Phantom Kidney Stone Pain in Chronic Sufferers

There was a time, many years ago, when I could present to my urologist with kidney stone pain, pinpoint exactly where it would show up on the CT Scan, and I was right, every time. I could tell the difference between a stone in my ureter and one in a renal pelvis. I knew what a post-op blood clot felt like as it occluded a ureter. I knew inflamed kidney pain from stone pain. My doctors never second guessed my pain, they would simply seek out the culprit.

Then one day, long after my cystinuria symptoms were under control thanks to dietary changes, I presented to the ER with intense stone pain only to find one or two punctuate stones (itty bitty to the point where they should neither cause pain nor obstruction, or a small stone within the kidney where pain receptors do not reside.

This happened once. Then twice. I had lost my pain-telling mojo and began to fear coming across as a drug seeker. I had indeed felt pain, but I was free of stones, gallstones (different area, I know) and tumors. My scans were clean. What had I been feeling?

I self-labeled this phenomenon phantom  kidney stone pain, and a quick search let me know I wasn't alone, however I couldn't find people who were experiencing phantom pains years after passing their last stone. Is it possible that the pain of having passed literally hundreds of tiny-to-8mm stones on my own, experiencing horrific stent pain and undergoing countless ureteroscopies has led to some kind of temporary or permanent pain impression on my brain? Is it a sort of PTSD (for lack of a better term) for those who have suffered insurmountable stone pain over a long period?

Curious.

The worst part is how our stones are not visible on plain x-rays, so when we experience a new chronic pain, we are often doused with 1000x the radiation as in one chest x-ray in a sitting. It would be great if research, including fMRIs could be performed on patients with phantom kidney stone pain which affects their livelihood.