Coping with Cacchi Ricci – Medullary Sponge Kidney Survivor

Editors note: This is a guest post from a Medullary Sponge Kidney / Cacchi Ricci disease advocate and guest contributor, Shannon Bauer.  

The pain from a kidney stone is severe! Usually the pain starts when a stone moves into the narrow ureter causing a blockage, which makes pressure build up in the kidney.  The pressure activates nerve fibers that transmit pain signals to the brain.  Pain will come and go in waves as the ureters contract to push the kidney stone out.  Normally large stones are more painful than small ones, but the severity of pain does not necessarily relate to the size of the stone.

Even a tiny stone can be excruciating to pass as it moves or causes a blockage.  Once the stone passes or is removed the pain should go away.   This description may be accurate for a typical kidney stone patient but there are atypical cases that are characterized by chronic severe pain, whose features are unknown, in particular to the relationship with stone disease activity. These patients might be coping with Cacchi-Ricci disease also referred to as Medullary Sponge Kidney.

Medullary Sponge Kidney is when the medullary and papillary portions of the collecting ducts are dysplastic and dilate developing medullary nephrocalcinosis. It is often stated that most patients with medullary sponge kidney remain asymptomatic throughout life, with the diagnosis only made incidentally when the renal tract is imaged for other reasons. There was a recent study titled “Chronic pain in medullary sponge kidney: a rare and never described clinical presentation.” http://www.ncbi.nlm.nih.gov/pubmed/29468561/

This recent MSK study confirms that some patients do suffer with severe chronic pain along with what is considered a normal MSK patient who may present with complications including:

urinary tract infection

hematuria

urolithiasis/ureteric calculi

For those who are Medullary Sponge Kidney survivors it is crucial to know your team. Is your Urologist and Nephrologist knowledgeable about your condition? Have either specialists referred you to a Stone Prevention program or registered dietitian? What online groups or programs have you joined to stay informed about your kidney disease?

Coping with Cacchi Ricci was founded in the United States by Pharmacy Technician Shannon (Therrien) in 1997 when she was first diagnosed with Cacchi-Ricci Disease. It wasn’t until 2009 the name Cacchi Ricci was introduced on Facebook however in 2012 Eric Andre created Cacchi Ricci (MSK) in France. Eric created a CLOSED group Cacchi-Ricci, rein eponge, M.S.K. and Shannon joined forces with Eric to assist as Moderator. Together Shannon (Administrator) and Eric (Moderator) created “Coping with Cacchi Ricci” to help advocate and keep patients informed of recent studies and recent articles published along with supporting those with this rare kidney disease. In 2017 Shannon Bauer and Chenelle Taylor created “Kidney Stone Hall of Fame” which was inspired by Dr. Nguyen and his 2012 kick off of 13 Famous Kidney Stoners. Team Coping with Cacchi Ricci is continuing the mission Dr. Nguyen started by sharing celebrities kidney stones and now we welcome all patients kidney stones should they give us permission to display them. We now have 5 outstanding passionate advocates on Team Coping with Cacchi Ricci. Brittany Navarre has been a contributor for The Mighty and PARAthyroid Peeps. Cecilia Ziemer has been advocating and writing short blogs for various MSK groups for many years. Chenelle Taylor helps assist patients with resource information for those struggling to receive assistance for medical treatment. We also created Medullary Sponge Kidney – Coping with Cacchi Ricci Cannabis Guide in honor of Jerry Cepican who has featured articles on KidneyStoners.org

Please join:

Coping with Cacchi Ricci – Medullary Sponge Kidney Survivor http://www.facebook.com/copingwithcacchiricciofficial for current information about MSK

Kidney Stone Hall of Fame http://www.facebook.com/kidneystonehalloffame is now affiliated with KidneyStoners.org with permission from founder Dr. Nguyen

Cacchi-Ricci (France) https://m.facebook.com/groups/1379141182319029

Twitter- @copingwithCR

Instagram- copingwithcacchiricci

CopingWithCacchiRicci.Wordpress.com

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Ashley J

So I’ve been having pain in my right kidney for about three weeks now . Went to the doctor about a week later after my pain started . Felt like I was having back labor pains. And yes I have had children and know how that feels. After going to my doctor and telling her it was high up in my kidneys and felt like I needed a kub also a urine sample to be performed . Because I have had stones in past. Went to have those done , of course kub came back negitive, but my urine had blood in it. The Dr. gave me a steroid shot and a shot of toradol.So then the Dr. sends me for a CT scan . By this point I feel like theirs something wrong with my kidneys . And so I went back over to doctors office after the stat CT scan. The DR. came in the room and said well looks like you have MSK Bilateral punctuate calcifications. The doctor then told me I should be having any pain from such small stones . That I probably just pulled a muscle .But still my kidney hurt so bad. Then I started to notice spots of blood on my tissue when I wiped. Also went back to the doctor and they done another urine test. No infection or blood . But it was visible to me at that time. I don’t know why it wouldn’t show up ? I’ve been having to lay on my heat pad because it seems like that’s the only thing at times that feels like it helps some. No it doesn’t take away all the pain. I feel more hopeless now that I’m pretty sick and still don’t have any answers . My doctor has sent me for a litho link this week. I will soon have the answers on that test.

Hi Ashley I’m sorry you are experiencing these symptoms. Please know it’s not in your head and once you have your Litholink results you will have a clearer treatment plan in regards to kidney stone prevention. Did your urologist suggest surgery to see if this helps remove the chronic pain you described? What about your Litholink results do you have these yet? Sending healing vibes your way and gentle hugs. -Shannon