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Category Archives: Medullary Sponge Kidney
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 →
I have medullary sponge kidneys. Two big surgeries, cystoscopes, lithotripsies. I have pain when the stones are in the kidneys, none in ureter or urethras. Thanks.
Medullary Sponge Kidney can be associated with a deficiency of citrate production by the kidney. You should be evaluated by a nephrologist and have 24 hour urine testing to see if there are possible treatments for your kidney stone disease. … Continue reading →
My daughter has Beckwith Wiedemann Syndrome, and was recently diagnosed with medullary sponge kidney. Her symptoms, frequent UTIs, blood clots in the urine, extreme back pain, and numerous kidney stones became worse after she became pregnant and after the birth of her child. Is there any information available about risks to her health associated with another pregnancy?
I am not familiar with the manifestations of Beckwith-Wiedemann syndrome and have no experience with this genetic disorder. I am unaware of any information about pregnancy and this disease. Medullary sponge kidney is a relatively common disorder that can be … Continue reading →
Dear Dr. Spry, My cousin brother has been diagnosed with MSK in China. After the doctor did surgery of kidney stone removal, they said his kidney is not able to work again. His creatinine has risen up to 2000+, and now he is under Hemodialysis treatment. I want to know if there is any advance treatment can help this situation. The kidney failure started last week. In China, the doctor says the process is irreversible and he has to live his life with Hemodialysis or perform kidney transplant. It is so sad and my cousin brother is only 29 years old. Thank you for all your help.
Medullary Sponge Kidney (MSK) can cause kidney failure but it is unusual. I am not able to make a specific diagnosis with the information that you provide. I am unsure if this is permanent kidney failure or acute kidney injury. … Continue reading →
In September 2008, I was diagnosed with nephrocalsonsis and MSK bilaterally. I have had 15 lithotripsy 10 stents and constant UTIs. I currently have an 8x4mm 4mm 3mm and 2mm stones in my left kidney. Have been to several doctors and nobody seems to find the cause or help slow down the processing of the stones. I have all normal labs nothing that shows any sign of a cause. Any help or suggestions, where I should research would be great.
Medullary Sponge Kidney (MSK) and nephrocalcinosis are diseases of the kidney associated with kidney stones. This is likely the cause of your recurrent kidney stones. The best resource for MSK is at the National Institutes of Health at: https://www.niddk.nih.gov/health-information/kidney-disease/children/medullary-sponge-kidney We … Continue reading →