Neurostimulator Removal

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comeback kid
New Member


Date Joined Dec 2011
Total Posts : 1
   Posted 12/30/2011 2:25 AM (GMT -6)   
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.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1173
   Posted 12/30/2011 3:00 AM (GMT -6)   
Hi Comeback kid, and welcome to Healing Well. What an ordeal you have been through :( I'm glad you've found us.

If there was any question at all of your SCS being compromised, I'm surprised that you're having to fight to have it out. I have had a friend just recently had hers become infected - and was told there was no choice but to have it removed. Why does it have to be taken out by the surgeon who implanted it? I would have thought that any doctor experienced with the SCS units would be capable of removing it?

As for the surgery itself, I would guess that it's probably an overnight procedure but I'm not sure. I've had my SCS replaced - because they cut the same area open, it can be quite painful. I also had a lot of swelling and formed a seroma (fluid pocket) that the doctor had to drain. If there is a question of yours likely being infected, I'm guessing they will want to be very, very careful. I had to have a migrated lead removed and replaced on two occasions and that DID hurt - the leads scar into place and when they break down that scar tissue to get the leads out it is sore.

All the best, and please do keep in touch.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4994
   Posted 12/30/2011 12:00 PM (GMT -6)   
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 wink
Moderator Chronic Pain Forum

Weekly Quote!

"I hope to be the kind of person my dog thinks I am" author unknown

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 12/30/2011 1:25 PM (GMT -6)   
Welcome to the new Kid on the block. LOL. I am glad you found us but very sorry it is under these circumstances. You have been thru quite an ordeal and like you say very life threatening. I don't understand how it can be so difficult to find a surgeon to remove your scs. Your doctor said you won't survive another round of septicemia. I sure hope this gets straightened out for you asap.
I am sure they would have you stay overnight at least and give you some iv antibiotic coverage to make sure you will be ok and to monitor you.
Please keep posting and let us know how you make out.

Take care
Suzane

rsdbadfoot
New Member


Date Joined Dec 2011
Total Posts : 2
   Posted 12/31/2011 2:25 AM (GMT -6)   
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

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1173
   Posted 12/31/2011 4:48 AM (GMT -6)   
Hi Alan and a warm welcome to you.

My stim too only helps some elements of my pain - I'm actually on MORE pain meds now than I was when I had my stim implanted, but I'd not be without it because it gives relief from the allodynia and extreme hypersensitivity associated with CRPS/RSD.

Can I invite you to start a new topic up top and introduce yourself so that we can get to know you :) I'm guessing from your name that you also have this beast of a disease?

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

Robin113
New Member


Date Joined Jan 2012
Total Posts : 3
   Posted 1/25/2012 12:09 PM (GMT -6)   
I have a implant also, looking for removal..anyone have issues with loss of nerve function or bladder control issues?

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4994
   Posted 1/25/2012 12:16 PM (GMT -6)   
 
      Good Morning Robin!
 
           We want to welcome you to the Chronic Pain forum!
 
         However, lets have you start your own thread by clicking on the "Post NewTopic" button, and introduce yourself there. You will get a lot more attention by members this way.
 
    Hope to see you there, and if you have any problems doing so, just holler back at us, and we will see to it you get there.
 
   SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 800
   Posted 1/25/2012 12:36 PM (GMT -6)   
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.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

dmack13
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/10/2012 1:08 AM (GMT -6)   
comeback kid,
I suggest you search the yellow pages or an on-line search engine to help you find a doctor that will correct another doctors work. I live in Houston and found a doctor with the Fondren orthopedic group that will fix other doctors screw up. I know its a pain in the butt, but keep trying. If its possible, I would suggest contacting the Fondren orthopedic hospital and see what they can do for you. Hope that helps.

dmack13
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/10/2012 1:15 AM (GMT -6)   
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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11420
   Posted 4/10/2012 8:53 AM (GMT -6)   
Hi DMack as far as I know no one has had the leads removed because of the scar tissue formed around the leads. The drs tend to think this is too risky and would lead to further complications trying to remove them. Apparently once these things are implanted it is very difficult getting them removed.

Good luck.
Moderator, Chronic Pain Forum & Psoriasis Forum

OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 115
   Posted 4/10/2012 10:59 PM (GMT -6)   
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.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11420
   Posted 4/11/2012 10:51 AM (GMT -6)   
GCoin you are the first that I know of that has had everything removed, good for you. What state do you live in? Also was it an orthopedic or general surgeon that removed the unit? How long had your unit been in place? Sorry for all the questions but would like this info from you. Thanks
Moderator, Chronic Pain Forum & Psoriasis Forum

OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 115
   Posted 4/11/2012 12:17 PM (GMT -6)   
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.

dottie9999
Regular Member


Date Joined Oct 2012
Total Posts : 73
   Posted 12/28/2012 4:11 PM (GMT -6)   

Well my approval just came thru to have my neurostim removed.  I started having dry heaves (not vomiting) 1mnth after implant date 072310.  contacted Dr they didnt feel it was the implant went to sooo many dr's i lost 70#'s and now i can't sleep due to the pressure from the generator and my pelvic bone.  It stimulated my nerves i now have pain from the top of my head to tip of toes on left side it travels, pulsates triangulates.  Dr @ 1st tried to have the smaller generator i told him no way i am not a success for this. 

I did have radio frequency neurotomy that worked for my pain on my lower back.         


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11420
   Posted 12/28/2012 7:06 PM (GMT -6)   
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
Moderator, Chronic Pain Forum & Psoriasis Forum

dottie9999
Regular Member


Date Joined Oct 2012
Total Posts : 73
   Posted 12/28/2012 7:28 PM (GMT -6)   
Thank you for the info where do i go for the introduction post?  Removal scheduled for 010413 6am not sure if removing leads.  I also was advised I have Factor II.  I would like more info on recovery time from the removal i was hoping a few days.    

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11420
   Posted 12/30/2012 10:34 AM (GMT -6)   
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.
Moderator, Chronic Pain Forum & Psoriasis Forum

dottie9999
Regular Member


Date Joined Oct 2012
Total Posts : 73
   Posted 12/31/2012 10:45 AM (GMT -6)   
Factor II is a genetic clotting disorder.  Both parents carry it however I got 1 good gene & 1 bad gene.  My blood is thick & prone to blood clots. 
I take 4mg Folic acid daily to help bring down my homocysteine level in my liver.  I will go to the post as introduction.  I need to contact Dr's ofc to find out if they are removing the leads too. 
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