After all of this the question is "What kind of kidney stone preventive treatment do I use now?
Sorry for the length of the follwoing but I left out alot of detail. It has been a nightmare for the past 20 years!
After hundreds of doctor visits to nationally recognized clinicians and 15 or more 24 hour urine collections and countless lab workups and hundreds of studies, x-ray, ultrasound scans, CT scans and MRI’s, and 21 ESWL procedures, 14 Cystoscopic procedures, 6 self stone passing’s and thousands of prescriptions for107 Kidney stones(Calcium oxalate) in twenty years. I still go through the same thing as described below. WHAT DO I DO NOW?
The latest started three months ago started with mild to serve pain in my right kidney. This was the typical pain in the flank area radiating to my groin. I knew what was happening as I had previous stones. I was hoping that I could pass this one. No luck! I ended up going to the emergency room explaining my condition. The ER doctors where very surprised with the number of previous stones and could not understand why someone had not figured out how to stop the formations. They were able to give me the appropriate pain medications that only helped control the pain but in no way eliminated the pain. A CT scan was ordered; the results were what we suspected a 3 mm stone in the ureter just below the pelvis of the kidney blocking the flow and two 3 mm stones in the lower pole of the kidney. Due to my history the urologists were not convinced I could pass the stones and suggested a surgical procedure to remove the stones immediately. I have only been able to pass six of the 107 stones in the past. I was scheduled for the procedure that afternoon April 24, 2009.
The surgeon passed a small fiber-optic instrument called an ureteroscope through the urethra and bladder and then into the ureter. The stone was located in the upper end of the ureter and removed with the use of a special cage-like tool. The surgeon then went back into the ureter to the kidney where he located the two additional stones and he shattered them with an instrument that produces a shock wave. After the procedures he placed a small tube called a stent in the right ureter for several days. The Urolgist told me this would promote healing of this portion of the urinary tract and allow for any stone fragments to pass freely to the bladder. After four painful days the stent was removed. I got immediate relief but before I got home the pain began was as intense as if I was again passing the stone. What occurred was the ureter was inflamed and when the stent was removed it collapsed. I was immediately returned to the hospital and they injected Toridol an anti inflammatory and muscle relaxant. Within one hour I had mild discomfort and I am on the way to full recovery. The procedure was not new to me as I had 14 cystoscopes in the past. The part of the procedure was the laser fragmentation of the stones in the kidney. In the past this was accomplished with the ESWL procedure.
Now let me explain my dilemma. I have very good doctors in my local town; in fact they have referred me to many nationally recognized specialists for treatment. All of them are confused with my condition. They have tested my blood, urine, kidneys, and system. The results of the test have come back within normal ranges, with only few that are either a little high or low. The nephrologist has prescribed HTC to lower the calcium level which affects the potassium so he prescribes Potassium which affects the Oxalate level; he then prescribes Alopuronol that reduces the uric acid. I do not understand all this but this what I was told. The results of all these drugs have failed in the first place my work up has been near normal with the exception of the stone formations. I went ahead and took the medications being a good patient and many times the results were an increase in the formation of stones. After a lengthy discussion with my primary urologist (a personal friend) I told him I was not taking any more of the drugs as the results were not good. He was not entirely in favor of my demands. I also refused to return to nephrologists number one. This doctor’s explanation of the results of the treatment was “I was not taking enough and I would have to live with the stones for life”. I eventually agreed with my primary urologist to see a new nephrologist. Nephrologists number two explained I had been on too many drugs and he lowered the doses and eliminated two of them. I was pleased with his diagnoses but it did not cure the problem. He also wanted to treat me for the pain rather that the formation of the stones. I again went along with the diagnoses and took the drugs understanding by treating the pain may help reduce the number of stones. The stones continued to form at an alarming rate 2 – 3 a month. It was also diagnosed with both ureter being abnormally narrow and had many strictures, so the possibility of passing stones was nearly impossible. After this treatment I again refused to take the drugs and the formation slowed. I did agree with the many diets and the extra liquid intake. This seems to slow the formation but did not eliminate it. I was drinking over two gallons of water a day. When I told the doctors this they told me to limit the liquid intake to 12 glasses a day as two gallons was too much. I did develop a digestive disorder. Two years ago I had my 21’st ESWL for the elimination of three stones. I again had a discussion with my primary doctor and he suggested I return to the new nephrologists in town, number three. I agreed. I again had the 24 hour urine collections completed. The results were just slightly out of the normal range on calcium, uric acid and oxalate. I went along with the diagnosis and began the drugs. A return to the urologist and a CT scan revealed I had three stones in my right kidney. I described the results above.
After the recent procedures I am now stone free but what do I do next. Any suggests?