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My messed up Stimulator Implant, but I don't want to give it up!

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Chronic Pain
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Posted 4/30/2014 3:44 AM (GMT 0)
Hi,

I am new to this forum and have not posted at other places so I don't know what to expect. I had a Medtronics Neurostimulator Implant on December 23, 2013. The unit has been great.

I have become satisfied in just setting it and leaving it on for now 24/7. I don't seem to even notice it at times. I don't have the bad problems with sleeping and the leg pain waking me up at every single second or feeling crippled. I still have terrible back pain which I just live with.

My stimulator took over 2 years to get my insurance to help with. In fact I was sent back to my surgeon who did my fusion some 17 years ago. He did another fusion in June of 2013 before the implant. I had L3 & L4 that was fused with L4,L5 & L6 fused originally (I have an extra vertebrae), along with Full rods each side screwed and pinned with bracing between all the way down now.

Things went well until this February. The 5th I pulled and or twisted my back getting out of my car and felt a sharp quick pain. My incision at the bottom had split about an inch at the small of my back. The next day I went back to my Surgeon and the PA stitched me up and put me on antibiotics. I went back the next week and the PA felt my split looked great and pulled the stitches out. That was February 12th.

The following week it split open again at the same place and the PA stitched me again and said he would leave them in for at least 2 to 3 weeks. A couple of days later it opened up below the stitches, like in a new place about 1/2" long now. From then on it has kept draining.

When I spoke with the Doctor's Office again, at this point, I was sent to a Wound Care Specialist. For the past month we have been changing ointments and bandages every other day. On this past Wednesday, April 23, 2013, the Wound Care Doctor said the ooze was getting discolored and not running clear and upon further inspection she could make out some wires.

Well to say the least I was sent back to my surgeon within hours and he said everything is coming out, even possibly my last fusion parts, rods, screws and all.

I am at a loss for words. Actually I am numb. I have no idea what to do. A total of 4 Doctors have told me that my Stim is coming out. I am scheduled for the surgery next Monday, May 5th.

Today the results came back from a culture from the last wound care visit. I found out that I now do have a Staph Infection also. I really wonder if this is unusual to develop a staph infection so late after surgery, or did I have it all along.

I realize that something was wrong to keep splitting open, but I had no symptoms or inflammation even last week that it was infected. I almost feel that the wound was left open too long. I had hoped they would have just re-cut and re-stitched everything back when it opened the 2nd time. I still have no outward symptoms of an infection.

I have looked to see what support might be available and found this site. Is this a typical resolve to my situation to just rip everything out, wait and start over? I have been recovering from 4 Hospitalized surgeries since June 2013. Another year of this is crazy.

I am told that after my surgery on Monday, that by the end of six months I should be healed up enough to go ahead and put everything back. I imagine I will be in a brace that whole time along with what ever pain meds I am trying to get rid of.

Will I even have an option with Medtronics doing another stimulator after all this? I feel I should just let them put me on another run of antibiotics, which I'm sure they will do anyway, but wait and see if it may possibly clear up and then heal.

Should I delay surgery for a couple of more weeks? I just feel things are going too fast and I need time to catch up. I am hoping that this forum might be a little theraputic and help me see things in a different light, any comments would be appreciated.
Posted 4/30/2014 4:31 AM (GMT 0)
Wow! You certainly have been thru a lot in recent months! Very sorry to hear that.

I don't have any knowledge about problems with hardware or the stimulator, but just wanted to let you know that I do understand pain and complications with spine surgery. It is so frustrating sometimes. It's kind of like, if the surgery and recovery had just been uneventful, I'd be back to living my life and not dealing with this crap!

There are people on this forum who have recently been talking about stim units and even some of the problems people have encountered with those. So, you may want to search some of the recent posts for more info, and to get the names of people you may want to contact on here for support, etc.

Also, I know you mentioned that "4 other docs" said things need to come out. Are they all docs working in the same clinic? If I were you, I might try to find someone else to get a second opinion from, someone who is an outsider and can give a fresh perspective. This is a big deal, very involved, and I'd want to get opinions from several docs before going thru with anything.

Ask a lot of questions and get as much info as you can before deciding what to do.

Boy, for not knowing anything, I sure rambled on a lot! Hope you find some answers and things get sorted out soon!
Posted 4/30/2014 6:04 AM (GMT 0)
Hi mugsdb! First, Welcome to HW/CP....but sorry that you had a reason to seek us out!

Well, it seems like you've really been through the ringer lately. I just wanted to offer my humble opinion - don't be rushed into anything you don't feel comfortable with. As long as you are on the antibiotics and it's not a 'life or death' situation where they say you absolutely need immediate surgery - put the brakes on for a moment. It sounds like the surgery to remove everything is a fairly complex procedure, not just 'simple' day-surgery stuff, so I would allow yourself to take a few minutes here and process it all. I would think that, short of an emergency situation, they would want to make sure that the active staph infection was under control before they opened you back up. Again, just my humble opinion - I'm certainly no medical doctor.

(Try to) have a peaceful day. :-)
Posted 4/30/2014 7:07 AM (GMT 0)
Hi Mugsdb,

Welcome to HW! I'm sorry to hear about what you are going through, but I am glad that you were able to find this forum for some support!

I believe that I may be able to help you understand what is going on/why your doctors are recommending the hardware removal.

Here's the deal: Hardware can seed infection, and it can be very difficult to control unless the hardware is removed. This is because biofilms can readily form on the surface of hardware.

A biofilm is essentially a colony of dormant, or metabolically inactive bacteria that are covered by a proteinaceous slime layer. This slime layer protects the bacteria from the body's immune system, and is also impenetrable by most drugs. Thus these bacteria are highly resistant to clearance by both the immune system and by antibiotics.

And although the bacteria in the slime layer are essentially dormant, small amounts of active bacteria are continually shed from the biofilm into the body. As a result, the active infection is perpetuated/the effects of the antibiotics are negated by preventing complete resolution of the active infection by a normal course of antibiotics.

Since your infection does not seem to be improving (and if anything, is worsening) with appropriate antibiotic treatment and wound care, it is likely that one or more of your implants are the source of the infection/are harboring bacteria biofilms. Therefore, the only real way to rid your body of the infection is to remove the source of the infection, ie. remove the infected hardware. And unfortunately, because there is no way to know which piece(s) of hardware is affected, all of your hardware must be removed. It is highly unlikely that the infection will be able to be resolved unless the hardware/source of the biofilms are removed.

Upon hardware removal, with a chronic infection of this nature, is common to treat for 6 mo with antibiotics. Then, once the infection has been completely resolved, it should be safe to re-implant new hardware.

Certainly not an ideal situation, but I'm not sure that there is really any other option. I completely understand your concern about being able to have your neurostimulator re-implanted. I too have a Medtronics neurostim, and I too had to fight my insurance for over a year in order to get the trial/implant sx approved. And unfortunately, I can't give you any insight as to whether or not you will have to go through the whole fight for approval again. But I think that it is important that you get this infection cleared up. It sounds bad enough to begin with, but if you leave it untreated/uncontrolled, there is always the risk that it will get even worse/spread. At which point you could be looking at some pretty serious consequences.

I know that it is scary. But if 4 doctors have all agreed that the implants need to come out, it sounds like there is no question that it is your best option/what needs to be done. Hang in there! You will get through this!!

Skeye
Posted 4/30/2014 7:02 PM (GMT 0)
Mugs thanks so much for reposting. I am so sorry about what is going on but I am with Skeye on this plus my own PM dr saying the same thing about staph infections & metal. I understand how you feel, but your well being is more important than anything.

Take care.
Posted 5/18/2014 2:40 AM (GMT 0)
I just had my neurostimulator put in 4 weeks ago Thursday. Monday I was diagnosed with an infection where my battery pack is. Right now my dr is trying to let me fight the infection but he said if it's not better in 10 days then they will admit me and try to do IV antibotic but that it is a high possibility I would have to have it removed. I'm just praying right now bc my stim is working great for me and I really don't want or need to have to go thru another surgery much less 2.
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