Removal of SCS

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Date Joined Jul 2008
Total Posts : 2315
   Posted 10/5/2014 8:41 PM (GMT -7)   
Well, I'm finally getting this crazy SCS out Wednesday. I guess I'm glad to be getting it out, but the surgeon only met with me once & told me he wasn't sure he would take my case. 8 weeks later, his office called & said he would take my case. The problem is that he won't meet with me or talk over the phone with me to tell me what all he's planning to do (it's not just a simple explant -- I've tested positive for local infections where one of the incisions reopened after 4 years [pseudomonas & staph]; my last blood work came back positive for some type of fungus; and the bacteria have created at least one extra tunnel of their own making, possibly more).

To make things worse, I just found out today that the surgeon booked the procedure as "removal of Pain Pump". Not inspiring confidence in him. He has an excellent reputation, but I'm just really concerned since I don't even know what all he's doing. I have a roaring spinal headache from the myelogram my neurologist ordered on Thursday (no blood patches allowed until after surgery due to risk of infection). I've been on antibiotics for the past 10 days that require me to wake up in the middle of the night to take them. I have some kind of neurological disorder (the myelogram was to rule out cauda equina -- results due tomorrow evening) that is causing intermittent numbness, paralysis & fecal incontinence. I've put on a mountain of weight due to all these doctors keep ordering me on bed rest. I know I am overtired & way too crabby, but I just want to know what to expect with this surgery.

I know it is scheduled to last 3 hours & they plan to keep me overnight for observation & that's about it. I read a couple of old threads on here about explants -- mostly due to lack of pain relief or errors with the implant surgery. I've had this open wound on my back -- incision spontaneously reopened 4 years post-op -- for nearly half a decade now. The surgeon's office told me the explant/wound work was "WAY more involved than getting the SCS put in", but they couldn't explain what that meant.

Has anyone ever had an infected/colonized SCS removed? What all did they do besides pulling out the hardware?

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Date Joined Jun 2008
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   Posted 10/6/2014 1:24 AM (GMT -7)   
Somewhere in archives there should be a few posts about removal with complications because I remember several specifically! Removal versus placement takes longer due to scar tissue, leads migration, and tissue that has grown to the actual leads and unit. They have to be surgically removed a tiny bit at a time so not to damage more tissue and nerves. It's a very slow and tedious process! The infection is also an issue since the area may require debreedment of tissue and if you have an open wound going on that long it's possible it's grown into a fistuala. Those are some of the issues the surgeon will face and the reason we tell folks here to think long and hard before scs and pump implant,it's not always a cut and dried procedure and complications can and do arise from having anything foreign implanted. As for him scheduling it as a pump removal? It would be nice to have the surgical team on the same page but the procedures are pretty much the same.

It has to be a better solution since that open sore is apt to always be a source of infection and that's dangerous. I'm not sure if they will proceed until they get some control over the infection and personally I wouldn't want them too!

I would however not let him operate on me until he talks to me but I know many surgeons who don't!

Good luck and I certainly hope all turns out well for you!

Knowing when to walk away is WISDOM
Being able to is COURAGE

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Date Joined Feb 2003
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   Posted 10/6/2014 8:36 AM (GMT -7)   
Good luck on getting the unit out. I know you have had this infection problem far too long. A big concern for me would be the persistent infections. Are the drs running out of antibiotics that will kill the bug. I imagine you have built up quite an immunity over the years.

I am sure the removal would be much longer of a surgery with all of the clean up & scar tissue removal. Let us know what you decide to do.
Moderator Chronic Pain & Psoriasis Forums

Veteran Member

Date Joined Aug 2006
Total Posts : 9657
   Posted 10/6/2014 9:12 AM (GMT -7)   
So very sorry your going through so much and with a spinal headache, a big ouch...I had a spinal tap last year which resulted with at least 2 blood patches and it was so not worth it as one of my medications can interfer with the testing and they never told me that. Sorry got side tracked, sure hope the surgery goes good for you.
One of the reasons I've said no to the SCS is because I get sick easy, (had pneumonia 4 times) and I'd be afraid of the infection risks like your having as I'm prone to infections and that the leads would migrate...
Pm wanted to do the SCS and I said no, only neurosurgeons should be doing these, in my opinion!
Many Prayers and well wishes to you and my fingers are crossed that the ex plants gives you better health...
Do read the older posting on the SCS's there are many.
I think they have a 50- 50 success rate, from everything I've read and I have read a lot on them, but not enough to convince me to get one...
Keep us posted on how your surgery turns out. okay...will be thinking of you.
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

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Date Joined Jul 2008
Total Posts : 2315
   Posted 10/6/2014 6:32 PM (GMT -7)   
Thank you all for your support. My spinal headache is much better today. My PM called me last night due to test results coming in with yet another fun infection (yay me! :P). He did tell me that the nitwits as his hospital (my words, not his) gave me the exact opposite of the instructions I was supposed to get to avoid/treat a spinal headache. Apparently, you're supposed to lie on your stomach. The sheet I got said to lie on my back with head at 30% incline. Turns out that was making it worse. I got almost 7 hours of sleep last night & am feeling so much better. :) Thinking maybe the spinal headache might be gone by tomorrow.

The surgeon did call me today; so did one of the anesthesiologists. I'm definitely feeling more confident with the anesthesia part of it. They said they could skip the Versed (I have a HORRIBLE reaction to it -- actually makes me more anxious, rather than less). Also said I can take my regular pain meds the day of surgery; surgeon had previously told me they would deal with the withdrawal if they needed to, but I needed to pull of my patch & not do any pain meds for 14 hours pre-op. Seemed like the dumbest plan ever. So glad that's not the case.

I really have lost just about all faith in the surgeon. He's not listening to me at all about how much scar tissue is up there at C2. I've had 3 surgeries up there. It's basically just one gigantic scar-y mess. He thinks he can get the SCS out (leads at C2, leads at L5 & stim in my right buttock) in 30 minutes flat. I had to work really hard not to laugh out loud. He said he expects it to take 30-40 minutes to get the thing out & then 10-15 minutes to debride the wound & install a drain. My PM has taken out several non-infected SCS'es and says best case would be 2 hours. There are 4 sites. The first 2 won't be bad (I assume), but then he has the wound site & the leads that are scarred in place up in my neck. I haven't wanted to get surgery to do anything about it, but really the scar tissue up there has run amok. I guess he'll find out when he gets in there. Serves him right for being such a jerk about this whole thing!

Chart- my SCS was a success. It works fine, helped the pain a lot. It closed up fine. My PM has done about 200 of them & I'm the only one who got an infection. My neurosurgeon actually has a higher rate of infection for his implants than my PM does. And the weird thing was, it didn't have this issue until 4 years after the implant. So bizarre. The only problem I did have when it first went in was massive overgrowth of scar tissue. I went to dermatologist for kenalog shots & it seemed to settle down. Then, out of the blue, it opened back up again. Probably just a freak thing. Could have just as easily been from the kenalog shots. It was either getting an SCS or have fusion surgery, which carried even more risks. I don't even want to think about what getting it out will mean in that regard.

Post Edited (Tirzah) : 10/6/2014 7:36:16 PM (GMT-6)

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Date Joined Aug 2006
Total Posts : 9657
   Posted 10/7/2014 4:28 PM (GMT -7)   
I have a greater rate of infections, had pneumonia 4 times in my life already each time required an x-ray as they could'nt hear it. Docs all say I have a bad immune system, had hiv testing done plenty of times and it's not from that... My neuro wanted to do a cervical fusion with the bells and whistles but even he was scared because of my infection rates, he did give me ER instructions should I need to go there, and he's considered tops in his field... I even have reactions to injections and they arn't sure what causes them, some injections will go good others will cause extreme burning pain...So My PM brought up SCS a few years ago and well I just can't risk it...My Ra Doc won't prescribe anything more than methotrexate because of the risks of pneumonia so any risk is a higher risk for me...So they keep me functional on norco and muscle relaxers and when things get worse for me then I'll probably get a stronger pain medicine possibly...

Thanks for your explaining this to me, Prayers for a good surgery! Keep us posted on your surgery, I hope you have a speedy recovery, maybe start on vitamin C after the antibotics to boost your immune system....
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

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Date Joined Jul 2008
Total Posts : 2315
   Posted 10/7/2014 5:31 PM (GMT -7)   
Wow, Chart, sorry you have it so rough. I can't imagine.

The nutty thing is that my immune system is in tip-top shape. I very rarely get sick & the cultures from the localized infection came back positive for polymorphonuclear cells, so my body is fighting the regular staph infection. The problem with these implants -- whether pain pumps or SCS or screws or cages or whatnot -- is that they create a special magical playground for bacteria. No one was willing to take my SCS out until we started doing the local wound cultures because all my blood work came back pristine & I tested negative on the nasal swab for staph carrier.

I got a whole education about the difference between an Infection & a Colonization.

An infection is something your body can fight (or should be able to fight). The little bacteria swim all over the area, reproducing & wreaking all sorts of havoc on the body until the happy little white blood cells (in my case, polymorphonuclear cells) come along & kill them all off -- or at least beat them back into submission. Infection occurs in natural tissues.

A colonization is not something your body can fight (barring a miracle). The little bacteria permanently affix themselves to a synthetic surface like an implant. They work on these cycles so they can remain "invisible" to the white blood cells. They will reproduce like crazy, making up to 10 million bacteria children each in under an hour, and then go back into hibernation. The body cannot fight them while they are in hibernation. Furthermore, they can live for many years -- as opposed to the days or weeks that a typical bacteria lives -- when they follow this hibernation-reproduction cycle. The colonization bacteria themselves do not make you sick. They only wake up long enough to reproduce & then go back into hibernation. The problem is that the child cells they produce don't attach to the implant (usually) and that is what causes the infections. So my body will kill off the entire infection, only to have it come back again the next month. Over time, my body has started to get more worn down, so they've been more aggressive with the oral antibiotics. I worry about the antibiotics causing me more problems than they solve and at the end of the day, they are no more capable of destroying a colonization than my on WBC. The only way to get actually get rid of a colonization is to remove the colonized hardware.

I wouldn't ever recommend a SCS to anyone that has a non-surgical option that works for them. It is surgery & that is never without risks. I was in my 20's when I got the implant and rarely caught so much as a cold. I'm still fairly young & healthy. But no surgery is without risk. I've felt that way at every step of this process. When a person has a choice between a more invasive surgery & a less invasive surgery (like an SCS or a pain pump), I'd almost always recommend the less invasive procedure. But when you spend the better part of each month in the hospital because the pain is so out of control & your body can't tolerate a meds increase, the SCS can be a godsend. I believed that when I got the implant put in & I believe it to this day. It's not for everyone. It sounds like it may never be a good option for you, but I am still grateful for the years it gave me where I was able to return to full-time work, spend time with family & friends, and enjoy life. :)

Thanks so much for your kind words. PCP told me that Zinc is more effective than Vitamin C, so that's what I do now. I also got this awesome hand-held vaporizer that Vick's makes last year. I went down to volunteer with the Disaster Relief team in Washington, IL after the town was leveled by a series of F4/5 tornadoes & everybody kept coming down with pneumonia. I tell you, though, that little handheld vaporizer was amazing! It kept me at 95% for the whole 2 weeks, even while helping to cook 2,000 meals a day from scratch out in a tent. Definitely going to break it out tonight. Just came back from doctor & found out I have early states of Viral Bronchitis. Surgery is still on, so I will be bringing my little portable vaporizer with in the car to try to fight this thing back. I'm sure it's all the time I've been spending at the hospital. Too many sick people there! :P

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Date Joined Mar 2011
Total Posts : 1276
   Posted 10/7/2014 7:57 PM (GMT -7)   
Hi Tirzah,

I've started replying to you goodness how many times now, keep getting distracted and losing the post.

I've never had SCS hardware removed due to infection, but I have had a lead removed 5 or 6 years post-op after it stopped working for no apparent reason. It was heavily scarred into place and the doctor had to break down a lot of tissue to get it out. He DID do it quite quickly - my personal feeling is that he went in too hard and fast, as I had a lot of pain with it (I was awake through the whole surgery as mine was a replacement) and ended up with extra leg pain plus weakness after due to what he ended up deciding was nerve root bruising from the removal of scar tissue.

Unfortunately I agree with you that your surgeon is kidding himself about the amount of time it's going to take - and I hope he works that out with no detriment to yourself.

Wishing you all the very best.

Moderator - Chronic Pain Forum

Full body CRPS, Dystonia, EDS, Dysautonomia (multiple issues) Osteoporosis, Fibromyalgia

SCS, Intrathecal Baclofen/Morphine pump, multiple oral meds - feel free to ask.
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