If, for some strange reason, you set out to design a kidney that could form stones as quickly as possible, you might end up with something like a medullary sponge kidney.
Medullary sponge kidney (MSK) is a condition in which a portion of the kidney known as the medullary pyramid is found to have dilated tubules (tubules are small tubes through which urine drains) and numerous small cysts (cysts are fluid filled hollow spaces). The cysts are small, measuring from 1 to 8mm, but are numerous. The cysts give the kidney, when cut, the appearance of a sponge – from which the name of “medullary sponge kidney” was coined. These cysts and dilated ducts lead to poor drainage, making it easier for stones to form. These abnormalities can be seen throughout both kidneys or may be localized in only one part of a kidney. The stones formed in MSK tend to be numerous and scattered throughout the kidney.
How do I know if I have medullary sponge kidney?
Medullary sponge kidney is felt to be non-hereditary (you don’t pass it on to your children). Many patients with MSK never develop problems and don’t know they have the condition. One study estimated that MSK may occur as commonly as 1 in 200 persons while other more conservative estimates report an occurrence rate of 1 in 5,000 to 20,000 persons.
Because many patients with MSK develop no symptoms and remain undiagnosed, reliable data on how many will form stones is not available. In one study of 56 patients from one hospital, the authors reported that 30% of the MSK patients that they studied never developed stones. Among the stone formers, MSK appears to be more common in females and usually first presents in the 30s.
The diagnosis of medullary sponge kidney is made with imaging studies, either with an intravenous pyelogram (an older type of x-ray) or with a contrast CT scan. These imaging studies will show a characteristic distribution of stones or calcifications in the location of the medullary pyramids and contrast pooling in dilated tubules. In order to confirm the diagnosis, the imaging study should include intravenous contrast in order to demonstrate the dilated tubules that are the hallmark of MSK. However, most CT scans for kidney stones are performed without contrast and in this case the diagnosis, while likely, is not considered definitive because other stone related conditions can also lead to an appearance similar to MSK on a non-contrast CT scan.
Non-contrast CT scan of a patient with medullary sponge kidney. Multiple stones and calcifications can be seen in both kidneys. To see examples of contrast accumulating in the medullary pyramids of MSK patients on a contrast CT scan or intravenous pyelogram, visit these sites: CT scan or intravenous pyelogram.
What are the symptoms of medullary sponge kidney?
McPhail and colleagues reported that among 56 patients with MSK, the most common presenting symptoms included:
- Flank pain in 52%
- Microscopic blood in the urine in 36%
- Visible blood in the urine in 16%
- Urinary tract infection in 7%
- Abdominal pain in 7%
- Testicular pain in 4%
- Imaging for other causes in 4%
What type of problems can medullary sponge kidney cause?
Individuals with MSK most commonly present with kidney stones, urinary tract infections, or blood in the urine. In individuals with MSK who form stones, other metabolic abnormalities that predispose someone to form stones are also commonly found, including hypercalciuria (high calcium levels in the urine) and renal tubular acidosis (a disorder with the kidney’s handling of acids).
It therefore appears that just having MSK by itself is not enough to form stones (30% of MSK patients don’t form stones). However, combine the abnormalities found in MSK with someone who has a metabolic tendency to form stones and you will often see an astounding number of stones developing throughout the kidneys.
X-rays for patients with MSK are often impressive for the sheer numbers of stones seen. Not all those stones will necessarily be in a position to drop into the ureter and cause traditional stone symptoms. In order to do so, the stones need to have access to the hollow collecting system portion of the kidney. Instead, many are often embedded in the solid tissue of the kidney (the parenchyma) where they are unlikely to result in a stone passage.
In some patients however, the non-obstructing stones seen in MSK can be associated with significant and chronic pain, even if they are not passing. The pain in this situation can be constant in nature, unlike the episodic pain traditionally seen with kidney stones. It is not certain what causes this pain but authors have proposed that the small numerous stones seen in MSK may cause obstruction of the small tubules and collecting ducts in the kidney, leading to the pain. This pain can be debilitating and treatment is challenging. Narcotic medication, even with large quantities, is often not adequate. Some success with pain control for MSK patients with this type of pain has been reported using laser lithotripsy (see below).
The most common stone types in MSK are calcium oxalate and calcium phosphate.
Thankfully, MSK does not commonly lead to kidney failure.
What can be done about medullary sponge kidney?
Treatment for MSK focuses on prevention and treatment of stones, management of pain, and prevention of infections. There is no treatment available to fix or remove the small cysts and dilated tubules associated with the condition.
In stone formers, maintaining a high fluid intake and treatment with hydrochlorothiazide (to lower urinary calcium) and/or potassium citrate (to raise urinary citrate) are used. Metabolic evaluation with urinary and blood testing can be used to identify specific metabolic abnormalities that increase a person’s risk for stones. In addition, some authors advocate the use of hydrochlorothiazide in all patients with MSK, even when urinary calcium levels are normal.
Treatment for stones that have already formed include the same approaches used for other stone patients, including ureteroscopy, shockwave lithotripsy, or less frequently, percutaneous nephrolithotripsy. Due to the large number of stones formed in MSK and the fact that many of those stones may not be within the collecting system, it is not usually necessary or possible to completely eradicate stones in a patient with MSK.
In patients who have chronic pain associated with MSK, ureteroscopy with laser lithotripsy (called “ureteroscopic laser papillotomy”) may be an option to relieve discomfort. The procedure involves fragmenting and extracting all visible stones in the kidney with the intent to “unplug” and clear obstructed ducts that may have stones trapped in them. In a paper from three institutions, Gdor and colleagues reported on their experience with a total of 65 patients who collectively underwent 176 procedures. All patients in the study had chronic flank pain and multiple non-obstructing kidney stones. 50 patients had followup information available. The majority of patients who underwent this procedure experienced a reduction in their pain (83%). On average, the duration of pain relief from surgery was 26 months. Of note, 17 of the patients in the study had a diagnosis of MSK and their pain relief was similar to that seen in non-MSK patients.
If you have been diagnosed with medullary sponge kidney, share your experience or ask a question below.
References:
Campbell-Walsh Urology 10th Edition, 2011.
McPhail and co-authors, “Nephrolithiasis in Medullary Sponge Kidney: Evaluation of Clinical and Metabolic Features”, Urology 2012.
“Medullary sponge kidney” National Kidney and Urologic Diseases Information Clearinghouse, 2008.
Gdor and co-authors, “Multi-Institutional Assessment of Ureteroscopic Laser Papillotomy for Chronic Flank Pain Associated with Papillary Calcifications”, Journal Of Urology 2011.
Editor’s note: This post was updated on 5/15/12 to include more information on diagnosis, pain related to medullary sponge kidney, and treatment options.
I am 22 just diagnosed with MSK I have not yet seen a specialist have an appointment Thursday. I went to ER this past Sunday when I found out placed on antibiotic and pain meds but not feeling any relief reading this has got me worried. I start a new job Monday and can’t be calling out but by how I feel and reading thing I’m getting really worried any suggestions
Hi everyone, my name is Cassandra, I’m 21 years old and have just been diagnosed 4 days ago with msk. For the past 2 years I have been battling kidney infections, UTI’s, and way more recently kidney stones (i passed 3 small ones for the first time this past August) and when my doctor (I switched Dr’s to find a better one) sent me to a urologist following a ct scan that revealed 2mm stones 1 in each kidney, he told me that I have msk because of my repeated infections, kidney stones, microscopic blood in my urine, sharp pain on my sides and back etc. I was reading all of this stuff on this website and it kinda freaked me out. Does anyone have any tips or suggestions? Thanks everyone.
find a good pain mang. dr. that will give you morpine and try to ge dissability. sorry about the spelling. trust me I have msk for 23 years it only gets worse..
Hi, My name is Misty, I was diagnosed with MSK almost 2 years ago. Local physicians have little to no knowledge about the disease, and most have told me I shouldn’t be experiencing any pain. However my symptoms are as follows: chronic UTIs, right side pain, chronic kidney and bladder infections, CT show up to 50 stones, and my most recent, and honestly the most draining is nausea, bloating, and lack of appetite. I was told the last 3 symptoms were because the cysts in the tubles swell so much that my kidney isn’t filtering properly. Sadly, I have no insurance, and not enough resources to do anything about it. What to do? Any advice for someone who is just giving up?
First thing i would suggest if finding a local health clinic in your area that offers their services for little to no cost and get put on the HCTZ(hydrochlorothiazide) it is not a expensive drug due to me not having insurance and change your diet to a low oxalate diet there are websites that will tell which foods are high in oxalate… ex are spinch tea red berries grits and others if you like you can email me and i can possibly help you out with some of this i just had surgery to remove over 50 stones in my right kidney i just found out about mine in may and the hctz has reduced the formation of the stones greatly already along with my diet i hope this helps
Hi my name is Tim and i have passed over 500 stones. If you dont have insurance Try to get on dissibality. The biggest thing find a DR. Who knows what you really have because 98% of DR dont have a clue. This will only get worse. I hate to tell you this but smoking pot or take a strong drink. This is not a sin if you are using it for med. and take it when you first fell the pain coming dont let it get away from you that a big key. Thanks Tim
I just got home from a Uro appt. with my 20 yr old daughter where she was diagnosed with MSK. So I promptly got on the internet to educate myself on this condition. Most of what I found says that there is virtually no pain assoc. with MSK unless you develop stones or UTIs. So I must admit that some of the info. I found on this site alarmed me. I was hoping this condition wouldn’t cause her lifelong pain. I haven’t shared this with her because I don’t want to scare her. We’ve only dealt with one episode that sent us to the ER but she was in such pain for several days and it was heartbreaking for me. I’m just beginning to understand all of this. What is the name of the facebook group mentioned in some of the posts?
The Facebook group is:
http://www.facebook.com/groups/Spongelife/
There is pain associated with this disease i fight some pain every day feels like a lower back ache… but i do recommend getting your daughter to get into see a nepharologist who can possibly put her on HCTZ (hydrochlorothiazide) which helps stops the formation of the kidney stones and maintain a low oxalate diet … if this goes untreated when she decides to have babies she will have to be on macrobid to help her kidneys with the extra strain other than that she will have a healthy pregnacy when it comes to her kidneys the macrobid helps to stop infection from the extra production of urine…. i just had surgery to remove over 50 stones and mine when untreated for 34 years so thank god you found it early and also get her into a urologist
Im 29yrs of age and was diagnosed with nephrocalcinosis and medullary sponge kidney following a ultrasound for severe renal colic at 17 weeks pregnant. Since then, I’ve had my baby and am 5 weeks postpartum. Last week My nephrologist did a CT scan 3-24 hr urines (i had high urinary calcium during the pregnancy) and several blood test. I received all the results this week, CT included and was told that everything is now coming back normal with no signs of kidney calcifications and it may have all been caused by my pregnancy. My problem is I’m still having daily dull achy renal colic and the nephrologist said its normal even though all the test say I now have no problem. Can this be right? I’m so confused and scared. Please help!
Hey I am not a doctor …. but your scared note struck a cord with me… I wrote a similar post for another condition… so this is just my 2 cents.. and what I have done in the past. Do some research on the web and arm yourself with some information on diagnoses stated above. Trust your gut and get a second opinion from a doctor/specialist (hopefully you can trust). Bring as many facts (recent/past tests, your history and as much facts as you can to assist in getting a second opinion, write down how your feeling.. ensure you are as “realistic” and objective/descriptive as possible), this will help in a second opinion. Be honest about how your feeling don’t feel embarrassed, paranoid or scared.
Your body is coming back online and has gone through a major change (pregnancy and delivery) and is recalibrating… while dealing with your kidney issues……….. Pregnancy stresses out the kidneys… and there are other stresses postpartum… like figuring out how to do everything with little to no sleep…………
There is nothing wrong with talking to someone and seeking additional advisement/opinions. Its your body, you need to feel comfortable… not the doctor or anyone else. Good luck, peace, and enjoy your lovely bundle of joy.
I have had MSK since 16 and am now 40. I have had continuous stones since 16 (too many to count). In 2007 I had my little girl and during my pregnancy my kidneys were dull and achy 1/2 to the end of the pregnancy. I also had 3 kidney stones in hospital at 6 months and had high blood pressure and immense swelling… I usually have that “dull achy renal colic feeling” and it did decrease a couple of months after my pregnancy.
Suggestions – I got a massage to “drain” my water retention after my little girls delivery and it helped alot!. I keep a daily journal, in that journal I have a section for my kidney and write down overall how I am feeling.. this helps my doctor in her reviews and also when kidney stones occur and I have to go into the ER… they have a bit of a background…. It helps to see if there are any patterns overall that link to issues (i.e times of the month I get stones, infections, etc..)
I try to stay optimistic.. kidney stones suck.. true, MSK is crappy, again can’t argue with that one………. but there are worse things out there, I am sure, and glad I don’t have.. I can’t change the cards I was dealt, but I am still in the game and intend to enjoy it. When it gets bad, good doctors, family/friends and oh yeah those wonderful pain killers do help 🙂
– Sincerely Sharon
– Sharon
I was diagnosed with bilateral MSK six years ago when I was 37 years old. My daily chronic kidney pain ranges from a dull ache in my back flank area which radiates out with increasing intensity from there, to sudden, sharp stabbing spasms that take my breath away. What causes kidneys to spasm?
Also, I had an ultrasound of my kidneys recently which indicated cortical thinning in my right kidney to one-third the normal measurement. Is this significant and cause for concern with MSK?
Thanks so much for helping me to better understand the complexities of MSK!
Cortical thinning on an ultrasound suggests loss of kidney tissue and therefore loss of kidney function. You should consider meeting with your physician to discuss this further and to determine whether a repeat ultrasound or additional testing/intervention is required.
Although MSK is not thought to cause cortical thinning itself, repeated episodes of obstruction or infection secondary to MSK may be a possible mechanism for kidney damage to occur.
I have sharp, stabbing spasms, randomly at my ureter.
Thank you thank you thank you! I have been diagnosed with msk after having a 7 mm stone removed and stents placed last oct. since then, I have had almost DAILY knawing throbbing make me vomit, pain in one or sometimes, both kidneys. I have been thru every test, urologist, nephrologist and now finally being referred to pain management. My neph dr told me that there is no way I’m
In pain and that I need to join a church or start praying or take yoga. HOW DOES HE KNOW WHAT MY RELIGOUS NEEDS ARE? I go to church, I pray… I need pain relief and to be taken seriously, not a “life coach” he has said things like, you seem stressed over this, you should calm down…. Of course I am stressed. I have been bounced from
Dr to dr for 14 months now. Seeing this article made me sob. Literally, SOB! To hear I am not a loon is such a good feeling. I am bookmarking and showing my docs. (who probably won’t care)
My nephrologist prescribed chlorthalidone, 25 mg., once a day for treatment of MSK. Is that as effective as hydrochlorothizaide? He also prescribed potassium citrate 1080 mg tab, 1 tablet 3 times a day. I took the potassium citrate for almost a year and a half, but it was causing terrible intestinal/bowel problems and more recently it caused chest pains and hearburn. A few months ago, stopped taking it and I feel much better, but I am very worried because I currently have around 13 kidney stones. l have been searching for an alternative medicine for potassium citrate and have been to several doctors, including urologist, nephrologists and a vitamin/mineral specialist but no one is able to tell me of a substitute for this drug. I am drinking 11 cups of water a day but I feel like I have a ticking time bomb and would like to do more to prevent new stones from forming and the stones I currently have from growing larger. I would welcome treatment ideas as well as the name of a doctor who can treat MSK with something other than potassium citrate.
I know this sounds simple but that’s because it is. I have been ignored by docs for years so I don’t have a diagnosis I just have a lab report stating it. I drink a lot of water no coffe but I drink tea. When I fall ill to the pain I eat a few bananas and I feel way better. I know its not a medicine or treatment but foods can sometimes help us more than modern medicine. Good luck to you and I hope you find something that works for you. 🙂
banana a day helps and watch your diet eat less foods high in oxalate such as spinch your tea is high in oxalate which i love my tea to…. chocalate is another food high in oxalte…
Incredible quest there. What happened after?
Take care!
Just wondering if there were any suggestions on how to get my doctor to help treat my daily chronic pain. Some days it’s tolerable and others excruciating. I try to work full time and be a good wife and mother. Unfortunately living with MSK makes me feel inadequate at almost everything. I spend so much time trying to rest because of pain, fevers, nausea, infection and passing stones, it takes time away from my family and friends. I have been dealing with this chronic illness for so long and it keeps getting progressively worse.
I have asked for the procedure Dr. Wolfe does but my urologist told me Dr. Wolfe doesn’t do that anymore. I have read that he does do this procedure on MSK patients. I also read somewhere that multiple lithotripsy can cause agrevation in people with MSK and I have had numerous. I am willing to try most anything to improve my quality of living.
If you have any suggestions I would be so appreciative. Thank for your time in advance.
I feel the exact same way! I have had lithrotrypsy so many times and all it did was damage my kidneys and within the year they are back with avengance! in my opinion it is not worth it. The last time i had it done it caused such a blockage i was hospitlized for a week!
i diet low in oxalate foods helps and so does the med HCTZ (hydrochlorothiazide) lithrotrypsy dont help in our cases due to the once they are blown up we dont pass all of the small stones and they just settle in the bottom of the kidney see if your doc will do im not sure of the name of the surgery but they go in through the bladder up the into the kidney and remove the stones one by one i just had this surgery done so i will let you know how it goes in about six months but since i have started the meds and the diet i have not had a new stone grow in 6 weeks so there is some relief
Thank you so much for this page! I can finally pull out something written by a doctor the next time an er doctor says “you only have stones in your kidneys. That doesn’t hurt ” I have ssuffered with MSK for four years. Two and a half of nonstop stones and surgeries .. I have had litho about every two.to.four months for the last two years… I am so happy to read this 🙂 thank you.
We’re glad we were able to help bring this information to light. Here’s a link to the abstract of the paper that we referenced in our post regarding the pain aspect of medullary sponge kidney.
I’m part of the Face Book group ,they have save my life ,i been living with chronic daily pain since 2006 where a 6 and a half mm stone came out of my left kidney and took from 4/2006 till 8/2006 to pass from that day on my life has been hell!! I vomit all the time i pass stones all the time ,i had surgery on 12/13/11 did not seem to help much at all !! i been ok now for 2 weeks after 20 days of antibiotics,pain under controll on pain meds,but just waiting for the bomb to go go off!! My new uro wants to help me and use the lazer on my left kidney had my right one done ,but it has been my right kidney for a year even after surgery,I have a truck load of rocks waiting to pass in my left side ,but after the worst infection i ever had, I going to wait it out till i can not take the pain anymore!! Thank You so much for your web site, please pass it on to geisinger med center in Danville, PA I have a great new young uro there willing and able to learn and help other people like me,make sure you also send it to nephro dept, too my DR there told me more less im nuts and should not have pain,and also said i drink to much water ,hummm cut me a break !!! Thanks again !!i also have a youtube with pics of my kidneys they are filled with 1000’s of stones:(
How far is Danville Pa. From Pgh. Pa. My wife has MSK and can’t find a good pain management dr that takes her seriously.
Thanks, concerned husband
I have msk at 28 years old but i also have scoliosis, kyphosis and degenerative disk disease and arthritis. I gave been on the usuak meds for msk and ultram and hydrocodine.can t,msk and the excess water cause me to metabolize my pain meds quicker?
Thanks for helping all of us suffering from MSK it is encouraging for us as we have been so frustrated. Having our concerns validated by actual studies completed is instrumental for us. Perhaps now we will be heard and steps will be taking to help elivate some of the the effects of this debilitating chronic illness. Thanks do much for everything!
I am so happy to see this as well as the others on here, although we all support each other on Facebook, this has got to be some of the best stuff we have seen by a physician. I was diagnosed a little over a year ago with MSK with nephrocalcinosis, and although I have not passed a stone yet I have been in immense pain daily since I was first diagnosed. I did read where it is non hereditary but is this still something that you are born with? When I was born I was thoroughly checked from head to toe inside and out because I was not breathing when I was pushed out, and I had no signs of this what so ever. I would really like to know because I was forced out of the military with no benefits from the Department of Defense because they classified it as something that occurred before I joined. And if this is possible to just get then I think someone owes me some money for kicking me out…
Although MSK is not thought to be genetically passed on, it is something researchers think you are born with – not something that you acquire.
I’ve been passing on to our FaceBook group the changes I’ve seen you make in this page and they have been so so pleased.
“In some patients however, the non-obstructing stones seen in MSK can be associated with significant and chronic pain, even if they are not passing. The pain in this situation can be constant in nature, unlike the episodic pain traditionally seen with kidney stones. It is not certain what causes this pain but authors have proposed that the small numerous stones seen in MSK may cause obstruction of the small tubules and collecting ducts in the kidney, leading to the pain. This pain can be debilitating and treatment is challenging. Narcotic medication, even with large quantities, is often not adequate. Some success with pain control for MSK patients with this type of pain has been reported using laser lithotripsy (see below).”
After reading the above paragraph that you added, one of our members posted: “THIS PARAGRAPH IS THE BEST THING I’VE EVER READ!!!” It’s hard to express how meaningful it is to be listened to. Thank you, again.
Paige
Paige,
Thank you for the kind comments and for letting your group know about our post on MSK.
We can only really take partial credit as the section on pain and laser papillotomy in the post was based on Gdor’s paper where the authors extensively discussed this issue. Credit mainly goes to them as they were the ones who conducted the research on surgery to help relieve pain in patients with non-obstructing stones. Here is the full reference to the paper and the institutions where the authors hailed from:
Multi-Institutional Assessment of Ureteroscopic Laser Papillotomy for Chronic Flank Pain Associated With Papillary Calcifications
Yehoshua Gdor (a)
Stephen Faddegon (b)
Amy E. Krambeck (c)
William W. Roberts (a)
Gary J. Faerber (a)
Joel M.H. Teichman (b)
James E. Lingeman (c)
J. Stuart Wolf Jr. (a)
a Department of Urology, University of Michigan, Ann Arbor, Michigan
b Department of Urologic Sciences, University of British Columbia, Vancouver, British Columbia, Canada
c Methodist Hospital, Indianapolis, Indiana
Dr. Wolf at U of M is the Dr. that performed the laser papillotomy on me. He is listed in the above references. He has been very helpful as well as the nephrology clinic at U of M.
There are NO words to express how happy I am to see this page. Your paragraph about chronic pain without an active stone or infection is spot-on and something that I’ve been waiting to hear from a physician for 8 years since I was diagnosed at age 16 with MSK after multiple trips to the hospital with stones and kidney infections. I had a ureteroscopy pappilotomy with holmium laser and stents in 2009 with Dr. Monga at the U of MN which gave me the best 2 years so far. Sadly my stones formed again and I’ve been in extreme pain with a UTI or kidney infection monthly for about a year now even though I am on daily nitrofurantin. Going to the ER is about as fun as pulling out my teeth one by one since they don’t understand how painful it really is when the literature says that its benign and that we shouldn’t have pain without an active stone. I also rarely have a fever or blood in my urine, but I do have a really high BP.
I started a facebook support group for people with MSK years ago, and it’s grown into a wonderful and loving family that truly cares for one another even though we’re miles apart. It makes us all feel less crazy when doctors say that we shouldn’t be feeling a certain way. More research needs to be done on MSK so that we don’t have to hide, feel shamed, or suffer anymore. Most of us our at our wit’s end with MSK and what it brings. I’m 24 and spend most of my life on my couch with my heating pad. I take vicodin or percocet almost every day to go to work and function. Hanging out with friends has become almost obsolete.
Thank you again, this is a wonderful and informative website that had me tearing up when I came across it. Please, let’s start some research as to WHY we’re in pain so that we can get our lives back!!!
Kayla
Fantastic new information you have updated with!!! Dr. Nguyen, you rock!!!! (Or whoever tracked the info down) And so quickly. Thank you for your dedication to this website. I’m so impressed at how quickly you researched and got some really accurate information in there. It will be such a blessing to other msk-ers who are just finding out that they are sick or looking for an explanation for their symptoms to actually have them accurately portrayed. Thank you from the bottom of my heart! And the bottom of my kidney. 🙂
Paige
There are MANY of us supporting each other on a closed facebook group..it helps keep me on the sane side of life having people in the same boat so please know there are more of us. Just incase someone comes up with some kind of wonderful treatment~
I too have chronic pain. I also suffer from daily nausea/vomiting. My life is so different than I thought it would be. I am told constantly that I should not hurt. I have had my gallbladder removed because the doctors believed that was were the pain was coming from. I still have the same pain I just no longer have a gallbladder. I have had infections since a child I remember getting antibiotic shots monthly as a preventative. I lived fine no pain when no infections for years, in 2008 that all changed. I passed my first stone and then what seemed to be a stone a month for a year after out of the right kidney. Had lipotripsy on the right stones left but the pain never did? Now I am passing the first stone from the left side and am in fear everyday that it to will hurt everyday. My left side doesn’t hurt except when im passing a stone I do not want to let them clean it out because I do not want it to hurt all the time too But now that it has decided to let them drop I guess i have no other option. MSK has affected my life physically, emotional, mentally and it has also affected my children and husband because they watch me suffer as doctors tell us I shouldnt be. I am ever so grateful to the ones before me that have done so much work to get the awareness out for this disease. This is just the beginning. I often do not say much about this because it alway brings tears and sadness but I know I have to do my part sso that things may change!
I was diagnosed 10 years ago when i was 36. I had a 9mm stone lithro and i seemed to never recover. A year after i was diagnosed with MSK. and my life since the first stone has changed dramatically. I used to be very active, now i miss out on alot of things due to the pain i have just about every day. I am really hoping that we make some progress in this area because I HAVE A LIFE i want to get back to or at least have more pain free days. More people need to know about msk, it’s supposed to be rare but i belong to a closed facebook support gr with about 200 other people who suffer daily and are being treated like they are drug addicts. It’s terrible to suffer like this and be treated like you are just looking for drugs. Dr. need to realize how extrememly painful it is to live with chronic kidney stones. Thanks for the opportunity to speak out!
I’m glad to see this website trying to shed some light on MSK. Pregnancy with MSK is poorly understood and I had 3 complicated pregnancies. My first pregnancy was complicated by Preeclampsia, the second with severe post partum Preeclampsia, and the third with PIH and Placental Abruption. I’m very thankful to be alive and have my 3 children. I have suffered with UTIs since I was an infant and at 24 years old, am allergic to several antibiotics. I also experience painful urination at times, though I test negative for infection. I too experience sharp pains and dull aches. There is many MSK sufferers out there who suffer extreme daily pain. I don’t believe MSK is the benign condition that it’s said to be. I hope in the future there will be more knowledge on this disease, I really fear what my future looks like.
I have had the same issues as you kimberlee! Im so relevied to hear im not the only one with MSK that had complicated pregnancies. I had preeclampsia with my first daughter and with my 2nd daughter I had my plecenta come off early and my daughter was born at 26 weeks (she was in the nicu for 4 months) and after she was born I was finally diagnosed with MSK. I thought it was just me with all these problems and im only 23 years old. Im so greatful for this page to know im not alone! 🙂
I am a 37 year old mother of 3, and I was diagnosed with Medullary Sponge Kidney (MSK) in 2008 at the age of 33, after a severe bout of kidney stones. Prior to my diagnosis I had 2 kidney stones, one that was the size of a quarter when I was 13, and one when I was pregnant with my third child at age 31. In between these times I battled repeated UTIs, kidney, and bladder infections.
My most recent occurrence of stones came in June 2011 at age 36, and it is now May 2012 and I am still trying to recover. I had bilateral stents for almost 7 months and have had 6 infections in this time. My kidney function fluctuates, and I was in Stage 2 of Chronic Kidney Disease (CKD) until recently. My story is not unique however, this is what many people who have been diagnosed with MSK deal with to some degree or another.
As if coping with repeated bouts of infections and multiple surgeries aren’t enough, we as MSK patients must also deal with doctors that do not understand the complexities of MSK, and are not fully equipped to treat it effectively.
This is why I have made it my mission to advocate for MSK patients worldwide. There needs to be a major shift in the way MSK patients are treated, and new research and treatment options need to be implemented. There are so many out there that suffer with debilitating pain because of MSK, myself included, yet their cries fall on deaf ears because nobody will take the time to listen to those patients and try to make a difference in their care. Until the research is updated to reflect correct information, patients are going to continue to suffer needlessly. I’m not sure what your website restrictions are (if any), but I have an online petition going to try to raise awareness about MSK and the daily struggle that MSK patients are living with. This petition also lists the things I’ve already done to help raise awareness. http://www.ipetitions.com/petition/medullary-sponge-kidney-msk-patients-unite-one/
I appreciate your willingness to educate people about MSK, but as Paige and Pauline both stated, the information that’s currently out there for those of us that DO have complications is not accurate. Doesn’t it make sense to get the real truth about the symptoms from the actual patients that have to live with this disease the rest of their lives? Please help us change the current status quo when treating MSK – it isn’t working.
Thank you,
Mary Maston
MSK Advocate; USF Tampa Project Facilitator
I am similar to Pauline in that I have msk and deal with pain. Everyday. It is frustrating as an msk sufferer to read your “What type of problems can medullary sponge kidney cause” section above and find nowhere mentioned that some of us are in pain. It seems that there are not many people who suffer from msk and of those that do, few of us experience the chronic pain that I’m referring to, but we need to be acknowledged. Under the procedures that can be done for msk, ureterscopic laser papillotomy is not mentioned. It should be. It is a procedure being done by multiple urologists to successfully treat some msk-ers who are in chronic pain.
If more is not discussed about this disease and how it can affect some people, we will continue to be told by urologists and nephrologists that it is not painful. That , yes, there are multiple stones in your kidneys but they should not hurt unless they are moving. We’ll continue to be told that there are no nerves in the kidneys and we shouldn’t be in pain. If more is not discussed about how this disease affects some people, good websites like this one will reflect outdated, bad information. The lack of information about those of us who are in chronic pain from msk makes this site unhelpful in that regard. There’s plenty of literature out there supporting this aspect of this disease. I hope that more will be added by the creators of this site so that it will be as accurate as possible and more helpful. We’re out here, we’re really in pain and our lives are often revolving around that pain. It is often not being treated as legitimate and this is wrong. My frustration is probably coming through and I don’t mean to sound hostile, but I’m tired of the misinformation and missing information.
Thank you for your comments. The purpose of this site is to provide, as best as we can, helpful information to stone formers but we may not always be as successful as we’d like.
Your feedback as someone with personal experience with MSK is valuable to the readers of this post and to us. We will be updating the post to include more information on pain related to MSK and the option of ureteroscopic papillotomy for non-obstructing stones. We previously made reference to that procedure in one of our older posts on kidney stone pain from last year and we agree with you that non-obstructing stones can indeed cause pain.
I really appreciate your reply to my post. I even more appreciate your willingness to update your already informative site. So helpful. Another aspect of that is not well understood when it comes to pain with msk is not only the stones (“free floating” and possibly non-obstructing) but the nephrocalcinosis: “Nephrocalcinosis has a significant overlap with hypercalcemia, nephrolithiasis, renal parenchymal damage, and reduced renal function. Therefore, rather being considered a single, distinct disease process, it should be viewed as a helpful finding for several distinct disease processes, demanding further evaluation.” from http://emedicine.medscape.com/article/243911-overview Nephrocal. can lead to calcium deposits lining the tubules of the kidney, these calcifications becoming thicker and causing even more blockage of stones that might move out. During the laser papillotomy some of these deposits can be lasered away, but much of it is there to stay in areas the laser cannot reach leading to areas of the kidney becoming “calcified”. Even common sense should tell you that this might be painful, but we are still told routinely that it cannot be and are dismissed.
As I said, I am so excited that you are willing to look into this much ignored but very debilitating aspect of this disease. I know that msk is not bothersome or even diagnosed in so many people and it causes them no problems whatsoever. But for those of us that are affected, we deserve better treatment and more information easily accessible. Thank you for your part in this goal that we both share.
Paige
I have suffered with Medullary Sponge Kidneys for 20 years. It has progressively gotten worse over the last few years. I have passed tons of stones and many different types. I struggle with fatigue and nausea along with the terrible UTIs I have constantly. I have had multiple lithotripsy procedures and stents over the years. The problem that I face and many others like myself, is not being treated for the severe daily pain we encounter. Passing stones is excrutiating and many people like myself are unable to be treated for our pain. Many of us are frustrated by the lack of knowledge of how Medullary Sponge Kidney patients should be treated. We would like to see this condtion taken much more seriously then it is at present.
This chronic illness is extremely debilatating for many of us and we suffer physically and unfortunately emotionally because the lack of knowledge and understanding we receive from the medical community in both Canada and the United States.