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Anyone have SCS Removed?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:33 AM in Pain Management
It has been exactly 1 year today since my perm SCS was implanted. I have never really gotten any relief from it, so I am now looking at having it removed. Just wondering if anyone has had theirs removed.
I am in so much pain today that I can barely walk, so to have this device in that doesnt help me at all is pretty devastating.
Please let me know if anyone has any info/experience in the scs removal.
Thank you


  • Sorry to hear that your SCS isn't doing the trick for you. Have you discussed this with your doc and rep? What do they say? Did you ever get any relief from your SCS? How was your SCS trial?

    I'm just curious as to what point you got to before you made the decision that it needs to come out.

  • Hi,
    Whenever I told the Dr and Rep that it was not working for me they said it was never to be 100%, which is true, but I am getting nothing from it. My trial didnt go well because 1 day into it I bent down too lift something (shouldnt have done) but something snapped and they had to remove it right away, but the Dr kept saying I was a really good canidate for it so I went ahead with it. After that I have had 2 revisions to it. I also found out it really does nothing for the back pain at all, is more for the leg pain.99% of my pain is the lower back that radiates into the leg, so it never really did anything for me. If anything I think I may have convinced myself it did. Which is scary to think of not having it, because there is a fear of what if its worse without it. I am also wondering now if Peripheial Nerve field stim would be of use, so I will see on Monday.
    Take care!
  • i met with my neuro surgeon last week about scs for lumbar.....t10 is where he'd put it. my first ? to him was how long to take out. he said 10 minutes. that was hard to believe but that's what he said.
    what system did you get...
    did they make a good effort to adjust it...
    what kind of pain and where do you have it....
  • my dr told me it dosn't work on back pain....just leg pain. he also said it doesn't work on pain in groin...
    jen what happened to you is understandable...we all want to think somethig is going to help because so little has helped in the past...
    somebody a day or two ago posted about their peripheral stimulator for the lower spine...
  • That removing them is a pretty simple procedure. The ipg can be taken out easily. Not sure what they need to do to get the lead out as it has anchors.

    I doubt they can do it all in 10 minutes, but they do work quickly to keep the times down, so maybe.

    If you are unsure have you just turned it off completely without using it at all? That would be my first step. Charge it fully, turn it off and try and forget about it. See how you do, if you are using it at all then I would not have it removed until it stops working.

    I hope you have had many tweaking of the software during this year. Some of the things a good rep can do with the programming is amazing!

  • My understanding is that they rarely remove the leads from the spinal column, because the risk involved far outweighs any benefit in most situations. Unless there's significant proof that the leads are causing a problem, they'll just disconnect the battery and remove the IPG.

    And I'm just taking a guess, but I think the 10-minute comment was probably a reference to removing the trial, not the permanent implant.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Your a mirror image of my and my problems with ANS Implanted on 12-05-05. It was my last light at the end of the tunnel! And after 5 surgeries and being put under a total of 25 hrs. give or take. I'm really afraid to do anything. My pain is 90% low back and 10 feet and legs.(that's 25 hrs.all surgeries combined)
    I had such high hopes, What a bummer!!!
    Good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • hi...the 10 minute estimate was given by the neurosurgeon who inserts the permanent scs. this estimate was also given by the head pm dr in the group. i will have to double check on whether that includes taking out leads
  • Can you ask about the lead for sure? I sure would ask for it's removal if all else was going.

    My understanding of the no mri rule is that even having the lead left in rules out mri's? I'd hope that if one was going to not have the benefit of the scs they could at least return to being able to get mri's?

    Just curiosity on my part. I could of asked this before having the implant, but was afraid to even consider doubting my decision!
  • Jenni333, I can't believe the dr implanted you with the permanent scs after you told them you really didn't get any relief from it. They are only supposed to do the permanent implant if the trial is a success. I was told I should have at least 50% reduction in pain for it to be considered a success. Last Wednesday, I had the trial for the peripheral nerve field stimulator (for pain in sacrum area) and after trying different programs for 2 days, and not receiving any relief, my dr pulled the lead. Just remember, just because it didn't work for me doesn't mean it won't work for you or someone else. I'm so sorry you're going through all this and I can understand how upset you are to have the permanent implant which doesn't work.
  • I have a permanent SCS implant and was doing wwell until the rept fiddled with the setting for about an hour and a half.
    It irritated the nerves so bad I can't use it right now. It left me in agonizing pain for several days and my legs are so weak I had to use a wheel chair just to get around.
    Right now I would have the blasted thing pulled if I could!!
    Now my Pain Doc tells me I should never have had a stimulator implanted!! He is setting up an appointment to have a pain pump implanted!! I do not want more surgery.
    I know just how you feel.
    Patsy W
  • Hi Patsy, I had the same thing happen to me because of all the adjustments to the stimulator and I only had the trial for about 48 hours. My pain increased so much and it has taken from last Friday until today to be almost back to the level of pain I was in prior to the trial. Hope something works out for you.
  • Thank you all for your comments. I am scheduled for Surgery on 7/21. The plan is to take it all out, even the leads. The Surgeon did say he cant guarentee that they will be able to get them out, but says most of the time he can. I guess sometimes they are too scared into place. If they dont get them out then it will all be for nothing and that scares me! He also said this would be a more indepth surg, meaning more risk, pain and recovery. Lots to consider. But I am hoping all goes well. I will let you know how it goes. Thank you for your support!
    Take care!
  • Well I am 4 days post op of having the SCS removed. All went well per the DR, they were able to get all of the leads out, so that is good.I must say that getting it taken out is much worse than putting it in!!! Very painful. I can do very little right now, can sit for short times, hard to sleep due to the pain and location of the incisions. Today someone noticed my upper back, almost to the neck was all swollen, so in looking better, it is huge, it looks like a nerf football under my skin, also noticed that I am getting swollen around my neck, like I grew another neck or inner tube! So called the Dr, he thinks I am crazy but need to watch it, call my reg Dr and went in to see him, has no clue what or why it is there. Until he noticed the bruising on my arms, I have 9 holes for trying to get the IV in, he thinks now it may have something to do with platelets, but again, says to watch it, anychance anyone on out there has heard of this?

    Hope to hear from someone,

    THank you!!
  • I hope this finds you feeling much better. If the swelling continues to go upward toward your neck, make sure that you are seen by a doctor as quickly as possible. You want to make sure that it will not effect your breathing or swallowing.
    I know that every part of my back swelled right up after both of my surgeries, and it seemed to last quite awhile, even two weeks out, I was still swollen and tender, but truly, keep an eye on it.
    I'm glad that they were able to remove the leads and the battery unit. I hope that your recovery goes smoothly from here on out.
    Take care and be gentle with yourself.
  • 3 lead paddle stimulator inserted at t10. estimate of time was 10 minutes plus sewing me up time. he reiterated its a piece of cake. that includes removing the leads.
  • No offense, pete, but I wouldn't let that doctor touch me with 10 foot pole.
  • i agree that it sounds hard to believe a stimulator and the leads can be removed in ten minutes. the surgeon is one of the top neurosurgeons at a major boston hospital. he has inserted 40 stimulators and removed 4 of then. i liked the fellow and he had some good answers for my questions. my pm dr. said if he were to have spinal surgery he would want this neurosurgeon to preform the surgery.
    the ns surgeon surprised me when he said i'd be only partially sedated for the 2 hour insertion. a sedation similar to that which you receive for a colonoscopy.
    my trial was incomplete because dr couldnt find opening through which he could feed the lead.
    the surgical insertion will also include a test to make sure the coverage is sufficient. that is why they want me more alert for the procedure.
  • If you're comfortable with what the guy is doing, that's all that's really matters in your case.

    I suppose I have a different perspective, but I've already been through the whole implant process and experience tends to change the view. In my opinion, a quality surgeon will take more than 10 minutes just to gain access to the paddle. That doesn't even account for the time and attention required to release the anchors, safely remove any scar tissue in the area, and extract the paddle without damaging the dura and causing a CSF leak. And that's only a third of the parts involved...

    I also don't think 40 implants is an exceptional amount of experience, especially for a top neurosurgeon at a major hospital in Boston. Here in the buttcrack of the universe, my doctor averages 10 implants a month.

  • Pete I have to agree with BionicWoman on this. Of course the decision is yours and you need to be comfortable to your liking. It almost seems a bit too cavalier to me, the way this doc is presenting things. Or maybe it is a case of "lost in translation". Either way best of luck to you.

  • it gets so difficult to make a decision regarding scs...supposedly boston is a leader in medicine. i've gone to this top rated hospital since 1964. not once in that time did a dr even tell me the scs existed. you start to doubt everything. are surgeons protecting their territories? are they keeping up with whats going on? i have a glandular condition that necessitates my being near my endocrinologist at this hospital. he already saved my life 2 times during previous surgeries by noting that i needed more steroids. i tend to be a trusting sole anyway....too trusting. one of these days i'll probably end up beat up by the side of the road....hang in there pete...hang in there pete...
  • If you wind up beat up by the side of the road one day, I hope the other "individual" is lying in the ditch a few feet away in worse shape cuz you kicked his backside!

    One thing about the Internet and forums like these. Sometimes we can get way too much information and it can cloud our judgment. On the other hand sometimes we find just that right piece of information that saves our bacon. It's kind of a double edged sword.

  • yes it is a double edged sword....TMI...TOO MUCH INFO...i do like this surgeon...and taking the thing out is not my goal so like pondfisher just posted " I'M GOIN IN".

    ONE INTERESTING BIT OF INFO THE SURGEON GAVE ME WAS concerning a problem with bending my neck forward. i've told drs about sciatic pain when i lean the neck forward. this surgeon explained that what you are doing stretches the dura and puts a bit of pressure on nerves down below. so you feel it in the lumbar area. it has nothing to do with the neck fusion i have.
    this relates to the scs too because a previous poster mentioned feeling electronic sensations from lumbar scs all the way up in their neck. i guess the dura is a little bit like a telegraph wire! we spineys missed our calling....we should have become neurosurgeons. =D>
  • What I have found with the SCS, is that ANYTHING that changes the intrathecal pressure (like bending or straining), causes an increase in stimulation. For example, most people have a higher intrathecal pressure in the morning, as a result, most people with an SCS will feel a higher sense of stimulation in the morning. It isn't because we are "more sensitive" to the stimulation, it's just a natural occurrence due to our body doing it's normal thing.

    The decision for me to go forward with getting an SCS had absolutely nothing to do with how easy or difficult it would be to remove it. Since it was a last resort, worrying about the "what if's" just never played into the decision.

  • just wanted to let you know, when they removed my scs, including the leads, the surgery was approx 2 hrs, so not sure where the 10 mins comes from.
    But good luck either way.

    Take care all!
  • my neurosurgeon...i guess he's the bragging type....
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