Hi and welcome.
I would agree with Susie, that you may have had some unrealistic expectations going into your trial. Did you have a psych evaluation prior to the trial? I didn't, I'm not entirely sure why actually, as it seems to be a pretty standard thing - in part to make sure that expectations ARE realistic.
I'd definitely have a good talk to your doctor as not having to take ANY medication is usually not the guideline for a successful trial. Usually it's given as around 50-70% reduction in pain relief - maybe your doctor considers this sufficient to be medication free?
One thing to consider - is that because your trial leads have been removed there is a chance that if you decide to go ahead with a permanent implant, you will not experience the same stimulation or pain relief as during the trial. When I had my trial, the doctor who did mine suggested doing the trial with permanent percutaneous leads - i.e., surgically implanting the leads even for the trial. Although this is more invasive, it gives a more realistic picture of what the permanent stim will feel like - and if you go ahead with the permanent one as I did, there is no changing over of leads and no potential for that loss of pain relief. Even a change in lead position of 1-2mm can create a completely different pattern and can make the difference between good relief and no relief. My personal opinion is that this is one reason why some people have good relief with trials and then have no relief once they have the permanent implant done. Your body will also adapt to the sensations in time - and I suspect that for almost everyone there is some degree of placebo effect too - so it may well be that the pain relief you get will be less after a few months.
You also need to be very, very honest with yourself about just how much pain relief you were getting. You said you were able to decrease your meds, which is great. Within the restrictions imposed by the trial - were you able to increase your activity levels? Also - what do you do with yourself? Although the most critical period is the first three months or so after surgery when your unit and leads are healing in place, the SCS does not like repetitive bending or twisting movements as this can damage the leads and cause them to migrate - making more surgery necessary.
Okay - now my experiences.
I had my first SCS implanted in 2006 for Complex Regional Pain Syndrome (CRPS - a very painful neuro disease) in my right leg). The 'success' of the trial was hard to judge in the typical way for me... obviously pain's a pretty subjective thing anyway, but CRPS pain has lots of different elements to it. On one hand - my trial should have been a fail, because it did almost nothing at all for the deep, crushing/burning bone pain that I get. Where it was a winner for me was that CRPS causes something called allodynia - extreme hypersensitivity to touch. I couldn't wear a sock or shoe, had my pants rolled to my upper thigh. The SCS trial gave me near-total relief from that and within a few weeks of my permanent implant I was wearing jeans, boots and walking with crutches.
In 2008 the disease spread to my left leg. I had the SCS battery replaced because my original unit could only accommodate one lead, and had a second lead implanted. That's where all my fun started - I was vomiting badly (I've got GI issues as well) and I shifted the new lead within a week or so of surgery. It ended up kinked and my doctor couldn't work it back into place, so he had to remove it entirely and replace it a few months later. Sometime down the track - can't remember now how long - I started getting severe back pain whenever I turned the SCS on. My tech worked out that the lead had moved again, had worked its way out of the epidural space and was stimulating all the surrounding tissues instead. So May last year I had that lead removed and replaced with a small paddle lead - placed in the same way as the percutaneous leads (no bone removal). I had big problems with the surgery - it wasn't done by my PM, but another doctor, and it was a nightmare. I felt everything because he didn't use enough local, and the lead was almost too big for my spinal canal so I had trouble with pain, numbness and weakness in my left leg for months after surgery. Because my back had been opened so many times, it also took months to heal.
Occasionally people will be pain free with a stimulator, but this is far from the norm. What the stim is intended to do is alter sensations - it does cause some masking of pain signals as well, but it's almost never going to provide total pain relief. I'm still using a LOT of meds - more now than ever in fact. Though this is partly because I can't use my stim properly (only for 5-10 minutes at the time) after breaking my back last year - and the damaged area is causing pain that is exacerbated by the SCS. I'm on my upper range of meds at the moment because of a minor car accident a couple of weeks ago, but my normal meds are from 60-90mg Oxycontin, 7.5-15 Meloxicam, 225mg Topiramate (for neuropathic pain), 20-40mg Oxycodone IR (+ paracetamol if I use it), 4mg Lorazepam when I need it (nausea, muscle relaxant) and I also have a pump with Baclofen & Bupivacaine.
I hope that helps - please ask any questions you'd like - and don't be scared off by my experiences. Despite those, I still wouldn't be without it. I've also got severe radiating leg pain from lower back issues, and the SCS is the ONLY thing that helps with that pain. It's only a recent thing - the last year or so - so not relevant to my pain - but when I can have the stim on I get maybe 90% relief from the back-related leg pain.
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