[kvdb3c3b]

After suffering for months and months with pain and going from doctor to doctor, I was told I had multiple UTI's and then kidney infections. One day it really hit me and I ended up in the emergency room only to discover I had a 1inch long kidney stone in my left kidney. (By the way I am only 21 years old). I was really shocked to hear that since most doctors say that kidney stones are more likely to appear in someone much older than me. I have had the Ureteroscopic Stone Removal back in November, which was not pleasant at all. Since then I am still getting pain, ranging from mild to excrutiating. It always starts in my lower back and also in my lower abdomen, I get really nauseous and sometimes sick. I was told that after the stone is blasted into smaller fragments and the bigger pieces were taken out that the remaining smaller pieces will have to slowly pass on their own. I am wondering if anyone had this same procedure done and is experiencing the same symptoms as I am. How long is it supposed to take for the remaining pieces to come out because life has been absolutely miserable for me!

[haylee_beutler]

Your story is very similar to mine. Since i was about 12 years old, i have suffered multiple UTI's and constant kidney infections. I passed a stone when i was 15 (in horrible pain) and then just last october (at age 22) i found out that i had a stone the size of a chicken egg. Mine was probably a little larger than yours. I went to a urologist in my area who told me about the lithotripsy procedure (which is what your doctor is telling you about), but my urologist referred me to another urologist because he didn't feel that this procedure would be very affective on a stone of that size.

I went to the top urologist in a 400 mile radius of me. He highly recommended a PCNL surgery for a stone of that size versus muliple attempts of lithotripsy. (Multiple lithotripsy attempts are usually needed to break down a stone of that size any piece of stone left in the kidney will continue to build bigger at twice the rate). The PCNL surgery is much more invasive and far more expensive, but the success rate for a stone of that size is about 95%.

The procedure will require about a 2-4 day hopsital stay and about 1-1.5 weeks to recover. In the OR, they will put you out, place a tube and guidewires directly into your kidney inline with the stone, then insert a device that will inflate the tract made into your kidney. Once they have made a good tract, they will insert a nephroscope and a lithotripter to visualize, break up, and suction out the pieces of stone. The procedure takes about 1.5-4 hours on average. A catheter and nephrostomy tube (coming from your kidney out of your back) will be left in for the first few days until you are able to get up and walk around and your urine runs clear of blood.

I chose this procedure instead of the lithotripsy, and on November 6th i had it done. I do not regret it at all. The surgery was 100% successful. I DID have some postoperative complications that did not have anything to do with the surgery itself. Today i am stome free and i have not had a kidney infection or UTI since i had the surgery. (That is the first time i have been without an infection since i was 12!!!)

Please feel free to ask me any questions about anything. I can definitely see it from your point of view since i suffered basically the same thing as you are and i am of close age.

[kvdb3c3b]

Thank you, I am actually going to see the doctor this coming monday and I will ask him about this procedure you mentioned. I just assumed that it will all be gone since they went in through the urethra and blasted the stone and took it out. The doc told me there might be some small fragments left over that will have to pass eventually...but it has been too long and the pain is becoming more and more consistent again. The day all the pain hit me and I ended up going to Urgent Care, they did a CT Scan. Thats when they found my 'peanut' looking stone and also explained to me that all the little white spots I saw on the scan are areas where it wants to build up more calcium and form new stones, so I am just hoping and praying that I haven't developed new stones already. Do you know how fast it typically takes them to develop? It's good to hear that you're feeling better after all these years, I just can't imagine having a kidney stone the size of an egg! I could only imagine the pain you went through because after what I experienced, I feel like I am ready to give birth to a baby!

p.s. Do you know how much on average it costs to get this procedure done? When I had my first two surgeries I actually had no insurance whatsoever and now I am covered in medical bills from head to toe. Even though I am in a special program with the local hospital, I am pretty sure it will cover only a small fraction of the cost...

[haylee_beutler]

It sounds like the procedure the doctor is talking about is a ureteroscopic lithotripsy. This is where you are sedated and they go into your bladder and up your urinary tract into the kidney (or wherever the stone is). Sometimes they will use a "basket" tool that will grab the stone and remove it for smaller obstructing stones. Other times, they will use a lithotripter tool or a laser to break the stone down and remove it. This procedure is done frequently for stones that are stuck in the lower urinary tract. When you go the the doctor, make sure to ask a lot of questions about these procedures and make sure he describes them to you very well. It your stone is 1" large, i would definitely ask him about the "Percutaneous nephrolithotomy" procedure (PCNL procedure). When a stone is broken into many different pieces your body will normally be able to process the smaller particles just fine if they are left behind. However, it is said that if your body does not excrete them, they will continue to build in your kidney at twice the rate. In my case, my kidney stones developed over a long period of time. (about 7 years) However, i was only able to pass 1 of them and the others have continued to grow and develop in my kidney tissues making it nearly impossible to pass. There are some people who develop stones extremely quickly. (literally within weeks) Stones normally take significantly longer than that to develop. This also depends on what the stone make up is. As i mentioned before, the PCNL procedure is more invasive but a much higher success rate for a large stone of that size. I am lucky to have insurance so i do not know exactly what it cost me. I do know that the doctors fee was about 3800 and im sure the hospital was pretty expensive to. (3 days) Im assuming the surgery was at least 10,000. That would be a very good question to ask your doctor when you see him as well.

My biggest piece of advice is to not let the doctor talk you into any procedures or surgeries that you are not 100% comfortable about. Do good research on the internet about the procedures he recommends, research the doctor, and research the hospital. If you end up having any surgical procedure, ask the doctor or urologist if he is F.A.C.S. This means that he is a "fellow, American College or Surgeons." This means that the doctors qualifications and medical competence have passed rigorous evaluations and have been found to be consistent with the current high standards.

Good luck and let me know if you have any questions. I would be happy to answer anything, considering that i know exactly how you feel being this young with a stone of a large size.

[lioness]

Nice to read that someone else is well read about their treatments. I had the PCNL sx 3 yrs ago and 5 treatments later. If you havent read my previous posts my stones were the "infectious stones" about 2-4 cm bilaterally. I am "stone free" in the collecting system as of 10/08 but stones are forming again. I can feel them punching my kidney. I have been on low dose antibiotics for 3 mos. I have had UTI's since I was in high school. I was diagnosed 3 years ago kept having infections. Maddening. Having trouble staying hydrated. t\aking thiazides and potassium. Have hypercalcuiria.

I have a little oaxalate in the mix now with predominantly still hydroxylapatite, magnesium, ammonium, phosphate, which I don't understand since I don't have the urease splitting bacteria "Proteus" any more. Any thoughts, there, Haylee? I have had a PIIC line administering my own IV antiobiotics. Resistent strain of E Coli. Over abuse of antiobiotics. I have constant flank pain unheeded by my uros, not the kind where I need to go to ER. Enough to be uncomfortable and disruptive.

It's great to read that you are "stone free". What kind of stones did you have? Were yours infectious related, too? since you also had recurring UTI's?

I have never felt 100% since the first surgery b/c I didnt know about the combination of PCNL and ESWL. I thought once the uro took them out in the flank that was it...nope 5 treatments later and possibly #7. I just had a CT urogram and I know they will want to treat them.

[haylee_beutler]

[quote="lioness"]Nice to read that someone else is well read about their treatments. I had the PCNL sx 3 yrs ago and 5 treatments later. If you havent read my previous posts my stones were the "infectious stones" about 2-4 cm bilaterally. I am "stone free" in the collecting system as of 10/08 but stones are forming again. I can feel them punching my kidney. I have been on low dose antibiotics for 3 mos. I have had UTI's since I was in high school. I was diagnosed 3 years ago kept having infections. Maddening. Having trouble staying hydrated. t\aking thiazides and potassium. Have hypercalcuiria.

I have a little oaxalate in the mix now with predominantly still hydroxylapatite, magnesium, ammonium, phosphate, which I don't understand since I don't have the urease splitting bacteria "Proteus" any more. Any thoughts, there, Haylee? I have had a PIIC line administering my own IV antiobiotics. Resistent strain of E Coli. Over abuse of antiobiotics. I have constant flank pain unheeded by my uros, not the kind where I need to go to ER. Enough to be uncomfortable and disruptive.

It's great to read that you are "stone free". What kind of stones did you have? Were yours infectious related, too? since you also had recurring UTI's?

I have never felt 100% since the first surgery b/c I didnt know about the combination of PCNL and ESWL. I thought once the uro took them out in the flank that was it...nope 5 treatments later and possibly #7. I just had a CT urogram and I know they will want to treat them.[/quote]

Yes, my stones were infenction related, which is normally rare. Most kidney stones are calcium oxalate stones. These stones are made up of calcium and oxalate. When there is too much of either, calcium or oxalate, intake they combine in the urine to form a calcium oxalate compound and eventually a kindey stone. My stone was a struvite stone comprised of 50% magnesium and various other compounds. Struvite stones are much less common and are always associated with urinary tract infections.

I am lucky because i can't actually feel my kidney stones until they decide to move around a bit. My stones formed in the kidney tissues and never caused much problem. I have no stones currently that are obstructing anything or causing any significant problems. However, i do have 2 stones still present. Although, these stones are small only about 2-4 mm, in the kindey tissues. I have to get KUB x-rays every 3-6 months to make sure these stones are not "building" or moving. I have been infection-free since i had my large stone removed. As long as i remain infection free, the urologist does not seem to worry about the other stones "building" much bigger. These stones could possibly just stay where they are at and never get bigger for the rest of my life. (crossing my fingers)

[kvdb3c3b]

I just went to the doctor today because I've been having similar pain again. They kept looking at me like I was stupid and just wanted to get some pain pills like I was some druggie or something. i kept on having to describe the pain over and over to two people. I am very familiar with the pain and can tell the difference between kidney stone pain and anything else like gas, cramps,etc...They said my urine was fine, no blood or anything and now I have to go back on wednesday to get the CT Urogram done. I have never had it done before and not familiar with it at all. I've actually had the PCNL procedure done back in mid December which was hell because the first time they tried to do it they couldn't go in with a tube through the urethra because it didn't fit so they ended up putting a stint in me and I had to wait for about 5 days and then go back for the second time. The second surgery went fine, they got to the stone but still had to leave the stint in me which is so unpleasant, especially when I went back for the third time to have it taken out. My stint was over a foot long, I'm not sure if that's a regular length or not. Can someone tell me exactly what the CT Urogram, and how its performed? They gave me instructions to follow as far as not eating anything the night before..just curious why?

[lioness]

I have had two CT urograms done. They put an IV in you then put dye in it so your urinary tract can show up and is eluminated, then they take pictures through the spiral CT. This is a good way to tell what is going on...I also had the PCNL sx done bilaterally in 6/06 not fun, dont want it again. Took a lot out of me. Hadnt had surgery since I was a teenager...I had the double J stents out the back...there are various sizes of stents...foley catheter for a couple of days...didnt like that either...stones were ALL infectious. Still are...and not residual stones, either...I have had 6 treatments total, 2 ESWLs, & 3 URS's...#7 coming up...stones keep causing infection. I have been on low dose antibiotics for 4 mos now. I have an infectious disease doctor monitoring the infection. I have also administered my own IV antiobiotics at home. Still have the IV pole at home. My stones will never pass FINALLY confirmed by my former treating uro...

My flank pain has also unheeded by my uros. They hadnt cared in 3 yrs about the pain...Although I have just recently found a uro locally whom I like and he hasnt ruled out my flank pain and agrees in taking the tests that I want taken to actually, shall I say, monitor my stones. . . part of the problem I believe is that I am a female patient in a man's premoninant medical field. There has got to be one uro who is sympathetic with stone patients. All they care about is doing surgery...I have asked my new uro to take over treatment something I should have done two treatments ago...I chose poorly...I know by body well and know what flank pain is...and what stones feel like when they punch your soft kidney tissue...regardless of where there are blocking or not...

[haylee_beutler]

When i first originally read this post, i assumed you had not had treatment yet for the 1" stone. That is why i was recommending the PCNL surgery. You probably have residual stone in your urinary tract from the treatment you received on that stone. CT urograms are good test to perform. It will tell the doctor if you do have residual stone and exactly where. I have had 1 CT urogram, 2 pyelograms with fleuroscopy, PCNL surgery to my right kidney, 2 cystoscopies, and 1 ureterocystoscopy. All of this was over "1" kidney stone. lol. Your pain "is" probably cause by residual stone stuck in the urinary tract somewhere, but they will be able to identify it with the urogram. If they find a stone in the ureter somewhere, they will probably the a ureteroscopy, going up the ureters with a scope and using a "basket" to retrieve the blockage. In many cases, you will be under anesthesia for this.

Dont worry too much about the urogram. It is a very basic and fast test. "Not eating anything the day of the test" is basic protocol for most CT tests. Im not sure exactly why, but i think it is partly because they dont want any gas or stool causing any inconsistencies in their pictures. (In an x-ray, gas or stool can sometimes make the picture unclear and fuzzy)

[lioness]

It is also a urological emergency if a stone is blocking the flow of urine. . .not a doctor but could cause hydronephrosis, is an "acumulation of urine in kidney due to blockage in the ureter". The kidney is dilated & extended because of the blockage of the urine.