Undescended kidney stones: Surgical removal, "wait and see", or...?
September 29, 2014 9:28 AM Subscribe
I’m a male in my late 40s. I’ve had two acute kidney stone attacks in the last three years. I recently requested copies of earlier CT scans, and I was shocked to learn that I have multiple kidney stones (of various sizes) remaining in both kidneys. My former urologist had somehow neglected to tell me about those remaining stones.
What are my options for these undescended stones, and what should I discuss with my new urologist at my next appointment? I am currently asymptomatic.
Background: For about five years or more, I experienced high calcium levels caused by undiagnosed hyperparathyroidism. My doctors at the time were not concerned about my elevated calcium (it was only slightly out of range), and the hyperparathyroidism was finally diagnosed only after I insisted on follow-up bloodwork to test for parathyroid hormone. I ultimately had surgery to remove a parathyroid adenoma, but the years of high calcium apparently took their toll in the form of multiple kidney stones.
I’ve experienced two acute kidney-stone attacks, with the first episode occurring about three years ago. The first stone was large and would not pass over the course of three weeks. It was finally removed using ureteroscopy & laser lithotripsy. I must say that this was one of the of most unpleasant experiences of my life. The stent caused spasms in my bladder, I had extensive bleeding, I experienced side-effects from the pain medicine, and my urologist was less-than-competent (for example, he didn’t even analyze the composition of the stone he removed). I dread the prospect of undergoing this procedure again. The second kidney stone attack occurred recently and was less dramatic – the stone was much smaller and passed spontaneously after a few days (I somehow missed it despite straining my urine).
My current concern is about the remaining stones. The CT scans show that both kidneys contain multiple stones in various sizes up to approximately 7mm. I recently had a short appointment with a new urologist. This consultation was not very informative – the doctor was vague (bordering on evasive) when I asked about the best strategy to pursue. He did indicate that going into the kidneys & removing the stones is not an easy procedure and is probably even more unpleasant (!) than the ureteroscopy I had undergone three years ago. However, he didn’t really offer any alternatives, aside from saying that he didn't think extracorporeal shock wave lithotripsy would work, due to the fact that my stones don't show up well on conventional x-ray images (this reasoning confused me). I’m not very quick on my feet, and I didn’t ask many follow-up questions. The whole appointment was rather frustrating.
I have another appointment coming up in January. I want to do my homework between now and then, so that I will be better prepared to discuss the specifics of my condition and what options I should consider. I’ve done some research on-line, but most of the information is presented in a fairly abstract, matter-of-fact style that doesn’t lend itself to easy translation into an optimal course of action that would be based on the particulars of my situation.
Also, I’ve read conflicting information about whether anything can dissolve existing stones. I tend to think not, and I’m also not clear whether it really makes sense to drink a lot of extra fluids now that I don’t have elevated calcium anymore.
There's a medical school library in town, and I'm pretty good at deciphering medical jargon, so don't be afraid to point me toward particular references in the literature.
What are my options for these undescended stones, and what should I discuss with my new urologist at my next appointment? I am currently asymptomatic.
Background: For about five years or more, I experienced high calcium levels caused by undiagnosed hyperparathyroidism. My doctors at the time were not concerned about my elevated calcium (it was only slightly out of range), and the hyperparathyroidism was finally diagnosed only after I insisted on follow-up bloodwork to test for parathyroid hormone. I ultimately had surgery to remove a parathyroid adenoma, but the years of high calcium apparently took their toll in the form of multiple kidney stones.
I’ve experienced two acute kidney-stone attacks, with the first episode occurring about three years ago. The first stone was large and would not pass over the course of three weeks. It was finally removed using ureteroscopy & laser lithotripsy. I must say that this was one of the of most unpleasant experiences of my life. The stent caused spasms in my bladder, I had extensive bleeding, I experienced side-effects from the pain medicine, and my urologist was less-than-competent (for example, he didn’t even analyze the composition of the stone he removed). I dread the prospect of undergoing this procedure again. The second kidney stone attack occurred recently and was less dramatic – the stone was much smaller and passed spontaneously after a few days (I somehow missed it despite straining my urine).
My current concern is about the remaining stones. The CT scans show that both kidneys contain multiple stones in various sizes up to approximately 7mm. I recently had a short appointment with a new urologist. This consultation was not very informative – the doctor was vague (bordering on evasive) when I asked about the best strategy to pursue. He did indicate that going into the kidneys & removing the stones is not an easy procedure and is probably even more unpleasant (!) than the ureteroscopy I had undergone three years ago. However, he didn’t really offer any alternatives, aside from saying that he didn't think extracorporeal shock wave lithotripsy would work, due to the fact that my stones don't show up well on conventional x-ray images (this reasoning confused me). I’m not very quick on my feet, and I didn’t ask many follow-up questions. The whole appointment was rather frustrating.
I have another appointment coming up in January. I want to do my homework between now and then, so that I will be better prepared to discuss the specifics of my condition and what options I should consider. I’ve done some research on-line, but most of the information is presented in a fairly abstract, matter-of-fact style that doesn’t lend itself to easy translation into an optimal course of action that would be based on the particulars of my situation.
Also, I’ve read conflicting information about whether anything can dissolve existing stones. I tend to think not, and I’m also not clear whether it really makes sense to drink a lot of extra fluids now that I don’t have elevated calcium anymore.
There's a medical school library in town, and I'm pretty good at deciphering medical jargon, so don't be afraid to point me toward particular references in the literature.
I'm sorry you've had two unproductive doctor visits. One problem is that as mochapickle says, there isn't really a good treatment for dealing with the kidney stones that are in your kidney and the stones may just stay there, forever. I know this is disconcerting and is difficult to reconcile with get these very painful things out of me! I would ask at next appointment if the doctor thinks that you are prone to kidney stones and if you would benefit from a prescription of potassium citrate, or maybe even just drinking lemon water. I assume they have already told you to increase your fluid consumption, as that is pretty standard, but if they haven't I would ask if increasing how much you drink each day (generally water, but does not have to be) would be helpful, and if not, why not. I am disappointed that your stone wasn't analyzed, and I would mention this, even though it's a new doctor. I would emphasize that you wish any stones to be analyzed if you have the misfortune of passing another stone.
posted by dawg-proud at 10:15 AM on September 29, 2014
posted by dawg-proud at 10:15 AM on September 29, 2014
Best answer: Yeah, you live with them and hope they never go anywhere. In my case it's been something like 14 years since my last attack, at which time I also had stones sitting in my kidneys. Not sure if they're still there or they've dissolved or passed without me knowing. No news is good news, I guess.
In terms of your next appointment: put together a written list of questions, and if at all possible take a friend with you so you can have a discussion with the doc while friend takes notes.
posted by BlahLaLa at 10:52 AM on September 29, 2014
In terms of your next appointment: put together a written list of questions, and if at all possible take a friend with you so you can have a discussion with the doc while friend takes notes.
posted by BlahLaLa at 10:52 AM on September 29, 2014
Best answer: There are some clinical trials being done regarding the efficacy of Lapis judaicus in dissolving calcium based kidney stones. An upcoming journal article in Journal of Ethnopharmacology titled "Randomized and double-blinded clinical trial of the safety and calcium kidney stone dissolving efficacy of Lapis judaicus" indicated success in dissolving stones over a 10 week clinical trial using Lapis judaicus capsules.
It looks like this is still an emerging area of research, so I'm not sure how much good that does you right now, but maybe down the road it might be an option.
posted by bluloo at 11:11 AM on September 29, 2014
It looks like this is still an emerging area of research, so I'm not sure how much good that does you right now, but maybe down the road it might be an option.
posted by bluloo at 11:11 AM on September 29, 2014
I know someone who had kidney stones removed directly from the kidney after ultrasound treatment didn't work (stones didn't fully break apart and those that did break about gave him a horrible bacterial infection). He was completely knocked out when the stones were directly removed from his kidneys, so there was no pain. He was on heavy duty IV antibiotics afterwards though and was rather uncomfortable. He was in the hospital for a week afterwards.
A loved one of mine almost died after having kidney stones removed through the urethra (blood clots formed in his kidneys afterwards).
I am not a doctor, but if the kidney stones aren't damaging your kidneys, removing them might not be a great idea. The procedures to remove kidney stones sound so simple, but no one I have known has had the procedure go completely smoothly.
posted by parakeetdog at 11:59 AM on September 29, 2014
A loved one of mine almost died after having kidney stones removed through the urethra (blood clots formed in his kidneys afterwards).
I am not a doctor, but if the kidney stones aren't damaging your kidneys, removing them might not be a great idea. The procedures to remove kidney stones sound so simple, but no one I have known has had the procedure go completely smoothly.
posted by parakeetdog at 11:59 AM on September 29, 2014
Best answer: IANYD and not a urologist, but I can help provide you with some information about stones in general:
- Renal stones (stones in the kidneys, that sit there and don't cause symptoms until they move) are a common 'incidental finding' on CT scans , which unfortunately patients don't always find out about, because the final reading may not be available during an emergency department visit, or doctors may just assume that patients know that since they have recurrent kidney stones, the stones may be there.
- I know that in general, invasive procedures, which carry risks of complications, are only going to be done if the benefits of the procedure outweigh the risks, and that most people with recurrent kidney stones just end up having a kidney stone pass every once in a while (some keep scripts for pain meds/antinausea meds on hand at home in case of recurrence, if they have a good relationship with their doctor) - rather than having invasive procedures to remove stones from the kidneys.
- "Radiolucent stones", stones not seen on x-rays, are made of different stuff - the radiolucent stones are uric acid, cystine, indinavir (from an HIV medication), and pure matrix stones (rare), rather than the common calcium oxalate stones
From eMedicine's Nephrolithiasis page:
"Urinary calculi composed predominantly of calcium cannot be dissolved with current medical therapy; however, medical therapy is important in the long-term chemoprophylaxis of further calculus growth or formation.
Uric acid and cystine calculi can be dissolved with medical therapy. Patients with uric acid stones who do not require urgent surgical intervention for reasons of pain, obstruction, or infection can often have their stones dissolved with alkalization of the urine. Sodium bicarbonate can be used as the alkalizing agent, but potassium citrate is usually preferred because of the availability of slow-release tablets and the avoidance of a high sodium load.
The dosage of the alkalizing agent should be adjusted to maintain the urinary pH between 6.5 and 7.0. Urinary pH of more than 7.5 should be avoided because of the potential deposition of calcium phosphate around the uric acid calculus, which would make it undissolvable. Both uric acid and cystine calculi form in acidic environments.
Even very large uric acid calculi can be dissolved in patients who comply with therapy. Roughly 1 cm per month dissolution can be achieved. Practical ability to alkalinize the urine significantly limits the ability to dissolve cystine calculi."
Stone Prevention: it's not just for people with high calcium levels!
"Prophylactic therapy might include limitation of dietary components, addition of stone-formation inhibitors or intestinal calcium binders, and, most importantly, augmentation of fluid intake. (See Dietary Measures and Prevention of Nephrolithiasis.) Besides advising patients to avoid excessive salt and protein intake and to increase fluid intake, base medical therapy for long-term chemoprophylaxis of urinary calculi on the results of a 24-hour urinalysis for chemical constituents."
Dietary Measures
"In almost all patients in whom stones form, an increase in fluid intake and, therefore, an increase in urine output is recommended. This is likely the single most important aspect of stone prophylaxis. Patients with recurrent nephrolithiasis traditionally have been instructed to drink 8 glasses of fluid daily to maintain adequate hydration and decrease chance of urinary supersaturation with stone-forming salts. The goal is a total urine volume in 24 hours in excess of 2 liters.
The only other general dietary guidelines are to avoid excessive salt and protein intake. Moderation of calcium and oxalate intake is also reasonable, but great care must be taken not to indiscriminately instruct the patient to reduce calcium intake."
posted by treehorn+bunny at 4:04 PM on September 29, 2014 [1 favorite]
- Renal stones (stones in the kidneys, that sit there and don't cause symptoms until they move) are a common 'incidental finding' on CT scans , which unfortunately patients don't always find out about, because the final reading may not be available during an emergency department visit, or doctors may just assume that patients know that since they have recurrent kidney stones, the stones may be there.
- I know that in general, invasive procedures, which carry risks of complications, are only going to be done if the benefits of the procedure outweigh the risks, and that most people with recurrent kidney stones just end up having a kidney stone pass every once in a while (some keep scripts for pain meds/antinausea meds on hand at home in case of recurrence, if they have a good relationship with their doctor) - rather than having invasive procedures to remove stones from the kidneys.
- "Radiolucent stones", stones not seen on x-rays, are made of different stuff - the radiolucent stones are uric acid, cystine, indinavir (from an HIV medication), and pure matrix stones (rare), rather than the common calcium oxalate stones
From eMedicine's Nephrolithiasis page:
"Urinary calculi composed predominantly of calcium cannot be dissolved with current medical therapy; however, medical therapy is important in the long-term chemoprophylaxis of further calculus growth or formation.
Uric acid and cystine calculi can be dissolved with medical therapy. Patients with uric acid stones who do not require urgent surgical intervention for reasons of pain, obstruction, or infection can often have their stones dissolved with alkalization of the urine. Sodium bicarbonate can be used as the alkalizing agent, but potassium citrate is usually preferred because of the availability of slow-release tablets and the avoidance of a high sodium load.
The dosage of the alkalizing agent should be adjusted to maintain the urinary pH between 6.5 and 7.0. Urinary pH of more than 7.5 should be avoided because of the potential deposition of calcium phosphate around the uric acid calculus, which would make it undissolvable. Both uric acid and cystine calculi form in acidic environments.
Even very large uric acid calculi can be dissolved in patients who comply with therapy. Roughly 1 cm per month dissolution can be achieved. Practical ability to alkalinize the urine significantly limits the ability to dissolve cystine calculi."
Stone Prevention: it's not just for people with high calcium levels!
"Prophylactic therapy might include limitation of dietary components, addition of stone-formation inhibitors or intestinal calcium binders, and, most importantly, augmentation of fluid intake. (See Dietary Measures and Prevention of Nephrolithiasis.) Besides advising patients to avoid excessive salt and protein intake and to increase fluid intake, base medical therapy for long-term chemoprophylaxis of urinary calculi on the results of a 24-hour urinalysis for chemical constituents."
Dietary Measures
"In almost all patients in whom stones form, an increase in fluid intake and, therefore, an increase in urine output is recommended. This is likely the single most important aspect of stone prophylaxis. Patients with recurrent nephrolithiasis traditionally have been instructed to drink 8 glasses of fluid daily to maintain adequate hydration and decrease chance of urinary supersaturation with stone-forming salts. The goal is a total urine volume in 24 hours in excess of 2 liters.
The only other general dietary guidelines are to avoid excessive salt and protein intake. Moderation of calcium and oxalate intake is also reasonable, but great care must be taken not to indiscriminately instruct the patient to reduce calcium intake."
posted by treehorn+bunny at 4:04 PM on September 29, 2014 [1 favorite]
I was shocked to learn that I have multiple kidney stones (of various sizes) remaining in both kidneys. My former urologist had somehow neglected to tell me about those remaining stones.
I sympathize. I had kidney stones, and my urologist wasn't the world's best about communicating.
And I also had (and may still have) stones in my kidneys.
The thing is, you and I may pass kidney stones all the time without realizing it. It's only when they're actually blocking a passage, stuck in the ureter for example, that they require treatment. A kidney stone in your kidney is not causing problems, so the normal course of treatment is "do nothing."
posted by zippy at 4:39 PM on September 29, 2014 [3 favorites]
I sympathize. I had kidney stones, and my urologist wasn't the world's best about communicating.
And I also had (and may still have) stones in my kidneys.
The thing is, you and I may pass kidney stones all the time without realizing it. It's only when they're actually blocking a passage, stuck in the ureter for example, that they require treatment. A kidney stone in your kidney is not causing problems, so the normal course of treatment is "do nothing."
posted by zippy at 4:39 PM on September 29, 2014 [3 favorites]
Response by poster: Thanks for all the helpful answers. I also found the following reference on Medline. I'll try to get the full text.
Nat Rev Urol. 2012 Mar 27;9(6):315-20. doi: 10.1038/nrurol.2012.43.posted by alex1965 at 8:31 AM on September 30, 2014
When (and how) to surgically treat asymptomatic renal stones.
Goldsmith ZG, Lipkin ME.
Asymptomatic renal stones are identified in 8-10% of screened populations. With the increasing utilization of CT, the number of patients seeking urologic care for incidentally diagnosed renal calculi is likely to increase. Such patients present an important management dilemma: differentiating those to treat surgically from those who can be safely observed. Observational studies have revealed that approximately 50% of asymptomatic stones will progress, but most will not require surgery. Stones >15 mm in diamater and located in the renal pelvis are at highest risk of progression. Although no guidelines exist for the optimal monitoring regimen for asymptomatic stones, follow-up studies may include serum creatinine, plain radiography, ultrasonography, and CT. Shock wave lithotripsy (SWL) does not seem to offer significant benefit over observation for asymptomatic calyceal stones. Percutaneous nephrolithotomy does improve stone-free rates compared to SWL or observation. Additional research is needed to characterize the role of ureteroscopic management of asymptomatic renal stones.
I'm a 56 YO woman. I have peed out 44 calcium oxalate stones since January 2091. Been hospitalized 4 times; admitted one time for an overnight stay, and treated in the ER the other three times. Most recent ER visit was last night! After my #5 stone, my local family practitioner doc sent me to a urologist. Let's call him the PD (Pee Doc!).
PD is nicely communicative and also was very straightforward about my issues. Family and friends kept telling me to insist on having all my pesky stones removed, or "blasted" or vaporised, or whatever their second cousin's sister's boyfriend had done and now he's all better!! So I asked PD could he do one of these cool procedures on me so I too could live stone free. PD sat me down and explained about the many different kinds of kidney stones.We already knew I have calcium oxalate stones. (I fished my very first stone out of the toilet after I heard it plink against the bowl. Yes, it was that big.) And my GP had the good sense to send it off for analysis. Lesson here-try hard to catch a stone. Best to know what you are dealing with.
And PD had a lot to say about intervention and my stones. As painful and horrible it is to go through a kidney stone episode, mine come out. I manage the pain, and go to the hospital if it is beyond what I can stand. PD told me in great detail about potential complications associated with the various methods of removing stones. I have a brother and an uncle who have had stents, lithotripsy, and surgical interventions in their kidney stone events. It was absolutely necessary for them, since their stones were too large to pass. They both had complications. It was a long painful recovery. PD emphasized that as long as mine are passing, that this is the least traumatic course of action. I am always going to be a stone maker. I aim to do the least damage to my body and for me that means letting my stones pass with pain management. I hope my experience will give you some ideas for discussion with your doctor. Memail me if you have questions or want to talk. The emotional toll of living with kidney stones is something to deal with! I am very grateful every time I have a stone that I am a woman! Good luck to you.
posted by LaBellaStella at 1:47 PM on October 29, 2014 [1 favorite]
PD is nicely communicative and also was very straightforward about my issues. Family and friends kept telling me to insist on having all my pesky stones removed, or "blasted" or vaporised, or whatever their second cousin's sister's boyfriend had done and now he's all better!! So I asked PD could he do one of these cool procedures on me so I too could live stone free. PD sat me down and explained about the many different kinds of kidney stones.We already knew I have calcium oxalate stones. (I fished my very first stone out of the toilet after I heard it plink against the bowl. Yes, it was that big.) And my GP had the good sense to send it off for analysis. Lesson here-try hard to catch a stone. Best to know what you are dealing with.
And PD had a lot to say about intervention and my stones. As painful and horrible it is to go through a kidney stone episode, mine come out. I manage the pain, and go to the hospital if it is beyond what I can stand. PD told me in great detail about potential complications associated with the various methods of removing stones. I have a brother and an uncle who have had stents, lithotripsy, and surgical interventions in their kidney stone events. It was absolutely necessary for them, since their stones were too large to pass. They both had complications. It was a long painful recovery. PD emphasized that as long as mine are passing, that this is the least traumatic course of action. I am always going to be a stone maker. I aim to do the least damage to my body and for me that means letting my stones pass with pain management. I hope my experience will give you some ideas for discussion with your doctor. Memail me if you have questions or want to talk. The emotional toll of living with kidney stones is something to deal with! I am very grateful every time I have a stone that I am a woman! Good luck to you.
posted by LaBellaStella at 1:47 PM on October 29, 2014 [1 favorite]
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The largest ones are over a centimeter. I'm told it looks a little like an asteroid belt in there. (This is due to a hereditary kidney disease.)
Due to the kidney disease, I am not a candidate for the shockwave therapy and surgery would be particularly dangerous for me. So we've just let them live there. It's been nearly ten years since we first discovered them. They just hang out. I keep pretty intense painkillers on hand just in case any of them decide to descend. It's my only option.
Perhaps your doctors, like mine, feel like more aggressive treatment would be more dangerous than just letting them pass (or stay)?
posted by mochapickle at 9:48 AM on September 29, 2014 [2 favorites]