A QUESTION TO MY READERS

My Question

Tell me what you want next on this site; that is my question.

I have been writing this site – with the able help of my co-authors – since July 2014, and have reached what I might call a kind of plateau. Much of what I came to say about the most common kinds of kidney stone patients is said. Because the main work is done for the moment I have come with my question to you.

The readership of the site has grown from 50 people in the first month to a present running average of 55,000 – 58,000 people monthly, depending on the season, and many of the visitors read quite a bit each. People find the site valuable, and I am happy for that.

But, what next? I can guess, I can plan, and I can write.

I can also ask.

You might question why I chose Wedding Dance Outdoors by Pieter Bruegel the Elder. The picture is wonderful, so my reasons may not matter all that much.

Up Till Now

Because I set out to create a definitive site, not a mere collection of opinions, I built a three layer cake.

Primary articles rest on peer reviewed literature and have links in them – some say too many, some say not enough – to scientific papers on PubMed. Secondary articles elaborate on and explain the primary ones in less technical detail. They link back to the primary articles rather than to PubMed. Public articles are for patients and their families. They show how science gives us useful ways to prevent stones. They have fewer links, and those are mainly to secondary articles.

For the first two and one half years I concentrated on patients who have no complicating systemic diseases. Most of what I would choose to say is written. What remains is editing, fixing links, updating and the general curating of what is there.

The Next Phase

I am asking you questions because I would appreciate your help.

What kind of articles do you want? More primary articles with all their links to PubMed? More explanatory ‘secondary’ articles? More public writing?

DId you like the video format?

What topics do you want more of? What have I left out?

My Ask

Comment on this brief article and give me your answers to my questions.

Your Responses

As of 12/13/16 you provided 18 comments, all good. In addition, three people simply added their ideas via my email. Because I want all of the comments visible, I am pasting them below.

Brian Lindsey:

I like to hear more and know more about acid reducers and how they affect the Kidneys and the effects on creating Kidney stones. I can say I have had more Kidney stones since I started with Prilosec then I did before I have stopped taking that and my stones have decreased in forming since is this a common theme ???

Andrew Dahlberg:

I have enjoyed reading your informative emails over the past year. A future topic for consideration may be one addressing Oxalates and how they specifically impact the creation of kidney stones. Along with this it would be very interesting to hear more about what other types of green vegetables you would suggest can be substituted for those high in oxalates as I find it difficult to get the appropriate number of vegetable servings recommended.

Thank You for your newsletter and more importantly all the research you and your colleagues do.

Linda Robin:

Topics
Foods to avoid that contribute to the make of stones
Good foods to eat to stay healthy
Subject of how much water to drink a day
Why take potassium pills if you have kidney stones
Why take a water pill if you have kidney stones
Importance of exercise as we age
Why we need to keep our bones strong
The facts re osteoporosis
Happy and Healthy Holiday
You are the Best
Thank you for all the wonderful medical advice that you provide
Warmly

A Summary of What You Asked For

I have made a table of all requests and ideas. It is an extract of all of your comments below.

Some things are already on the site, meaning I have not done so well with organization.

Some will need new articles and I hope to write them.

41 Responses to “A QUESTION TO MY READERS”

  1. Kristina Donofrio

    I love your style of writing and data sequencing, Dr. Coe. Today was the first time I found and read any of your articles.
    Serum uric acid reaches saturation and precipates. The precipitate collects in various joints causing symptoms for gout.
    Serum uric acid is removed/filtered by the kidneys and sent to the bladder for elimination.
    Do the kidneys accumulate uric acid in the filtering process, where uric acid might precipate to form or make larger stones?
    Do we know if gout leads to kidney stones?
    Do stones inhibit uric acid filtration, raising serum concentration so gout occurs?
    Do the kidneys distinguish and prioritize candidates for filtration?
    What impact does bile (and gall stones) have on uric acid processes?
    I would also like to know how the endocannabinoid system influences our filtration systems.

    I REALLY appreciate this opportunity you’ve given us. I have a million more questions!

    Kind Regards,
    Kristina

    Reply
    • Fredric Coe, MD

      Hi Kristina, Thanks for the compliment and that you enjoy the site. It is serum sodium urate that crystallizes in joints; blood pH is too high – 7 – to permit uric acid itself. Filtration of urate has no crystallization risk, and in the tubule fluid sodium, potassium and ammonium hydrogen urates do not supersaturate enough to cause crystals; but in the terminal parts of the nephrons pH can fall and uric acid itself crystallizes. There are subtleties. WHen serum urate levels become high enough – not sure about the level – tubules could plug with urate salts – so called ‘urate’ nephropathy as distinguished from uric acid nephropathy which is uric acid crystallizing in the terminal parts of the nephrons and in the final urine. Doubt exists about whether urate nephropathy occurs and how often. As for filtration, urate is alone in blood – uric acid is not present above trace amounts because of the pH. The endogenous endocannabinoids may indeed affect renal filtration because exogenous compounds do. Anandamide at least in rate, reduces filtration by dilating both the afferent and efferent arterioles. Likewise there is evidence for cannabinoid receptors in cultured renal proximal tubule cells and when occupied they signal changes in tubule cell tubule cell sodium handling that itself can control filtration via tubulo-glomerular feedback. I hope this gives at least some sense of what these compounds may be doing. I do not discuss them on this site as they have no obvious relationship to kidney stones. Best, Fred

      Reply
  2. Christine Routh

    Hello, Dr. Coe.

    Do you have any articles regarding matrix stones? I haven’t been able to find anything real specific around what the exact cause is, side effects, etc.

    Sincerely,
    C Routh

    Reply
    • Fredric Coe, MD

      Hi Christine, I am sorry to say I do not have anything on matrix stones. Are you sure no crystals occur in your stones? Be sure, because if any do the answer is to prevent them. Regards, Fred Coe

      Reply
  3. andy

    Dr Fred,
    your library length of information on this site is wonderfully educational. Not only has a link to the site stayed in my email inbox but I keep coming back to read 😂. Glad to read about citrate benefits. I’m on fresh lemon juice…

    I wonder if it is possible to add your knowledge of how bladder diverticulum can harbour multiple crystals,stones/size increase over time and how antibiotics can fail to clear a bladder infection that is being seeded by interlayered stones/multi bacteria in bladder diverticulum.

    Reply
    • Fredric Coe, MD

      Hi Andy, Thanks for the comment. Crystal formation and persistent infection in a stagnant chamber like a diverticulum – many would say it long dwell time itself permits urine to dissipate its supersaturation in crystal formation and bacterial infection of crystals that hampers antibiotic clearance. I have not written on this and need to. Whether the theory of mere stasis suffices – that is moot. Regards, Fred Coe

      Reply
  4. Midge Gilmour

    Dr. Coe,

    Thank you so much for your informative and easy to understand articles. I would like to know if there is any literature out there linking kidney stones to Cushings Syndrome. Also, my son Morgan who is in his second year of medical school would like to know if there is an established link between Cushings Syndrome and kidney stones, what is the biochemistry/disease process behind the link?

    Are there any links between thyroid disease and kidney stones?

    Thank you again for being so engaged with your patients.

    Sincerely,
    Midge Gilmour

    Reply
    • Fredric Coe, MD

      Hi Midge, Cushings can cause stones because it can cause hypercalciuria. In a lifetime I have seen it only rarely. You have probably surmised that my site has yet to contend with the systemic diseases. It is the next phase, easier in a way but detailed. As for thyroid disease, hyperthyroidism is a cause because of hypercalciuria. I will add these to my list. Warm regards, Fred

      Reply
  5. Stéphane Holistique

    Hello again, About the kind of articles. I like primary article more because I like to understand all in detail. But the secondary are nice, to have the whole picture, and in case the primary was too complex.

    Thanks for your extraordinary work and dedication to help others.
    Stephane Holistique

    Reply
  6. Al R.

    Hi Dr. Coe,
    First, warm congratulations and thanks are in order! This is a tremendous milestone and a great gift to all who suffer from kidney stones and to the doctors that treat us! I started reading in 2015, and assumed the site must have been around for many years because of its breadth.

    Thank you for asking for input. I have found the videos to be well chosen and they really helped to crystalize the concepts in my mind (no pun intended.) That said, I’m an analytical reader at heart and gravitate toward you primary articles. I have a number of ideas for articles of various types. Some would likely require new research.

    1 – How to diagnose the sub-types of IH (absorptive, renal leak, etc.) using supersaturation tests, blood work, bone density, or etc.
    I see many scattered dots in your graphs that deviate far from the averages, and my hypothesis is that some of this might be explained by different subtypes. Various treatments also seem to work better for some than others (e.g. me). My thought is that knowing more about the root cause of one’s IH could improve outcomes.

    2 – Significance of not just what we eat and how much we hydrate, but when.
    Calcium coincident with oxalate containing foods is a key example. This seems like an area ripe for research. Fortunately many patients can be stone free without worrying about this level of detail, but others are harder cases, and it may help many when traveling. We have already discussed eating a day’s protein in one large meal vs. more spread out. I am also very interested in how supersaturations rise and fall over the hours following a meal. Graphs would be wonderful. Some foods seem to cause a quick spike. And you have taught me that others, such as salt, have an effect averaged over several days. (I’ve been investigating using test strips to collect such data, but it has been challenging to get accurate and repeatable readings with the resolution I would like.)

    3 – How our body acts, and how supersaturations and stone risk vary day vs. night.

    4 – Effective strategies – thinking outside the box – to avoid kidney stones during travel. Consider airport/airline food, limitations on hydration (e.g. due to limited rest facilities), unfamiliar food overseas, and limited availability of nutrition information. It’s a zoo.

    5 – Significance of, and how to interpret blood work, such as renal panels to track progress of treatments.

    6 – Continue your excellent work on interpreting supersaturation reports and explain the rest of the parameters, such as UUN 24. Also more on high creatinine, and on factors that can skew PCR.

    7 – Research new inhibitors which could be injested to add to the well-known benefits of citrate.

    8 – As already suggested, perhaps a dedicated article highlighting the relationship to bone disease. Perhaps explain when DXA scans are appropriate.

    9 – As already suggested, more on phosphate stones and dietary considerations.

    10 – Risks, benefits, tradeoffs of ureteroscopy vs. ESWL and other topics and suggestions related to passing of stones.

    11 – How to make the best use of imaging, and tradeoffs of each. False positives, false negatives, minimizing radiation exposure risk, etc.
    E.g. I find ultrasound has often greatly exaggerated stone size. And have a friend that had ureteroscopy without a CT scan first to confirm other imaging, only to find that there weren’t actually any stones. Also whether doing CT scans both with and without contrast make any sense, given the amount of radiation, if it is clear that pH is far too high to support uric acid stones.

    12 – Research on ways to reduce urine pH when needed for CaP stone formers without requiring the unwanted an unhealthy release of calcium from the bones to stave off metabolic acidosis.
    13 – Comparison of various potassium supplements, including side effects such as stomach irritation. Citrate vs. Chloride vs. Gluconate, etc.
    My pharmacist said KCl seems to be the worst, and I don’t seem to be able to tolerate even ER tablets. Also get the word out on the importance of the serum potassium level on Cit 24 and the SSs.

    While we’re talking about the upcoming year…given your appreciation for beauty, you might enjoy taking a well-earned vacation here: http://kidneystones.uchicago.edu/treatment-of-idiopathic-calcium-stones/. I’ve had the privilege of standing in that spot. Glacier NP is beautiful. And if possible, continue to the Canadian Rockies for gems like Morrain Lake-my personal favorite. Do go in the summer, however. Winters are long and some roads may be closed for three seasons.
    Thank you again, and best regards, Al

    Reply
    • Fredric Coe, MD

      Thanks, Al. No, the site began just 2.5 years ago, and it has indeed taken up a lot of time. Very worthwhile, and I think lots of people use it to their advantage. I will add your comments to my table – linked to the article, and try to answer to them over time. I would like to go to the parks again, and perhaps I will. Warm regards, Fred

      Reply
      • Al R.

        Hi Dr. Coe,
        I have been re-reading many of your articles this year and really appreciate all the work you have been doing to update and to add new content. I found FLUID PRESCRIPTION FOR KIDNEY STONES of particular interest and help with my questions above!
        Thanks again! – Al

        Reply
  7. Lisa M Viviano

    Hi Dr. Coe!
    My question is this. I have been diagnose with MEN1 and before I was prescribed Natpara I was taking 8000 mg/day of supplemental calcium approved by my endocrinologist after parathyroid cancer x 2. There were some hiccups during my initial Natpara treatment and I was on far more than the 1200 mg/day I’m now taking. I’ve had a 24 hour Litholink test done and my urologist says my risk factors for more stone formation are minimal. I’m still suffering from symptoms daily, though. It’s miserable. Any idea how long it will take to clear my renal system from them? THANK YOU!

    Reply
    • Fredric Coe, MD

      Hi Lisa, I take this as two entries. One is that we need some articles on the site about primary hyperparathyroidism and its related diseases. The other is about you. I believe what you are describing is this: You have a diagnosis of parathyroid cancer for which your parathyroid glands have been removed and you are therefore hypoparathyroid. For this you were taking 8,000 mg/day of calcium and then put on parathyroid hormone and presently 1,200 mg of calcium. You have symptoms I presume are from low blood calcium. The drug is supposed to be used in a combination: serum 25D is in the normal range; active vitamin D may be used to minimize the dose of PTH; calcium supplements are adjusted to maintain serum calcium. If you have symptoms you need more calcium supplement, and this is reasonable as your urine calcium is – I gather – not high. I would bring the urine data to the endocrinologist who is actually treating you, as he/she is the one who needs to navigate between blood and urine calcium. I take it what you mean by clear your renal system is somehow get rid of stones. They will not dissolve, so if they pass the goal is to not form more – thence the concerns about your urine calcium. Your care is really complex, and I am sorry for so long a note. Long as it is it is not complete because your physicians have access to the real data and I am simply inferring. Regards, Fred Coe

      Reply
  8. Meghan

    If you had kidney reflux (grade 1) as a child, would that scar/damage your kidney? Would it cause constant kidney pain as an adult? I have the symptoms of MSK without the actual sponge kidneys.

    Reply
    • Fredric Coe, MD

      Hi Meghan, Reflux can lead to scarring as well as high blood pressure and loss of kidney function. Pain would be more likely if scarred regions became infected. Another possibility is obstruction has developed or reflux remains. Your urologist has probably looked into all this already. Warm regards, Fred Coe

      Reply
  9. Laura Bousada

    First of all I would like to thank you Dr. Fred Coe for all of the times and effort and love that you have already put into this site. It is a remarkable site and appreciated by so many. I don’t want much for the future of this site except for all you can keep giving, all your knowledge all your patience and information that I know was found though many years of research and data and late nights. If I wanted anything for myself from here it would be more info on the exact differences of tubual pluggings and msk. Also, everything that you know about brushite stones to have come to the conclusion they are nasty. You are one in a million and we here in my group all appreciate all what you are doing for kidney stone knowledge. Thank you from the bottom of my stoney kidneys and of course my heart.

    Reply
  10. Stéphane Holistique

    PS : Why recommand to take less oxalate to prevent calcium oxalate even in people without hyperoxaluria? Same question about purine for uric acid stone without Hyperuricosuria. It must be other things, lack of inhibitors maybe?

    Thank you,
    Stéphane Holistique

    Reply
  11. Stéphane Holistique

    – Other thing about leaky gut is that it will provoke inflammation in the body by allowing macro-molecules in the body. Is there a clear relation between inflammation or auto-immune illness and kidney stone. My theory is that there’s some molecules pro-inflammatory that will be pro-kidney stone also and other molecule anti-inflammatory that can naturally inhibit them. I’ve seen a paper that discuss the relation between inflammation and kidney stone in one of your article. And another article discuss the protein and other molecules in the urine who can be pro KS or inhibit them. So the idea that I’d like to back up with science is : if we have an inflammation in the body or an auto-immune illness who come from an inflammation from a leaky gut like when a person is lactose intolerent or gluten intolerent or just eat junk food with chimicals that are pro-inflammatory, this inflammation and the resulting molecules are pro kidney stones. Whereas a body without any inflammation will have enough inhibitors to inhibit kidney stones even with little liquid.

    My goal is to find what clicks, what are the fundamental causes of kidney stone in order to get out of the “drink a lot of liquid and take a diet for the rest of your life”. I don’t like the idea of a kidney stone former as a illness. I think that it doesn’t exist, but it’s a consequences of other various things and I’m trying to look for the global ones like inflammation and auto-immune illness, bad gut microbiome, acidosis and of course bad diet as an unbalanced diet who form unbalanced urine.

    If you can comment these ideas it would help me in my research a lot, and hopefully your readers too.
    Thank you,
    Stéphane Holistique

    Reply
  12. Stéphane Holistique

    Hello Fred and thank you for the remarquable ressources provided in this site.
    I have a blog on kidney stone, and I’ve learn a lot from you and still do. By the way, it’s a french blog colique-neprhetique.fr

    So, I have some simple questions that lead me to some theories if you can help with:

    – Why do some form kidney stone and others don’t even if they eat and drink the same thing. To form a kidney stone it has to be an exagerate reaction not just a simple genetic disposition. So I’m wondering if there’s other things that can make a big difference.
    – Another question, is what is changing with age, why I am forming kidney sontes at 31 and not at 15 when I was working out and playing football without drinking any liquid for hours. What have changed in my body. What can I do to change it back?
    – I’ve read that the camel can produce a very saturated urine and even with that don’t have kidney stone, how is that possible? I wonder what inhibitors he got, probably not all citrate. It will be interesting if we know what are all the inhibitors to see if the kidney stone makers lack them and why are they lacking them. Maybe we focus a lot on citrate because we lack information about the rest of the inhibitors. It’s never that easy in the human body.

    – I’ve read someone talking about gut microbiome, and that’s a nice start. Studies pointed out the fact that some bacterial gut transform oxalate into other thing. They also have a defensive role against leaky gut.
    – Leaky gut is another interesting principle for kidney stone to study as it may facilitate the passing of different indesirable things to the blood and then to the urine.
    next comment…

    Reply
  13. Terri Jensen

    What beverages are recommended besides water to achieve high fluid intake? What if you also can’t tolerate artificial sweeteners or lactose? Are there any beverages that can increase your chances of stones?

    What is the recommended low stone producing diet for eating at restaurants?

    Reply
  14. Jeff

    Dr. Coe

    Thanks for all the analytical writing that you do regarding stone development and prevention. I now have more knowledge about kidney stones than half the doctors I have seen over the years. Since I have read all of your articles I will keep my suggestion / request short and to the point. I would like to see an article that discusses the relationship between malabsorption issues and their influences on stone development and how malabsorption issues may complicate prevention. The hot malabsorption issues currently are celiac disease and bariatric surgery; however I would be most interested in ileostomies as that reflects my personal situation. Thanks.

    Jeff

    Reply
  15. Eric Rounds

    Dr Coe,
    I am immensely grateful for your site and your generous good work. You are rare in that you obviously have a deep love for research and gleaning the practical from it AND communicating with people/patients about approaches to applying what we know now to day to day disease management. My brief history of stones is having one 8 years ago, with no stone capture, no real analysis of underlying conditions….classic urgent care situation. And then having 3 stones requiring lithotripsy in a period of a year and half. Finally via your articles and being super aggressive with my urologist and then nephrologist, have gotten on a path of lifestyle change (superhydration and low Na diet) and medication that seems to be fixing my high pH urine and proneness to supersaturations.
    Part of my ongoing questions have to do with the balance between the ideal dietary guidelines to prevent stone formation and a perhaps not so strict set guidelines that go along with drug interventions. Put another way, my uncle a retired physician, said to me in the midst of my most rapid stone formation, something like, “you should be able to get the right drugs to prevent stones without any change of diet”. That seems over-stated. I have chosen to take hydrochlorothiazide and K-Citrate AND push fluids hard, AND not add salt to food, and reach for low Na or no Na products where possible (for example no salt corn chips). But obviously, low sodium in particular is a constant battle. I recently discovered that even super simple, healthy so called “artisanal” bread can easily have 200-400mg of Na per slice. Yikes! When I’m trying to stay at roughly 1500-200 per day, and having two slices of toast and scrambled eggs for breakfast and I’m potentially halfway to my total before leaving the house! But I guess what I’m trying to understand is if I’m taking the drugs, maybe I’m being crazy about so closely watching inherent Na content in foods (as opposed to settling with just not adding salt out of a shaker). To be honest, food and weight control have been a constant battle in my life for a few decades. So this is particularly thorny struggle. Again, thank you very much for your wonderful work in research and patient education.
    Eric Rounds, Santa Fe, New Mexico

    Reply
    • Eric Rounds

      Correction to my post, I am taking chlorthalidone, not hydrochlorothiazide.

      Reply
  16. Marvin jansen

    Do water pills really help prevent stones?

    Reply
  17. Pam Edwards

    This site has been the most helpful I have ever come across in helping me understand kidney stones, thank you so much. I would like some articles on kidney stones and bone health, having experienced a vertebral fracture (without a traumatic event) and having no osteoporosis, cause unknown. I would love to be able to take preventative measures to improve my bone health going forwards, and to understand the connection between kidney stones and bone health. Video format for information generally would be great, but I also appreciate the articles of all kinds.

    Reply
  18. Margaret HELEN

    New to your site. I’m 71 with stones starting around age 35. Many family members have had oxalate stones. One of several other health issues for me is bariatric surgery.
    Updated information is not available via my HMO. I donated LOW OXALATE COOKBOOKs to their patient education center a decade ago to bring them into this century as their oxalate info was dated. The books were created for Vulva pain sufferers. (SOLD BY AMAZON) t. A researcher tested all the oxalate values listed in the front of the books. The scientists has been retesting values for prepared high oxalate foods since the research had only been on raw foods. This group seems to be deminishing but their information was once the best I could find.
    I can do email and go to a website and not much else. I’m overwhelmed on most sites. I don’t know where to start or a path to follow. I do know this site is where I want to get my info. I would like to see a guide on this site. Something like categories.
    for Meds for stones, supplements, a few foods to avoid etc. I’d like to know if it makes a difference if I eat protien or chocolate a little through out the day or in one sitting.
    I had stones removed recently so production hasn’t stopped with age. I need easy to follow information. Food ideas that require a few ingredients and very little of my limited energy. Thanks for asking for input.

    Reply
  19. Angelica Ely

    I am a patient. Why no follow up visits appts? Is seeing you again and testing not important? How do you know I am doing well? How do you manage your patients for follow up, test, treatment?

    Thanks

    Reply
  20. Tim Loest

    It seems that more and more health conditions relate back to the health of one’s gut. I would like to see an article discussing the influence of a healthy or unhealthy gut microbiome on stone disease. Assuming that a connection exists between gut health and stone formation, healing the gut and/or targeted supplementation with specific nutrients or probiotics might be another weapon in the arsenal against stone disease.

    Reply
  21. Peg Nicholson, NP-C

    Fred,

    your site is a wonderful resource. I only signed on a few months ago, and I have to admit I haven’t caught up with all the articles yet, so these ideas may be well covered already. I’m an FNP–a newbie–sole provider at a small rural clinic, with no nearby specialists. So basic clinically oriented articles are always welcome.
    In particular, anything explaining kidney stone manifestations in Urinary Analysis results would be good.
    Also, thinking of the stones and bones rhyme, anything related to severe osteoporosis, (or osteoporosis headed towards severe) would also be good.
    I’m also seeing lots of poorly controlled elderly diabetics with CKD, so anything pertaining to their treatment, diagnosis would be good.
    Also, I’m very interested in Vitamin D deficiency, of which I’m seeing a lot of in the north of NV.
    And let’s see: anything on nutrition. I see many people with no insurance, or with ferocious co-pays that might as well be no insurance, when my pts can’t pay them. So any conditions that can be improved by diet rather than pills or supplements is always good.
    And again, I imagine you’ve done much of this already. I need to carve out more time to read your excellent work.
    BTW, do you have ECHO up in our part of the world? We have monthly video consults here chaired by experts. Not sure if we have one on kidney issues, but we sure should.
    thanks and best,
    Peg Nicholson

    Reply
  22. Audrie Schell

    Hi Dr Coe. Thanks so much for taking the time to research on and write informative and helpful articles for those of us who need them! I would like to learn more about bone health – how kidney disease plays a role and how hypertension, vitamin D and calcium are linked. Your articles have helped me educate myself a lot since I have been diagnosed with MSK in January, 2015. There really is a paucity of information and I really appreciate the fact you have put yourself out there to help us all. Look forward to your next submission! Happy holidays to you and yours….A. Schell

    Reply
  23. Cecile Behymer

    With MSK and non-moving stones, some of us have pain in the flank or side, under the rib cage. Most doctors do not believe we should be having pain unless the stones are moving, which causes us to suffer and have a decreased quality of life. Also what pain management treatment or protocols could benefit us. Thanks.

    Reply
    • Beth DB

      I have a similar question as Cecile. I have had one stone attack but initially they said the pain was not from the 7-8mm stone that they see on catscan in the mid to upper pole of my kidney. Because there was no blockage. I since get sporadic renal colic pain that is helped with Advil. I have consulted FIVE urologists. One says leave it alone – until it starts to travel. 3 others said the would TRY ESWL but no guarantee it will work and no guarantee that it won’t cause smaller fragments to clog a ureter. And then my most recent consult said he would not even bother with ESWL. I already know my urethra needed dilation for cystoscopy so likely fragments could get jammed in my ureter. He said based on the fact that i have pain off and on it should be treated. Also the catscan says it is probably in an upper pole infundibulum – so he feels he can best get it with Ureteroscopy and Laser Lithotripsy. Because I am young (reasonably – lol, 50 years old) and very healthy the general anesthesia is worth the risk. He did say he might not be able to get in to the ureter, so i might need a stent for 2 weeks and then he’d go back in and laser, but he won’t know that until he gets in there. Tough decision but I just don’t want to worry about future attack of the pain or if stone travels.

      Reply
  24. Katie Winner

    I would love help with a diet for Calcium Phosphate stones. Is there a low phosphate diet?

    Much thanks for all your wonderful info!!

    Reply
  25. Ronald Quinn

    Interested in Kidney Stone research and innovations in treatment.
    Also interested in Kidney Stone Clinical Trials and locations.
    Also interested in Kidney Stone Home Healthcare Tests and Treatments.
    Merry Christmas and a Prosperous New Year from Ron and Ella Quinn

    Reply
  26. Stephen Knohl

    Dr. Coe,

    Many thanks to you and your colleagues for launching this site and for your contributions to stone disease. As a physician specializing in the metabolic profiling and prevention of stones, I find the articles engaging and educational (and to the latter, I very much appreciate your efforts to link your writing to the fine arts).

    In terms of future articles, I would like to see more clinical vignettes with the relevant urine, blood, and imaging diagnostics with special attention to the physiologic interplay of the presented chemistries in addition to your approach to management.

    Thanks…and Happy Holidays!

    Reply
  27. Jay Fahn

    A low oxylate diet when combined with a heart healthy and diabetic diet leaves the patient with fairly narrow choices and makes dining out ( in restaurants or as a guest in a home ) less than enjoyable. It may be mundane but it is at mealtime that most stone formers confront their condition. Perhaps your readers would appreciate a section focusing on navigating this “narrow channel” since by middle age many of us are dealing with multiple health issues and not just stone formation.

    Reply
  28. Celia Grace

    Hi Fredric
    I would like to see an article that clarifies the difference between MSK and stone disease symptoms, possible connections with both, if any as many of our members also suffer from many of the coexisting symptoms, hypercalciuria, hyperoxaluria, calcium oxalate stones, calcium phosphate duct plugging (in the past belived to be part of MSK) and nephrocalcinosis
    Unfortunately there still seems to be a lot of confusion in our MSK support group, where most members have been diagnosed with MSK and claim that kidney stone prevention diets don’t work for MSK patients who may be unaware that many of the symptoms are also part of stone disease which according to your Kidney Stone Diet articles based on research, experience in treatment, can also be treated through diet (combined with high water intake and stone prevention meds).
    Thank you for all your hard work and dedication!

    Reply
  29. Becky K.

    I’d love to read about possible tips for people, like myself, who do not tolerate diuretics like chlorthalidone or HCTZ.

    Also, alternative suggestions for those of us experiencing the pain of stones but for whom it’s not realistic to go to the ER each time because of the cost and their demand for a new CT scan as “proof” every time. Home healthcare? Taking Flomax all the time? If I went to the ER each time I had a stone, I’d practically live there.

    Thanks Dr. Coe!
    -Becky

    Reply
  30. Becky Klugiewicz

    I’d love to read about possible tips for people, like myself, who do not tolerate diuretics like chlorthalidone or HCTZ.

    Also, alternative suggestions for those of us experiencing the pain of stones but for whom it’s not realistic to go to the ER each time because of the cost and their demand for a new CT scan as “proof” every time. Home healthcare? Taking Flomax all the time? If I went to the ER each time I had a stone, I’d practically live there.

    Thanks Dr. Coe!
    -Becky

    Reply

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