Please consider buying the Kidney Stone a Handbook which is about $17.00 now if you go to http://www.kidneystonehandbook.net. This is written by a doctor, Dr. Stephen Leslie and has a co- author who was a kidney stone sufferer... Gail Saviz is dead. If you try to email her, Dr. Leslie will respond.
The book explains that treatment to stop kidney stones from forming is available and what it involves. It is a lab test (urine)and possibly some blood work(metabolic testing). Medications and some special diets will help most people but the correct ones need to be determined. Before that can be effective it must be determined what is causing the kidney stones to form and what kinds of stones are they? Kidney stones are layers of minerals.. kind of like a mini rock formation... and composition of them can change over time.
Dr. Leslie also lists the top kidney stone urologists in the US and their contact information. Most are at public univ a few are in private practice. A few may be at private univ too. Dr. Leslie used to help people on a Yahoo kidney stone web site. But that web site is spammed and the moderators won't do anything about it. Also Dr. Leslie moved to another state and became a professor at a private university and probably does not have any kind of a private practice. However, you can Google him and find info out about him.
I don't think he ever can explain why many urologists don't do the lab work and testing to help kidney stone sufferers. He really can't say negative things about most of them, as they are all in the same professional groups. Most urologists do not know or really want to know how to treat kidney stones and many will not tell you this. Many feel obligated to do what they can because of the USA wide shortage of urologists and some probably need the money they can make from kidney stone procedures.
Also in some places urologists will order the metabolic testing but they can't really understand the interpretation of the results.. in that case, a nephrologist may be the better doctor to see. If a urologist tells you nothing can be done to stop stone formation, then that is pretty much true... he or she does not understand kidney stone treatment and does not want to... he/she has another subspecialty. Good urologists will refer you to another urologist who can help you... but in some places, there is no one any better than the doctor you already saw. In order to find a doctor with the training you need.. you need to find a doctor in another state close to your location.
Some of the kidney stone experts do travel to other states and help train other urologists, from time to time also.
That is the situation I am in. My doctor and his partner of over 20 years retired... then they got bored, and decided to practice at the VA hospital. Also some surgeons are good at surgery and not much else... they are not so hot at any other kind of interaction with patients. Newer doctors are required to have a better bedside manner and be trained to be more personable in residency programs. Yes, some surgeons do experience a high when they perform successful surgery.
I learned all of this and more from Aug 2007 to Dec 2008. Dr. Leslie, The Yahoo kidney stone board, an administrative assistant at the univ in the urology dept, the nurse practioner at the same place and the chief of the urology dept at that time all helped me. Plus I did my own research and located other doctors who were also kidney stone experts. I looked at journal articles from the list of doctors in the Kidney Stone Handbook and then saw who their colleagues were. I looked up more journal articles and Googled doctors names. I looked at Univ web sites and urology departments. I looked at US News and World Reports list of best hospitals in urology and nephrology for that year. I had a lot of time so I did hours of research.
There is help out there. But it is sometimes very difficult to find it. It is also hard to do this if you are in pain and there is an immediate need for treatment... in that case, you will need referrals or figure out how to get help on your own... and realize it may very well be in another state. However, places like the Mayo and Cleveland Clinics have programs set up to help nonlocal sick people to get treatment... and help the families of the sick person to come there and provide emotional support.