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Removal of spinal cord stimulator

adventureraadventurer Posts: 22
edited 06/11/2012 - 8:52 AM in Spinal Cord Stimulation
Hi - I had my stimulator put in in Feb. of 2009. After getting programmed multiple times, I love it. It really helps with my tail bone pain and pain and fiery feelings down my legs.
My Doctor wants me to have it removed so he can do an MRI of my spine. I had a fusion in Aug. that collapsed after 5 weeks, was redone and I'm doing pretty well, but having a lot of numbness in my feet and legs - mostly left one. I had a myelogram to try to discover the problem. Ended up with a spinal fluid leak in late January and have been doctoring to try to seal it ever since. I have a tethered spinal cord and have had two surgeries inside the cord, plus five others outside the cord, so there's lots of scar tissue and hardware. We've tried blood patches, fibrin glue patch, a drain in the cord for five days in the hospital with nurses turning me, and another five days, to try to seal the drain site. That's where we think it is leaking now!
Now, before he does anymore poking, he wants to remove the stim so we can see better what it going on.

Has anyone out there had there's taken out? Did it cause a spinal fluid leak? Did you have it put back in?

Hoping and praying it will heal on it's own before May 3rd when I go back to Mayo.


  • I had my SCS removed because it just was not working for me.

    No, I did not get a spinal leak and you should not get one either. Having mine removed was a piece of cake. Much easier than the actual implant.

    Hope this helps.

    Cheers :H
    Patsy W
  • nycolennycole Posts: 4
    edited 09/13/2012 - 11:54 AM
    Did u stay over nite, what happen,did it hurt much
  • No,, it did not hurt me much at all....not as much as the implant. I went home that same day and within a week was fully recovered. I did not have the paddle leads and they may be more difficult to remove. Plus I did not have the SCS implanted very long. Perhaps that is why it was so easy on me. I felt so much better when it came out. Seems I was allergic to the metal leads and that was why I felt so bad all the time plus I itched all over all the time. The itching stopped too.
    Having one removed is really no worse than having one implanted.
    Hope this helps.
    Patsy W
  • Thanks patty it helps more than the scs does lol
  • terrie beatricetterrie beatrice Posts: 1
    edited 06/19/2014 - 4:56 PM
    Finally I've gotton my surgery date for removal of my St. Jude SCS. Ive had it implanted 5yrs with no success or any help for my pain at all. Because of inept hospital personnel its taken me months to get a surgeon appt & medicare approval. Because I had to be my own advocate & actually go up to the hosp to complain my surgery date is June 24, 2014. Ill never get another implant for any reason. The doctors benefit by getting paid, but some patients (myself) only end up with more pain.
  • sandisandi Posts: 6,343
    edited 06/20/2014 - 5:24 AM
    Unfortunately, for some patients, the scs implant was not a good idea, and it doesn't work to relieve the pain. Did you undergo a successful trial before implanting it permanently? Was your pain relief at least 50% during the trial?
    In cases where the pain relief was not at least 50% reduced, the permanent implant should never happen. At least according to the manufacturer's recommendations and standards.
    I'm sorry that you are facing removal of the implant but hopefully, this will lead to a better outcome for you and possibly getting a better diagnosis and treatment with it removed.

  • I have had my SCS for 3+ years. It quit working totally after 4 months. I am now 18 months out from an L4 L5 - L5 S1 fusion and have not felt this good in years. I now want the St. Jude stimulator removed. Any suggestions on the best way to find a surgeon to do the removal?
  • You can contact the surgeon who implanted the device or consult with another pm office about removing it. A board certified spine surgeon may also be an option. One thing though, they may not be able to remove the leads for the device. Once they are scarred in, removal is much more difficult and normally, they can remove the battery and have to leave the leads in place.

  • I had my non-functioning spinal cord stimulator removed today. I suffer from permanent nerve damage to my sciatic nerve. My neurosurgeon and pain management doctor thought this would be the golden ticket for pain relief for me. It was the "shiz" when it worked - that was three years ago. After losing over 80 pounds, the stimulator was not able to hold a charge as it overheated and quit charging. We tried reprogramming and placing towels under the charging unit-to no avail. I finally decided it was time to have this mutant device and its paddles at T11-12 removed. This is the most painful experience I have ever endured. Perhaps it is because this procedure was performed in an outpatient facility and I was sent home less than two hours after the explant? All I know, is that I'm laying, sitting, and standing in many different positions and cannot get comfortable. Does anyone have any advice on how I can get comfortable. I do have 2 mg of Dilaudid that I can take every four hours. So far, absolutely no pain relief whatsoever.
  • You can use ice , 15 minutes on and then off for at least half an hour. Laying on your side, with a pillow between your knees may help.
  • Thanks for the ice suggestion, Sandi. It really helped. Boy howdy what a rough few days, but I'm on the mend now. Actually feeling so much better and wanting to get on with "regular" life. I am not scheduled to see my surgeon for post op review until 9/24/14. I'm itching to get out for a walk. I don't think it could hinder my recovery. Could it?
  • take it slow and easy, and easy terrain.
  • Please I don't want someone's literature sites, I only want to hear from people who have had their SCS,PNS removed. When Ozzywoman says this was the most painful, was yours sewn into place or did an anesthesiologist implant it under fluoroscope. I am looking to get it taken out. I went to a world renowned doctor for the implant and he as a neurosurgeon sewed it in. The local dos that the SCS folks referred me to is self insured, so he won't do the surgery to remove it unless I first get a morphine pump installed. Doctors who understand my diagnosis say that it is not a good idea to insert a morphine pump. But if yours was shoved in as the anesthesiologist does than we'd be comparing apples and oranges, so if yours was sewn in, I'd appreciate to hear what happened and what made it so painful. I found the insertion to be one of the most painful procedures ever since they removed pain meds and made me roll onto the new incision so the pain would make my BP rise. Thanks for any help.
  • Shes participating in a class action lawsuit against St. Judes for this implant being recalled. IF YOU HAVE ONE DONT GET IT, but moreover---- can anyone give me an idea of how much removing this thing will cost? The lawyer said that the hospital can't verify her claim because the battery has to be taken out already for them to test if its defective. The hospital isn't liable for the removal costs though, even though THEYRE the ones who put the damn thing in her back! It seems like most of y'all had it paid through insurance but we don't have access to that kind of help, and we're trying to get her approved for federal assistance but that isn't panning out either. We're doing this out of pocket. how much did it cost?
  • the lawyers in the class action lawsuit say the hospital isn't liable for the cost of removing the spinal implant. its been recalled. how much did it cost to get it taken out? we're paying for this out of pocket, insurance wont touch it.
  • CsesmanCCsesman Posts: 1
    edited 08/07/2015 - 8:53 PM
    I have been dealing with back issues since 1998. I've had 5 major back surgeries with the last being a double fusion of L4-L5-S1. Prior to the fusion I had a paddle lead SCS implanted. This was in 2007. I have been in pain since the fusion because the nerves have been damaged over and over in the same area. I have gone from pills to patches and I'm at 100mcgh of fentanyl and right now that's not helping. 2 years ago this changed and now when I stand or sit in a chair the pain goes from a 2 to 8 within just a few minutes. I had a myelogram CT but it didn't show anything. I want to get an MRI but with the SCS I can't. I saw a surgeon recently who told me that taking the SCS out would be worse than anything I had before because of the paddle leads and the time it has been in. He said the myelogram CT was better than an MRI. He wants to leave in the SCS and implant a pain pump to deal with the high level of pain I have. He said if I take out the SCS I can never get another. I want to know if anyone has felt or heard that removing a paddle lead SCS is that painful after and that once removed another can't be implanted. At this point I'm just at a loss on what to do. Can anyone help?

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  • flyer1742fflyer1742 Posts: 1
    edited 08/07/2015 - 8:54 PM
    When those of you had your trial one,were you also on pain meds? when I did mine 8 was on pain med. My battery has gone bad, it replaced and I want to the trial again. Not on pain meds now as my last pain doc would not refill my prescription thus I went through a horrible withdrawal. No, not going back to him. I was never sure how bad the pain really was. This time I will know more. Thanks.

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  • I have non MRI compatible paddle leads at inserted via laminectomy at T8/9. Spoke to neurosurgeon a couple of weeks ago about whether they can be removed due to the MRI issue and he said they can't be. He said the unit and some of the leads can come out but the paddle has to stay because it is permanently scarred in. The paddle is the issue with the MRI because there is a high chance that it will dislodge and go through the spinal cord.

    If you have been told that the paddle can be removed I would recommend a second opinion before going ahead with anything. The surgery to have the leads implanted was bad enough - can't imagine how bad a surgery to remove the paddle.
  • Mrs_Step85MMrs_Step85 Posts: 27
    edited 08/08/2015 - 5:08 AM
    flyer1742 said:
    When those of you had your trial one,were you also on pain meds? when I did mine 8 was on pain med. My battery has gone bad, it replaced and I want to the trial again. Not on pain meds now as my last pain doc would not refill my prescription thus I went through a horrible withdrawal. No, not going back to him. I was never sure how bad the pain really was. This time I will know more. Thanks.
    When I did the trial I was given an RX for pain meds, I did not really take them, I think I took them the first day and maybe a few nights. My Dr gave me a script with no issue, I did not even have to ask, I have heard of others having the trial and not getting pain meds even when they asked. I think it depends on the Dr. I did not take anything on a daily basis, I could not function at my job on meds, so before the SCS I was dealing with awful pain where I could barely move. Good Luck!
  • GiffDroidGGiffDroid South Dakota/South Korea/Stuttgart GermanyPosts: 1
    Well.....I had my SCS removed about 4 hours ago, and it is mighty painful!! I'll update daily so you know how it goes.
    I say it is painful, but to be fair, it is a pretty invasive procedure. I had the Generator in my lower right abdomen/side. I had the paddles inserted fairly high in the mid spine area. The thing never did work right and I (this is my opinion and experience, ((DO NOT MAKE ANY DECISIONS BASED ON MY EXPERIENCE! Every person will experience placement and effects differently)) I need a fusion now. So, that being said, im hurting bad right now, but i am certain it will be MUCH bett er tomorrow. TTYL GiffDroid
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