Hi Poohbear and kpainc - welcome both of you.
I'm sorry that neither of you have had success with the SCS. Reading both your stories makes me quite angry - the SCS isn't an option for everyone, and I may be wrong but it sounds as though neither of you was really given a good understanding of what you were doing before you went ahead.
Poohbear - I'm sorry that you're experiencing pain like this. I'm in much the same situation - my primary problem is a disease called CRPS, but I have numerous compression fractures and some disc bulges that cause intense pain when you sit.
As far as your Stimulator goes, it does take a little time to get the full effect but I'm not sure why they would have told you that the permanent implant would work on your lower back if they couldn't get any stimulation there with the trial leads. I'm also wondering why your doctor even allowed it to go ahead with you only having 30-40% relief - the usual guideline is a minimum
of 50% and ideally 60-70% relief from a trial if a person is to be considered a good candidate for the permanent implant.The reason for the trial is to ensure that they can get coverage in the required areas and that the stimulation is acceptable - sometimes it can be unpleasant, or even downright painful. The extra scar tissue does make for more painful surgery, and I'm sorry that yours was so bad. I've had my stim for 5 1/2 years now and including the trial had five surgeries for it, plus one to put in an intrathecal pump. Most of mine have been fine - my trial and first permanent implant were only mildly painful, barely bothered me at all - I took a couple of paracetamol the second day I think, and then I was fine. My last one was bad - a lot of torn scar tissue and bruised nerve roots.
Are the back and leg spasms something that have started since the SCS was implanted, or are they related to your existing problems? If they're new, they could be related to the electrical activity - i.e., inappropriate stimulation of nerve or muscle, causing misfiring, causing the muscles to spasm - or it could be that the lead has moved and is actually compressing something. Either way you need to talk to your doctor or you tech (the person who is doing your programming) about
it because it is NOT normal
You may need an x-ray to check that the leads are still in the same position, that nothing is loose - and you probably need your tech to do a diagnostic on it to make sure that there's no current leakage anywhere in the system as this can also cause pain and stimulate things it shouldn't.
I have my fingers crossed that it will come good as things settle down after your surgery. Back and nerve pain are horrid things to deal with and I hope you can get it under control.
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