Kidney Stones Support Group

First thing you need to do is stop making the stones. I also have the medulary sponge kidney as well as chronic kidney stone disease and hyperparathyroidism. Have you had your parathyroids (not to be confused with thyroids) checked yet? Did your doc do a 24 or 48 hour urine test yet. Once you are diagnosed with having several stones they should really check your different levels in a 24 or 48 hour urine test. Then they can put you on the proper medications to regulate your levels. Most people think all calcium stones are caused from high oxalate diet - not so! Please don't allow them to wait to long as my docs did. I am now at a point where I pass stones regularly, after having percutaneous nephrolithotomy 4 times at John's Hopkins, the director of stone disease told me he removed "hundreds of stones" and that was just what he was able to get. Unfortunatly the local urologist didn't do this when first diagnosed (my husband found my hopkin's doc, 4 hours away) as now my uruter and kidneys are over-sensatized" from passing all the stones for 6 years before that and now it hurts most days just to pee(even w/out passing stones). I was having 3 - 6 lithrotripsies a year and in & out of the hospital and ER. I am still passing stones and in severe pain daily. This is NO way to live. Please see as many docs as you have to - don't allow them to just brush you off. I can't imagine how bad it would have gotten if my husband did not step in when he did. The good news is my new doc was able regulated my levels with surgery and medication so I am no longer making stones. The bad news - I still have to pass the ones I have. Good luck!

hi i have meed spong kidd dease and renal tub asadoses went to er sun and had a ct scan and thet foun a 9mm stone and told me to go home and calla uroligst for a appt tryed to give me #5 percocets and send me home told me they woulden do lithotripsy on friday when the machean is at our hospital beacus it was the forth so i came home and called my reg dr and she told me to come to her off and she would amit me and she did they did lazer surgery on me and it went well had to stay for a few extra days due to infection in kidd but i'm great now so thank you all i dont feel so alone

Dinkerbelle is correct ... you must have a 24 hour urine test. she is also correct urologists can specialize in stone diease or stone management.... try the medical school nearest to where you are.

You may alos find a nephrologist to manage stone diease...you must find one interested in that. Many treat people with kidney failure... people on dialysis. Nephrologists treat inoperable kidney diease. Urologists are trained as surgeons. A doctor you can communicate with you, who is interested in you, is what you need. Plus the stone diease subspecialty

The problem is: there is a USA wide shortage of urologists, there are not enough residency programs to turn out new docs to help with this, many urologists do not know how to interpert the 24 urine test and do not care to learn how to do it.

I have been having utererscopies for almost a year at the university. I had to have the local expert for difficult kidney stones.... so I have learned about residency programs, university politics and on and on. There is no end to these in sight: they can not get the stones out of right kidney. This is delicate surgery.

I am considering going out of state for treatment.... because the univ has funding issues and too many patients... making treatment very slow. Plus, and I never thought I would say this, I am not sick enough. I am not passing stones and do not have an acute infection... my treatment is not critical. Also my doctor retired June 30 and his replacement who maybe is an excellant surgeon too... is young and has been board certified for 5 yeare.

I get some support on my yahoo kidney stone board. I am just so frustrated and obcessed.
Now I am trying to find out what my teatment plan is and I am going to get a 2nd opinion from a nephrologist....if they can't tell me than I want a referral to a urologist they know....no one who has ever heard of me. Many of the doctors here, have heard about me...or been at a conference where my kidneys were dicused.

mctripat