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Spinal Cord Stimulator may be the cause of new pain

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Posted 10/17/2012 12:15 AM (GMT 0)

I was diagnosed with RSD in 2004 and for 7 years relied upon nerve blocks and narcotics to "try" to manage my pain.  In 2010 I did a trial implant of the BSC Spinal Cord Stimulator as I had become opiate resistant and the pain meds no longer gave me an acceptable level of relief.

The implant was in August of 2010 and I'm having new pain around the battery implant site and also some upper back pain close to the scare where the leads are implanted (T-7 and T-8).  I noticed earlier this year pain in my lower back and sciatic area and the upper pain has been there for about 3 months.  I have a pacemaker so the only test my spine doctor can to is a Mylogram and it shows nothing wrong and the leads are in the "proper space".  The doctor I see now is not the same doctor that did the implant and when I mentioned removing it because I don't use it much anymore, he seemed surprised I would ask that.  I told him its like having a 1,000 bees under your skin, it "changes" the pain not eliminate it.  I can't lift my affected leg well when its on either so the only time I even turn it on is when I'm sitting for over a hour.

I have been more active this year than ever before and I'm afraid my leads may have moved, the battery is definitely "sticking" out and almost feels as if 1 edge may work its way thru the skin.

Has anyone else had a stimulator move on them and what did you doctor do?  My upper back pain is unbearable, I can't sit, I can't lay, I can't sleep, etc.

Posted 10/17/2012 4:26 AM (GMT 0)
Hi ikimmia, and welcome.

I've had CRPS/RSD for 13 years and also have a SCS, though mine is of a different brand. I'm sorry that you're now having issues with yours - was it helping prior to this? I've had a lot of problems too - not an uncommon thing, I think - but for me it relieves that near-unimaginable skin burn/hypersensitivity stuff, which outweighs the problems.

What you should maybe do is write some notes down for yourself that you can take back to your doctor, and also for you to have a think about yourself -

The pain for example - is there a difference between the pain you feel at the battery site and the pain you feel around your leads?
Is the pain present all the time, or only when you have the unit turned on?
Does it get better/worse if you're in a certain position (lying/sitting/standing)

Something else - you said the battery is "sticking out" but also said you've been more active this year than ever before... Have you lost weight with your increased activity since the implant? That would certainly cause the battery to stick out more just because you've got less fat between it and your skin, and can cause it to move within its "pocket" under your skin. This has happened to a friend of mine - she's waiting for her doctor to re-site her battery because it's causing a lot of discomfort and pain for her. I've had similar problems as you with it sticking out, but that part is not so painful for me.

As far as the leads go - has your BSC rep done a "diagnostic" on your unit? This will show up if there are any damaged leads, leads not working, leads 'leaking' current... this last one is certainly very painful, because it's stimulating the wrong tissues. Some of it might be improved with further programming too - if you've not already tried that.

Best of luck.

Laura
Posted 10/31/2012 8:03 PM (GMT 0)
Thank you for taking time to reply to my post, I never knew that our stimulators could "leak" current and maybe this is my problem with my upper back (T7 and T8) where my leads are.  What is causing most of my new pain is when I lay on my "good side" the upper back is so painful I can barely tolerate it and it makes the pain in my left hip and down the leg into my foot worse also.

Sitting hurts, laying hurts and standing hurts.  I just can't get comfortable at all, I usually spend my waking hours pacing the house trying to keep my mind busy. 

I will contact my rep for the SCS and have them check it or leaks.  My new spine doctor seemed unconcerned that when I sit my battery feels as if it may pop out from under the skin and he mentioned weight lose as a  culprit in the movement.  I had PT for 3 months this year and did a alot of exercises for my sciatic nerve and the glutes are more firm than they have been in years so maybe that is adding to it.

With so many problem areas and so many different doctors working on me I never know what to pursue as a viable action plan but will start with the stimulator being tested and will post an update whenever I have news to report.

Hang in there, I know you deal with a lot each day of your life also.  I will keep you in my prayers and please do the same for me!

Posted 10/31/2012 9:43 PM (GMT 0)
I had my stimulator removed a year ago. It wasn't helping my pain at all and I didn't want anything foreign to stay in my body when I wasn't using it. My doctor was able to code it in such a way that insurance paid for its removal.

Good luck!
Michele
Posted 11/1/2012 3:13 PM (GMT 0)
I think I really want mine out also but the doctor acts like he doesn't want to do it, probably because he isn't the one that did the original implant. I use mine only when I travel for 4-5 hours per month and like you, I don't want anything foreign in my body. At the time I had it implanted, I was opiate tolerate and my pain was so bad I couldn't even get out of bed so I felt as if I had no other option.

The marjority of my pain has always been in my ankle and foot, to knock out the pain I feel as if I have 1,000 bees under my skin flying in a mad frenzy when the stimulator is on. Others I know that have back pain love the stimulator but I'm just not a happy camper right now.

Thank you for your reply and take care!

Kimmi
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