I deal with chronic, severe kidney pain (unilateral) that, over the past 3 years, has left most of my doctors stumped, including those at Hopkins. We denerved the kidney in 2009, and I had about 10 months of relief before the pain returned.
Currently, I am having celiac plexus nerve blocks done every 4 weeks (with novocaine/steroids). Doing the block with alcohol (which destroys the nerves) did not have the results expected and unfortunately that is the type of block that is long-term (6 months+).
In addition to the blocks, I also am on MS Contin daily, along with another pain medication for break-through pain and, of course, Zofran for all the nausea that the pain medications cause. All of this keeps the pain bearable (below or around a 5/10).
Needless to say, it is a difficult life to live many days. I am lucky to have a great team of doctors who refuse to give up on me (and it's not the ones at Hopkins surprisingly). The pain and general just not feeling good have caused me to lose a lot of weight...about 25 pounds (I'm 5'3 and weighed in at 93 pounds last week).
My doctors feel that I'm a good candidate for a neurostimulater--a pacemaker-like device that interrupts the pain signals to the brain. You typically do a trial run, with the leads inserted but the device external, and if it works, the device is then implanted in your abdomen.
So far, all the feedback I've received has been incredibly positive but I'm just wondering if anyone here has one and how it affected their life, helped with their pain, and whether it impacted their horse activity. I'm getting the feeling that riding, etc, would be frowned upon once one of these was implanted.
I'm 31 and my other surgical options are much more drastic--nephrectomy or autotransplantation.