I am a 48 yr old male. Over the past 7 years I've had around 8 episodes of kidney stones. I follow my dr's instructions on how I may prevent further stones. It works for a while but still around once a year, sometimes more often, I get a stone. Most times these stones pass after 2 or 3 days, but 3 yrs ago I had lithotripsy, then in July of last year I had laser surgery to get rid of another stone. My problem now is continued pain (sometimes severe) in my right kidney, where at least 5 of my stones have been. They've done xrays and other tests to see whats causing the pain but see no obvious cause. My urologist washed his hands of it, and my family dr writes me scripts for pain meds now and then to help me cope. During a convo with a dr on a different topic, we discussed my kidney pain, and she matter of factly said that it sounds like a case of scar tissue due to all the kidney stone issues I've had. She said it will likely pass after a year or two and that I need to be treated by a pain specialist until then, but warned that this pain may never go away completely. When I've brought this up with my urologist his eyes just glaze over and he once again just blows me off. What are my options on managing this pain? Kidney scar tissue pain tends to be something that few drs are prepared to manage. They seem to assume that anyone in pain is simply a drug fiend. Any advice on what I should do next or what my options are for dealing with this?
You really have 3 issues. The first is the cause of your pain and the second is to stop or at least significantly reduce your kidney stone risk. I'll save the third issue for last.
You may have had lots of x-rays and ct scans, but if you haven't had the right ones, they don't count. You need a functional x-ray to determine the degree and location of any scarring that is causing pain. Most of this scarring can be treated or at least bypassed. I do not agree that it will pass by itself. Scar tissue tends to contract over time and if you wait too long, it could constrict the urinary passage and you could lose your kidney! The test you need is an IVP and a renal nuclear scan. These two tests will identify the degree and location of any scarring causing kidney pain. Double J stents, Accusize, balloon dilation and various surgical substitution procedures are available. Even if your urologist doesn't do them himself, he should be able to refer you to the nearest center or expert in this type of surgery.
The issue of preventing stones is one that comes up over and over again because urologists are trained extensively in kidney stone treatment by surgery but not so much attention is paid to the prevention. Historically, the collection and evaluation of 24 hour urine collections to identify chemical risk factors and initiation of therapy to reduce kidney stone risk was done by either primary care or nephrology. While I am a little ashamed that more kidney stone prevention is not done by more urologists, I am proud that the majority of the recognized experts in stone prevention are now urologists; you just have to find the right one!
You should be given a 24 hour urine test which will identify which of the critical urinary chemistries needs to be improved or optimized to minimize your future stone risk. While this is a bit complicated, it can certainly be done. You can check with the Urology Department at the nearest Urology Residency Program University Center as they are most likely to have a specialist in this area. If possible, see if you can find someone who specializes in stones, has done a fellowship in endourology and/or is a member of the R.O.C.K. society. (If they don't know what that means, go to another urologist) (The R.O.C.K. Society is a group of specialists who are intimately involved in kidney stone prevention cuttine edge research.)
That leaves me with your third problem. You clearly need another urologist. He did not offer or discuss 24 hour urine testing or stone prevention with you; neither did he give you any useful advice about your kidney pain or a clear explanation of whether or not it actually is related to your kidneys or to something else. You need another opinion from someone who will be more interested in your health, who will prepare a plan for you and help you improve your situation.