My husband has had low back and facet joint issues for years that started with a herniation at L4-5 in 1998 which was non-surgically managed with LESI's and radiofrequency ablations for many years. He took the occasional pain pill but managed pretty well. In Jan 2008 he reherniated L4/5 and also L5/S1. He tried oral pain meds/LESI's/physical therapy for 4 months but the amount of pain meds he was needing was crazy so we opted for a discectomy. His rehab went well until about the 6 week mark when his pain began to get progressively worse with the predominant pain involving his left leg all the way down to under his foot. He has had CT/MRI's and myelograms w/ a consistent dx of epidural fibrosis. He was tx w/ more LESI's, epidural adhesiolysis, and enough pain meds that his liver enzymes started to rise.
At that point we dealing with a pain management duo of anesthesiologist and neurosurgeon and opted for a SCS (Medtronic was what they used). The trial with percutaneous epidural leads was so encouraging and with what I know now I would encourage any one taking this route to go with burying the leads during the trial so that you have the option to keep the same leads if you have a good result. However, we were encouraged to go with paddle leads because of his age (49 at that time) and his desire to return as much as poss to his previously active lifestyle. They removed the percutaneous leads and attempted to place paddle leads at T7-9 which was not anywhere near as successful apparently due to a curvature of his spine at that level, something I have since been told should have been able to have been overcome. They tried to compensate for the less than adequate stimulation by placing an additional percutaneous lead at a later date which is lower than optimal because of the presence of the paddle lead. The result was some relief of his leg pain but no relief of the facet pain that they had hoped to get. They then placed a peripheral lead across to the left facet area, again with some relief. By this point the generator had been exposed 3 times and he now had 3 different back incisions.
Unfortunately the relief has never been enough to allow him to resume anything close to a 'normal' lifestyle as he has trouble walking any distance or sitting/standing for any period of time. Not wanting to tax his liver again with oral meds we opted for a fentanyl patch. This was probably the most helpful thing we have done but only to a point. He is able to function around the house but any exertion beyond this aggravates the pain. He has tried biofeedback, hypnosis, acupuncture, topical concoctions of muscle relaxants, ketamine etc etc...in other words we have been open to anything. At this point, 4 years later, he is feeling a sense of finality, as if this is as good as it is going to get. He has been on wellbutrin for a few months, both for mood and hopefully to also help the pain and recently his family practice doc decided to change him to effexor XR. Research on that is a scary thing and I would appreciate any feedback on anyone's experience with this drug as I have read some nightmare stories regarding side-effects and trouble stopping taking this drug, none of which was mentioned to him by his doctor.
My husband is at the point now that he is willing to entertain a suggestion given to us a year or so ago... that he completely revise/replace the spinal cord stimulator and change to a Boston Scientific system. However, this time I want to go with someone highly specialized in the field of spinal cord stimulator placement revisions, and I don't care where we have to travel to to get this done. Does anyone have any suggestions or experience with someone they could recommend.