Spinal Cord Stimulator Lead Moved

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New Member

Date Joined Jun 2012
Total Posts : 10
   Posted 6/23/2012 3:28 PM (GMT -6)   
I have had my SCS for about a year and in the last few months the lead has moved. It was put in for my left hand RSD and worked but now the lead has shifted and has apparently moved up and is causing my right hand to be totally numb. I had already lost my left hand now due to the lead shifting I can't use my right. Within the same time I also started having extreme problems walking. I feel like my legs are not connected and have little control over how they move, Is this possibly connected to the SCS lead moving or is it a new problem. Can a lead implanted so high on your spine cause leg problems. I have got an appointment in a few days with the doctors that originally did the SCS trial and recommended a Nuersurgeon for the actual implant. Will the pressure of the lead on the previously good nerves cause permanent damage and how long does it take to have permanent damage if that is the case.
  If anyone has any feedback or similar problems with the SCS please let me know. I don't think I have ever been as scared in my life as I am now. Not in war or in law enforcement. At least I could somewhat control my situational outcome by my own actions but now I am the mercy of doctors that only seem to care about their income and not being sued. I am sorry for the rant please forgive and thanks to anyone with information.

Veteran Member

Date Joined Jan 2010
Total Posts : 3557
   Posted 6/23/2012 5:40 PM (GMT -6)   
Hi there...

I am sorry to hear about your situation....Just wanted to say that sometimes it can be slower on the boards over the weekend...so just in case you don't get too many responses.

I personally don't have any experience with the SCS but have heard that the leads moving certainly happens at times.

I'm glad that you have an appt. with the Drs. who put in the unit as that is what I was going to recommend that you see them right away.

Does the unit have a 24 hour number to call for questions as well? They probably can't do too much as they can't give actual medical advice....but it's worth a shot.

I would think that if the unit itself or leads are pushing on a nerve to cause it to be numb...then worse case scenario is to take it all out. It usually takes quite a while to have any type of permanent damage so if you just noticed this recently then that is good.

Obviously none of us here are Drs. so just giving thoughts/suggestions...

Please update us when you go see the Drs. and what they say...
SB and "the pup who snores loudly" 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006

Veteran Member

Date Joined Mar 2011
Total Posts : 1276
   Posted 6/24/2012 4:56 AM (GMT -6)   
Hi B38 - I didn't realise that you were another of us with CRPS/RSD. I'm sorry you're a member of that particular club. I've had it 13 years.

On SCS - we have got one member, Kristi, (her username is Rhaevin) had the SCS implanted for upper body CRPS. I know that she has had a lot of problems with shaking and difficulty walking when she has hers turned on.

I have full body CRPS, but only my legs covered by the stim. I do have problems with that disconnected sensation, and my legs will twitch or buckle - but I find this is only when I have the unit turned on. If it's off I don't have those issues. I know it sounds like a really stupid question, but do you improve with your stim turned off?

Hope your appointment yields some answers.

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

New Member

Date Joined Jun 2012
Total Posts : 10
   Posted 6/24/2012 2:33 PM (GMT -6)   
I turned the SCS off and the problems became an exageration the same symptoms when on. The feeling of disconnect is the worst thing. Why does the medical profession not provide a better program of informing patients of potential problems. Oh stupid me of course its money. I think this forum should be a requirement for anyone even remotely considering the SCS path. I thank you very much for your quick response. Is there another Thread that is more appropriate or where would you suggest I monitor.
  Thanks again  !!!!!!!!!!!!!!

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 6/24/2012 2:39 PM (GMT -6)   
     Hello B38!
         I will be of little help on the SCS issues, but try this link. It is actually the first page I came to using our search feature located here in the upper righthand corner of this page.
     Good luck!
        SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

New Member

Date Joined Jun 2012
Total Posts : 10
   Posted 6/24/2012 2:43 PM (GMT -6)   
Thanks I will try it.
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