Disclaimer: I am not a medical know-it-all – not involved in medical fields, just sharing our experiences.

Arthropathy is an interesting word. According to Spine-health, one of our go-to resources for info on our spinal concerns the last few years, arthropathy essentially encompasses joint diseases. Surprisingly, this could take many forms although it feels like the medical profession basically equates it to arthritis. Spondyloarthropathy appears to be a category that includes various types of joint diseases that primarily affect the spine. Ankylosis refers to the abnormal stiffening of a joint through fusion. In the case of ankylosing spondylitis, this is basically occurring in the spine but can also occur in other joints.

For my husband, ankylosing spondylitis involved a multitude of bone spurs. Excessive overgrowth of the bones meant that there could be nerve problems, positioning problems in the spine (including serious adult scoliosis), and stenosis. In his case, he was at the point of critical stenosis at two levels in his lumbar spine at the time the MRI was done in 2015. He was already in queue for a shoulder surgery (tissue cleanup for his right rotator cuff) and for a total knee replacement of the left knee. These occurred within two weeks of each other, allowing just a 3 1/2 week period for healing before the spinal surgery.

If the stenosis were not so severe, this might have waited a while, but the surgeon and my husband felt that it was better to move forward. My husband tended to be all about getting this stuff done and out of the way so that he could heal. Also, at this point in time, there was not a diagnosis of ankylosing spondylitis. Had that been known, I think there would have still been an aggressive response because of the state of his spinal cord. Nevertheless, we had no idea that this necessary surgery was going to translate into two additional major thoracolumbar undertakings. One year later, the fusion failed at the top, T12. The following year, a titanium rod in his back snapped. More extensive surgeries, more long recoveries. Each one left him a little weaker and caused greater struggles in recovering.

Every individual has to face these decisions personally. For us, there was definitely the hope of fixing the problem enough to be able to return to normalcy. Normal never really returned. Medical activities were our new normal. We had to look back to his original back surgery in 2000 when he was fused from L3 to S1 to remember that work was actually considered advantageous in keeping him in shape, and that same work ethic helped Scott through some of the tougher moments after these more extensive surgeries. I can’t direct you to answers for dealing with ankylosing or other joint diseases, but I know that there are many communities on Facebook and other health forums for gleaning insights about managing symptoms and seeking answers. These can be invaluable if you are looking at a seemingly neverending slew of medical treatments and procedures.