual person.Some float through like a breeze and others don't.Our bodies are unique to each of us.I am making a list of questions for my doc as I do have several.I wonder if when he takes out the SCS,could he do a fusion?Probably not as insurance wants things done on a seperate basis.The doc won't get paid for 2 surgeries but only one,even if doing 2,like I would want.I also do want the entire system removed,SCS,battery,wires,leads,all of it.The doc who did my original surgery has moved back home which is in another state,but I am not so sure I would want him to do the surgery anyway.The pm doc I have now,I trust completely and would accept his reccomendations.Of course I would still look at things thouroughly but I trust him.I do not want to try a different unit, or company brand to see if it is better than the one I have now either.I figure they do basically the same thing and that thing isn't working for me.I will say when I had the trial,I felt about 75 to 80 % better!It was such a relief,but it works for some and not others.I hope I am answering your questions.I really don't thnk my surgery was "goofed up" but my incision is longer than any I have come acrossed.Also,it is so high up,I mean right between my shoulder blades.I just searched for pictures,I need to keep looking.Anyway, thanks everyone have a painfree day and night*
  • I was merely curious about your lead position and your torso length, trying to make sense out of why you would have an incision between your shoulder blades.

    I hope that your new PM doc works out for you and helps get you into a routine that does well to manage your pain. I would recommend asking more questions so that you can fully understand what procedures are being performed and why, as well as potential complications or side effects.

    To be fair to your rep, it is difficult for anyone to know what spinal cord stimulation feels like unless they themselves have experienced it. Medical science can predict the most common outcomes and hence try to anticipate the proper lead location, but not everyone's body has read the manual to know how it it supposed to be wired.

    It's too bad that you had such great success with the trial, only to have these types of issues now. If you really want the system removed completely, you're going to have to go through the surgery. I think you're most likely correct that the insurance company may balk at two surgeries combined. Since you have paddle leads, I would double check with your PM doc, you may want to have him coordinate to get a neurosurgeon to remove the leads, since they have to be carefully removed. Unlike percutaneous leads that can be pulled out rather easily.

    Best of luck to you and let us know what you find out an how it all goes.

  • Hi mia!

    I'm only 3 weeks out of surgery but my doc managed to get both my legs covered and my lower back also. Right now we are working on getting the stimulation in the right plACE - (Ican feel it in my stomach lately), but my point is that with proper placement and proper programming, it can take care of both legs and lower back. I have nerve pain in my legs and achy muscle type pain in my lower back and I get coverage from my toes to my mid back., I have a Medtronic that was implanted by my neurosurgeon done with laminectomy.
  • Yes, I need and will have a nuerosurgeon removeing my stimulator.I got the notes from the last surgery in correcting my implant and I am floored by it.They did things I had no clue about.They were necessary but I was not told about it.I had a laminectomy at T7.The T7 lamina was identified.The previous T7 laminectomy was then performed dissecting the scar tissue as the previous laminectomy was filled with scar tissue.

    So, had t 7 laminectomy was then performed, dissecting the scar tissue off the spinal cord lead as well as the dura.The stimlator lead was then able to be removed.It was noted there appeared to be a septum,which was creating a bit of a mass effect pushing the spinal cord stimulator lead to the right.

    So, a continuation of the scar tissue of the dura, dissection was performed until this had been completly freed.This ws 35 minutes of meticulous work.The SCS was then laid back down.

    It was closed with drainage tubes and that was that.I know I have a lot ahead of me now.I am only waiting on Dr's office to call with a date now to do the surgery.

  • Any news yet when you will be having your SCS removed? Everything will come out. Nothing will be left in.
    I just had a 3 day trial to see if a pain pump would work for me and it was a huge success!! For 3 whole days I had NO pain!! For the first time in several years I had NO pain!
    I am waiting to hear when I will have my implant. It can't be soon enough for me.
    Best to you. Please post as soon as you know. I am keeping up as best I can.
    Cheers :H
    Patsy W
  • I am very happy for you!That sounds like a dream come true.I wish I had good news also but I don't.

    I went to the Neurosergeon today and he said my best option is taking out the battery and leaving the leads intact.They will just snip the leads from the battery and remove it only.Why?Because I have severe scarring tissues and he is worried that removing the leads a second time may,and probably will, cause a dura tear and leakage.Then I would have a major problem.

    So, I go back to p.m. doc cause he does the implants and removals himself but not at the extent mine is with scarring and previous surgeries for this.
    I will have to live with the sticking in my back, like a short jolt of electriciy, it happens by my movement and the leads being pulled.So, I have to remind myself not to reach to high or turn to sharply.

    I wish I had better news but thats the way it goes sometimes.Again,I so happy for you Pat,continued success to you and all!Gentle hugs~

    Will let you know what p.m. doc says about this all..
  • My SCS is for my hips mainly, though I also have arthritis in my sacroillium and knees that it covers, as well as my lower back. My surgeon told me that the paddles were being placed at T7-T8, and they are absolutely perfect.
  • So many things about your placement sound odd to me. I'm so sorry that your SCS didn't work out for you. I had hoped reading your earlier posts that the pain you were feeling in your upper back was some sort of electrical shock from the battery, but I guess this isn't the case if it is a lead tugging issue.

    I hope that they find some way to help you so that you can be rid of the pain!
  • I was hoping for better news. So they have to leave the leads in? That has to be a big let down. No MRI's for you ever now. I do wish things had worked out better for you. My leads were just pulled out but I did not have the paddles.
    My pain pump implant is this coming Wed!! It is about a 30 min surgery....minor but life changing for me. I have been on this chronic pain roller coaster for several years now and am more than ready to get off!! My pain has always been under treated and have suffered much to long now.
    I had to wait 6 long painful months to get in to see the Neurosurgeon who will be doing my implant but once I got in to see hem he has moved forward quickly.....thank goodness. He is in great demand and does a lot of pain pump implants so I feel very safe with hem. I will still have to take oral meds for BT pain but he is giving me a bolus(sp?) where I can give myself an extra dose of meds through the pump if and when I need it cutting down on oral meds. I have not posted anything in a long time but once I have the implant will post about it so that information will be here for others considering a pain pump. Thank you for the hug.
    Very best of luck to you Mia.
    Cheers :H
    Patsy W
  • Patsy, I hope everything goes well for you in your pump placement and the job it does for you.Just be aware sometimes it takes awhile to get the med doseage "dialed in" just right.Sounds like you have a great doc,already preparing for you if you need more meds with the bolus.Is the bolus like a small ball to squeeze meds in or is it a permenent tube in your tummy?

    I have everything on hold as my dh just spent 8 days in hospital with acute renal failure,gall bladder now has drainage tube in it and unexplained thigh/hip pain going on.I have turned into a nurses aide helping him flush the tube and changing pads etc...

    anyway, Patsy,good luck to you and I pray all goes well for you.
    Vella ...aka mia
  • Patwhite101

    How long did you have your device before you wanted/decided to have it removed? I had mine done in 6/10/11. I have left it off for the past month or more. The implant itself is causing more pain than it is helping. The paddle is just under my shoulder blades, wires down the right side of my spine and what seem like a huge battery in my butt. It does help some with RSD, but not enough to justify it. My original pain is in my left leg and foot. My doctor keeps telling me it will heal and the main reason I am having implant pain is because I am thin. This just doesn't seem like a good reason for MORE pain to still be dealing with after 6 months. My husband, at this point, thinks I should keep it. He isn't the one who has to live with it though. Honestly, I take more med after the implant than before. Any advise?
  • There is no shame in admiting the SCS is not helping you. Tell your Doctor that did the implant you want it removed.

    As you know you can not have an MRI with the SCS and you may need one sometime in the future.

    I do not now remember how long mine was in before I had it removed. It was not a long time but no matter how long you have had yours it can be removed.

    As it turned out I was allergic to the leads in the SCS. I now have a pain pump implant and I love it!! The only time I need an oral pain pill is when I am having a flare up! Isn't that GREAT?

    Best of luck to you. I do hope you find a way to relieve your pain like I have.

    Hugsssss :H
    Patsy W
  • Thank you so much for taking time to answer my questions. At my last appointment on the 19th, I had the Medtronics guy meet us there to try more programming. He worked on it for more than an hour, I lost track of how long it took. He found a setting where it slightly reached my calf and foot. But by doing so, it's so strong in my butt, thighs and knees that it is very uncomfortable. And that's without coughing, sneezing or doing anything else that otherwise increases the stimulation. So, it really didn't do much good since I still can't stand to use it. My doctor told me to keep trying till my next appt in Feb and if there is no improvement by then, we would consider removal. It is still so uncomfortable even with it off, it just drives me crazy. The battery and wires hurt all the time. Some times are worse than others, like when I try to turn over in bed or have to lean back against a chair. He said it shouldn't be giving me this much trouble and again said it's because I'm "skinny". BTW, I'm not that skinny at 5'7" and about 125, I'm not at an unhealthy weight. I guess most of his patients with this problem are much larger. I can literally feel the wires with my fingers, from the leads to the battery. There is also a wire at the paddle (leads) the flips out when I move and looks like I have a fin about an inch tall. He said that wasn't normal either. I really don't see any alternative other than having it removed. If it isn't helping by now, I just want it out. I will keep you posted on the outcome. Thanks again for your support!
  • It's a shame you must wait until Feb. to have it removed. I know you are going to feel so much better once it is out.

    Another person on here said the wires and battery pack hurt her. The SCS had worked for her for a while and then it stopped covering her pain. She had hers removed.

    Do please keep us updated.

    Patsy W
  • I called them today and am waiting for a reply about how soon we can get it done. Because of my work, even though I work at home, I'm on a timeline and I felt kind of silly telling them when it would be better for me to schedule. They had me believing the implant itself was so simple, I would be able to work as soon as I left the hospital after an overnight stay. What actually happened was, the surgeon nicked my spinal chord during surgery and I was terribly sick for the 3 days I was in the hospital and for about a week after getting home. My daughter (20yrs old then) had to help me get my work done after I got home, and it was VERY difficult!! This time, I'm making sure I have more time to recover some before I have to get really busy with work. I did, just now see where you said your battery was up high near your leads, so I hope mine will still come out ok. I do have the paddle leads and the battery in my upper right buttocks. It hurts to even sit on it STILL, even with pillows. My life is in NO way normal! I don't know what I would do without my husband, he has been doing the grocery shopping for a couple of years now. Unless I just need a few light items that I can manage pushing in a basket. It may be a pride thing, I don't know...I only just turned 40 and seem healthy to other people, so I refuse to use one of those cart things. I guess I hadn't come across the one you mentioned who had pain from the wires and battery pack, that's my same problem. I also know there was more minor nerve damage done during the implant procedure. Now besides just the discomfort/pressure pain, I also have sharp acid like burning at the battery and ever more numbness than after my fusion. It isn't constant, thank God, but when I does hit, I can't help but jump up and holler, because it is also so startling. I feel like I walk around with my right hand on my butt or wires constantly. I'm sure that looks great for those who have no clue. It really upsets me that this hasn't worked out. I felt so sure about it after all the research I did before hand, now I feel like an idiot for even going through with it. To give you an idea of how big this Medtronics battery thing is, when I measure it from the outside, it is 3"X3". We were under the impression that the rechargeable one was supposed to be smaller. I have also found out, I have to keep an eye on the power because it drains even when not in use. Thanks to reading all the comments and questions on here, at least I know to tell them they need to take EVERYTHING out! I'm so happy for you that your pain pump is still helping you. Honestly, I am afraid to even give that a try! For the longest time, the only pain med that helped in the least was hydrocodone. I have been on it off and on for 3 years and have tried just about everything else under the sun, without success. The hydorcodone recently decided to stop working all together and he put me on oxycodone again at a higher dosage. It seems to be taking the edge off some, but it makes me SO SLEEPY. I am also blessed with insomnia and can't just lay down and take a nap. If it weren't for Ambien, half a XANAX and 2 Advil PMs, I would never sleep at all! Ha, and people wonder why I'm so grumpy and irritable all the time, really!?!? I have lost most of my friends since all this started, because people simply don't understand what it's like to deal with such sever chronic pain ALL the time. Thank God I do still have a few, who I have finally made to understand that constantly asking me how I feel does NOT help. I found this wonderful article that many of you may find helpful to share with friends and family. It really did help with some of those who really just couldn't get it. Here is the link: http://www.wikihow.com/Understand-Someone-With-Chronic-Pain . Oh, another reason for doing it ASAP, my sister is getting married in April and I'm supposed to be her MOH. At this rate, there is no way. I can't handle a car ride for more than 1 1/2 to 2 hours...she is 5 hours away. Not to mention just being able to stand there and all. Anyway, when I get a call back about when we can get this ball rolling, I will give another update. Thank you for the support, and I wish everyone a pain free, happy, healthy life!!

    ~~God Bless~~
  • the lead placement on mine to is t7 and goes up from there. so i find this post very interesting to me. I am not short i am 5'11. my batery pack is on the right side of my back just above the belt line. before the scs i had a 2 level fusion in my lumbar. 30 days after the first surgery i was back in surgery again where the top pedical screw was on the right side the bone broke so it had to get repaired. About 3/4 of my right leg has no feeling. I have been using a walker to get around for about almost 2 years and at 40 not very fun. Every time i turn my scs on i get severe headaches and then turn it off. If i dont turn it on i dont get a headache. My scs has been off just about since it was put in.
  • My battery was actually below my belt line. Therefore it was always in the way while sitting. I had all of it removed 1/27/12 and am already feeling better. I still have surgery pain, of course, but I know that will go away. I have numbness like you mentioned in my left leg and foot. I was sent home with a walker after my first surgery in 09, but have refused to use it. Even though there is numbness, I think it is better to keep those muscles as strong as possible. But, I don't have a problem with falling either...I'm very obviously careful though. I just can't go there at 40, I feel old enough without a walker or cane. :)
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