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Category Archives: Medullary Sponge Kidney
I have Medullary Sponge Kidney. My urologist says I can take Aleve with a ureter stent. My GP says I shouldn’t take Aleve. What do I do, as the Tylenol does not work for discomfort and the Aleve does? Thanks.
I would tend to side with your Primary Care Physician (PCP) regarding the use of Aleve. The Aleve will decrease your kidney function. Make sure you drink plenty of water to flush the stone fragments out. The pain will likely … Continue reading →
My 32 year old stepdaughter has been told that she has medullary sponge kidneys. She’s been suffering from kidney stones and complications from surgery for about 2 years. It appears that MSK is not only quite rare, but often misdiagnosed. Can you tell me where the most knowledgeable and experienced doctors in the US can evaluate her and determine the best treatment plan?
The most comprehensive reference I have found for Medullary Sponge Kidney has been at the National Organization of Rare Diseases and you can access this site at: https://rarediseases.org/rare-diseases/medullary-sponge-kidney/ We also have a summary page on our web site at: https://www.kidney.org/atoz/content/medullary-sponge-kidney … Continue reading →
Hello. My wife has medullary sponge kidney (MSK) bilaterally and has produced kidney stones since age 11. The composition of the stones is variable. She passes many, but has had numerous lithotripsies over the years. At age 52, she is truly getting worn down by this process. We have had out of town nephrology consults with no success and have been told that there is no cure. Is there any new information out there for this combination of conditions? Thank you for your consideration!
Medullary Sponge Kidney (MSK) is a condition of the kidney that can be associated with kidney tubular problems including renal tubular acidosis, decreased urinary citrate and increased risk of stone disease. Your wife may need to consult with a stone … Continue reading →
Hi there. My question is about my Renal Tubular Acidosis. I’m the only person in my family with this particular kidney disease, but there is a history of kidney diseases in my family. How likely is someone else in my family to have one? Or in the chance I decide I want kids, how likely will my child be born with a kidney disease?
There are many different causes of renal tubular acidosis (RTA). There are every several different types of RTA such as Type 1, Type 2 and Type 4. Some of them can be hereditary and some of them not hereditary and … Continue reading →
Trying to find specialist in MSK in Maine. One who understands the pain that kidney stones cause. Both kidneys are affected and have continual back/kidney pain as result. Oral pain medication do little, lidocaine patch helps occasionally. Feeling unheard and frustrated. Any help would be appreciated.
Medullary sponge kidney (MSK) is a relatively rare kidney disease that typically results from small defects in the kidney tubules that cause calcium to be deposited in the kidney and the potential for kidney stones. The defect is often a lack … Continue reading →
Hi, I am 44 yrs old. I have had kidney issues since I was a kid. I had a urinary reflux problem that damaged my kidneys and a lot of UTI’s. Since I was 16, I started getting kidneys stones in my left kidney and now I get them in both and still get multiple UTI’s every year. I was told when I was younger that my left kidney was 30% functioning and the right was 80%. In saying that, my right kidney is hypertrophied and measuring 13.3 cm and is medullary sponge kidney. My left kidney has diffuse atrophy and measures 8.1 cm. Over the last 4 years I had more issues with the kidney stones mainly on the left side and each time they act up I seem to get very ill with an UTI infection and have elevated temperature despite the use of antibiotics. I always get told the same story by my urologist and nephrologist the “keep drinking more fluids and continue the low oxalate diet”. I am told they will pass on their own as they are all under 5 millimeters. Unfortunately, the only ones I seem to pass are slightly bigger than a grain of salt and I suffer for weeks to months before anything is done. My Creatinine is 75 umol/L and my GFR is 84 ml/min. What I’m wondering, is it worth considering a left nephrectomy in this case? The reason I ask is a nephrologist that I saw as a teenager had recommended that, once I was done having children. My current nephrologist stated it is such a major surgery and that wouldn’t be considered unless I get a lot of kidney stones and a lot of UTI’s; I guess he never really looked at my chart very well. I’ve only been seeing this doctor just over a year. At the beginning of the year out of 40 days that I was to work I was only able to work 15 days and I had the lithotripsy done in April and now again I’ve been off work for 2 1/2 weeks with UTI and multiple stones, 1 of which is 4 mm. I also have a large family history of kidney stones on my mom’s side out of 12 siblings and my grandparents 8 out of 14 have had stones. I look forward to hearing your thoughts.
I am a nephrologist and I have no surgical expertise. Hence, I am unable to comment on whether a left nephrectomy should be done. In patients with stone disease, removing one kidney is often associated with an increase in passage … Continue reading →
I’m a 41 year old female and I have a 16 year history of kidney stones after my daughters birth. I have had lithotripsy twice and have chronic left flank and lower back pain along with pelvic pain. Recently had a total hysterectomy due to ovarian cysts and fibroid tumors. I was hoping that my chronic pain would ease or even end after the surgery but it has been 8 months and no change. I saw a doctor 4 months ago who is a urogynecologist. He performed an ultrasound of both kidneys and took a urine sample. He referred me to a physical therapist to do pelvic floor therapy and said that should help and he could not find any other reason for my chronic pain. I recently obtained my medical records from his office and am concerned about some things. Under procedures it lists the renal ultrasound and states my right kidney has 4 stones and my left kidney has 4 stones. Largest measuring 4mm and smallest at 2mm. Then it says “Residual Urine: 309cc, Prevoid, emptied after scan. Bilateral echogenic pyramids, appearance of medullary sponge disease”. I’ve tried to research what this means and would really like a doctor to explain. Thanks in advance.
A medullary sponge kidney is a kidney disease whereby the collecting tubules of the kidney develop pockets along the tubules and this can result in calcium deposition in the inner most parts of the kidney. Patients with medullary sponge kidney … Continue reading →
I’ve been living with kidney stones since 2011 when I was told and only passed 2. Both got stuck in my urinary tract. My question is, can kidney stones cause CKD?
Yes. Repeated episodes of blockage from kidney stones may cause progressive kidney damage. In addition, diseases such as tophaceous gout with kidney stones, nephrocalcinosis, medually sponge disease and others can be associated with kidney stones and also cause progressive chronic … Continue reading →
My ultrasound showed “probable right kidney Nephrocalcinosis. Sponge kidney. Simple cyst noted. Is this a concern?
Yes. A sponge kidney with Nephrocalcinosis is prone to form kidney stones and can cause progressive kidney disease with time. You can learn more about sponge kidney at our web site: https://www.kidney.org/atoz/content/medullary-sponge-kidney The most comprehensive review of medullary sponge kidney … Continue reading →
Our daughter now aged 18 years was diagnosed with Bilateral Nephrocalcinosis in year 2010. Her Creatinine level was 1.7 in 2010. She had enlarged kidneys with calcium deposition. Her kidney function has since then gradually receded. Following are her test results in 2018: • Creatinine level has reached 4.3 • GFR around 15. • Hemoglobin keeps varying, now at 6.5. • Serum Iron is 21 µg/dl and saturation is 6% • PTH Intact is 415 pg/ml • Echo test and Liver Function Test are normal. For low hemoglobin she is taking Iron supplements and also IV Iron drips along with Darbepoetin injections sometimes. Calcium supplements and Sodamint (bicarbonate tablets) are being advised by doctors. She was under medication for High BP, but its now under control. She does not show any kind of symptoms like vomiting or swellings as asked by Doctors. Doctors are now asking us to be prepared for dialysis and kidney transplant in near future. We look forward to any feedback or information which can help us prevent dialysis and transplant by reducing her Creatinine level and improving her kidney function. Kindly revert with your positive feedback.
There is no known treatment for or any medication that will reverse kidney failure caused by nephrocalcinosis. In most cases, this is related to medullary sponge kidney disease. From your description, it sounds like your daughter is being properly treated. … Continue reading →