6 Things I Wish I’d Known When I Was Diagnosed With Medullary Sponge Kidney

Medullary sponge kidney (MSK) is a congenital disorder, meaning it is present from birth. MSK is characterized by cystic malformations in the kidneys and can present with symptoms such as chronic kidney stones, renal colic and recurrent kidney and urinary tract infections. It is also referred to as Cacchi Ricci disease. An usual hallmark in some patients with this disease is the presence of “kidney gravel” which are small, sand like stones which are thought to occur because the nephrons in MSK patient’s kidneys did not form properly and therefore create the sand like stones in an effort to filter the body’s waste, but there is little research on the exact mechanisms of this disease to confirm or deny that theory.

Here are six things I wish I’d known when I was diagnosed with MSK.

1. Your pain is real.

In my experience, many urologists have never even heard of medullary sponge kidney, and the ones who have heard of it have been taught it is a benign condition. Upon my diagnosis and discovering others who have MSK as well, I discovered that most of us struggle with renal colic, kidney pain and spasms and have frequent infections and kidney stones.

If you are doubting yourself, please know that your pain with MSK is real and validated. This disease is rare and unknown, but that does not mean that you don’t deserve understanding and proper medical care to manage this difficult condition. It is important to find a physician and care team that can help you properly handle the challenges that come with life with MSK. Don’t hesitate to “fire” a doctor who is discrediting your symptoms and not improving your quality of life.

2. Stents can be necessary evils.

Kidney stents are a common part of managing medullary sponge kidney. They are not fun, but for me, they’ve been a life-saving intervention when stones cause kidney obstructions. Typically urological surgeons will use “J stents” and these are placed in your body during a surgical procedure.

They put them in your kidneys under anesthesia, but they take them out in the doctor’s office. This sounds absolutely terrible and like it’ll be a torture session, but it is not as bad as it sounds. It takes like 30 seconds and then it’s over.

It is recommended you take your prescribed urinary anti-spasmodic medications before your stent removal to lessen the chance of renal colic after stent removal. The doctor will typically give you a dose of antibiotic as well to prevent infection from stent removal.

3. The emergency room may not differentiate you from another average stone former.

Kidney stones are one of the many reasons people visit the ER. In non-MSK patients, typically this is a random occurrence and they are prescribed pain meds, told to up their fluid intake and pass the stone at home.

Most MSK patients pass stones frequently. Some, arguably most people with MSK, require surgical intervention with stones at some point in their disease management course because other complications such as nephrocalcinosis, tubule plugging and renal duct blockages may be present.

(More information can be found at this study link.)

When you visit the ER, understand that they are most likely going to treat based on their experience and may not fully understand what MSK is.

You need an educated nephrologist or urologist who can closely follow your care. Medullary sponge kidney care is much more involved than to average, occasional kidney stone occurrence.

Always head to your ER if you are feeling unbearable pain, have a high fever or cannot stop vomiting. Sepsis and renal obstruction are real threats to MSK patients and must be treated effectively in a timely manner.

4. Antibiotics may be a big part of your life.

Frequent stone passage can create a “sandpaper” effect in your ureters and bladder, predisposing you to urinary tract infection. Antibiotics can be life savers for MSK patients, so don’t be surprised if you find yourself on them multiple times a year.

It is important to get urinalysis testing for possible infection and to get a culture of the bacteria causing the infection to ensure the right antibiotic is prescribed to treat the infection.

It is also recommend to take a good probiotic your doctor approves of to help keep the good bacteria in your microbiome of your gut at proper levels and to prevent additional issues such as C-diff.

5. Get your stones analyzed.

Researchers have reported that 12 to 20 percent of people who develop calcium-based kidney stones have medullary sponge kidney. Calcium phosphate and calcium oxalate stones are common on MSK patients.

There are many types of kidney stones and determining what specific kind your body makes may give you an insight into how to better manage them.

There are also diagnostic tests such as the 24 hour urine panel that can help physicians determine the underlying causes of kidney stone formation in order to possibly prevent future stones from occurring.

Since MSK is caused by a physical malformation, complete remission of stone forming may not be possible, however, it is possible to lessen the size and prevalence of stones.

6. Diet does make a difference.

Tracking what foods may trigger or worsen your MSK symptoms is a vital part to finding quality of life with this disease. Some MSK patients find that high oxalate, acidic foods such as tomato sauce or food additives such as citric acid exacerbate symptoms. Everyone is different and keeping a health log journal may help you discern what foods and drinks may be hurting your health.

You can also reach out to a renal dietician to help you form a diet plan that works for your lifestyle.

Life with MSK can be a major challenge, but don’t lose hope that you can still live an amazing life despite this disease.

For more information on how to mange MSK, you can check out my book “Chronically Stoned: Guide to winning the battle against kidney stones” or visit my educational website Manage MSK