Neurostimulator Removal

Hi, I've been looking up information about neruostimulator removal for hours now, and found this forum. I need to have my neruostimulator removed and was wondering how complicated the procedure is.  I want total removal with nothing left behind. The stimulator was placed in as an out patient  procedure, is it the same for the removal or is it more difficult?

I had a partial laminectomy in 2008. I experianced serious pain afterwards and sought a pain specialist who after months of injections recommended the medtroinic neurostimulator.  I wanted off pain pills and to go back to work so I agreed. Everything went well and in April of 2010 I had the stimulator implanted.  It was WONDERFUL.

However soon afterwards and seeminly unrelated I was diagnosed with a condition called Alpha 1 Antitrypsin Protein Deficency, which is a genetic condition that causes many other symptoms, but is basically known as genetic COPD/Emphazema, and non alcoholic cirrhosis of the liver.  To manage the decline of health I receive a weekly infusion of a protein made from human blood plasma. It became difficult to start an IV every week so I opted for a Bard Power Port/med port. After a series of problems with it, I ultimatley landed in ICU hanging onto life by a thread this past July due to Septic Shock after the med port became infected and the infection spread through my blood into every organ and tissues.

At the time the biggest concern was removing the port and picc lines that had been in my blood and tissue and clearing the massive infection. No one, including myself or my family, stopped to think that the neurostimulator most likely would have been contaminated too. Since my release from the hospital I've been sick almost constantly, with the same bacteria that caused me to go septic. I also started having SEVERE back pain again and test showed that I was suffering further nerve damage. It turns out the stimulator and leads are migrating, and most likely have been since I had it put in. During the consult with my new neruosurgeon he "stumbled"  into the notion that the stimulator would of had to been compromised by the sepsis and should have come out in July. Follow up with the rest of my medical team lead them all to the same conclusion. However, the new surgeon and everyone else involved says I need to get the removal scheduled with the surgeon that implanted it in the first place. That has become a head ache as I'm jumping through endless hoops to prove it has to come out.

I have 3 major reasons to have it removed and not replaced 1) It's migrating and causing damage to my nerves 2)When I turned it on it caused 100x more pain then it helped int he last 6 months and 3)It's infected, its the only thing left that could still be harboring this bacteria. I nearly lost my life to the bacteria once, and as my infectious disease doctor says, I won't survive a 2nd round. My medical picture is much diffrent today then it was 2 years ago in a lot of ways. At this stage I am more afraid of having a relapse and getting sick again then I am of the pain the stimulator isn't helping anyway.

So any information about removal experiances from others would be greatly appreciated.

Hello Kid!

Welcome to the CP forum!

Sounds like you have had a rough time of it there! I'm not very knowledgeable on the SCS units, but have heard from members several times, that surgeons are reluctant to remove the leads because of the scar tissue issue…and it may cause more problems in the long run.

However it sounds like your's is a no brainer, and needs to come out. I would think that your PCD would send the surgeon a letter stating the urgency on this. Is that a possibility? To me, it sounds like it is a health risk to leave it in….and could be deadly if not removed.

I can see the reason that other surgeons do not want to remove someone else's work, especially if it is very complicated and can cause even more damage to the area, and then it may become a liability issue. I realize you are out of the hospital, but are you still being treated for the infection?

I hope you find a solution to your problem soon, and we are interested in how it turns out.

Take care, and again,…"Welcome"

SE

Hi comeback kid....i had to have my stimulator taken out about three months ago.  I called all the nero surgeons around my area and they all told me to go back to the doc that put it in.  I guess that is what u have ran into to.  Mine was put in by a anisteologist they put mine in without cutting except for where the battery pack is under the skin. your problem is different than mine because i wanted to keep mine but this doc couldnt get mine to the place it had to go because he couldnt get it thru scar tissue from previous back surgeries and if he couldnt get it put in then he wouldnt make all the money they charge i orginaly wanted a nero surgeon to put it in but he said scar tissure would be no problem because he knew everything well anyway the only way he could get it to where it needed to go was thru my tail bone so my tail bone has been killing me every since he did it that is why i didnt want him to take it out and wanted a nero surgeon to take it out then put it back in but not thru my tail bone and i finally found a lady nero surgeon that did a great job had less pain than the first time but she did have a hard time getting the wires out and finding where they had been tied that is why the other docs wanted the orginal doc to take it out cause he would know where the wires had been tied.  your scs hasnt been in as long as mine had been so the wires should come out with no problem was yours put in by a nero surgeon or a anstelogist the nero doc screwed my wire in place but the sleep doc just hooks it on the nerve or that is how it sounded to me.  you had a trial one put in didnt.  did your doc change the wires from the trial stimulator to the permenant stimulator. mine did but i have been told that some doctors use the same wire for both so it doesnt have to be moved and take the chance of losing the spot where it was working.  i dont know how my nero doc found the right place to screw the new wire in but if i need mine out again a nero will have to do it to remove the screws but i think they will just leave them wires and all i would think but they cant do that with yours.  how come your orginal doc wont take yours out doenst he belive u about the infection.  did yours help enough to get off the pain pills mine helped some but i still take the same amount of pain meds and after fifteen years of pills i am really tired of them.  i think you are the only person that has had more problems and bad luck than i have had good luck on gettting yours out and i hope it doesnt lead to any more problems seems like once u start down this road it is never ending.....bye for now Alan

I have a implant also, looking for removal..anyone have issues with loss of nerve function or bladder control issues?

I don't have any implants, but have a suggestion for some more information. How about calling Medtronics and ask to speak to someone there? Many medical corporations have a patient advocate, ombudsman or representative. Perhaps they do as well.
http://www.medtronic.com/corporate/contact.jsp

I presume, though, that they may not give you the whole truth, but a sanitized account. Anyhow, there may be some information to gain.

Welcome to all three new posters.

On the subject, I have been looking to get my neurostimulator removed but symptoms are not that bad yet. I have off and on burning from the leads and the device itself but every doctor seems to be indifferent to my complaints. I* would like to have it removed before it becomes a big problem and I suffer serious nerve damage or a serious infection. Anyway I should play this, I thought abought sabataging the thing, but that is way too risky for me and dont have the lack of maoral scruples to do something like that. Maybe I can up-play some of my symptoms. Can anybody help?

This is a workers comp case, and even the insurance companies doctors suggested I have it removed. Prompt response wanted

I had my stimulator removed, leads and all, and not by the original surgeon. It was done as an outpatient same-day surgery. While the recovery wasn't exactly comfortable, it was less painful than the original implantation and an overall shorter convalescence period.

I live in Iowa, though I had the removal surgery in Maryland. It was a dual purpose surgery; the stimulator was removed and work was done on damaged peripheral nerves. The surgeon who removed it was a dual-licensed plastic & neurosurgeon. As to the last question, it was in place a little over a year.

Hi Dottie and welcome to the chronic pain forum. I am sorry to hear that the stimulator was not a success for you. That seems to be something that can go either way from what I have read from different people that have come to this forum with one. I am assuming you are all set with a dr that is removing the unit. Will he be removing the leads too? So many drs will not remove the leads because of problems with scar tissue and migration problems.

Dottie if you have not made an intro post here at the forum please do so, that way all of our members will see it and be able to give you a proper hello and welcome aboard.

Please let us know when you will be having surgery.....Take care....Susie

Hi again Dottie, to start a post look to the left here where it says Start New Post, click there, fill in the heading, perhaps new member having SCS unit removed, then click again and a larger space will appear and just start typing away.

What if you don't mind me asking is Factor II? I am not sure how long the recovery will be, I am guessing maybe a couple of weeks. Good luck on your surgery and please keep us posted.