Medullary Sponge Kidney Disease (MSK) Community
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medullary sponge kidneys

WHY DOE'S IT HURT SO BAD AND I HAVE TROUBLE SLEEPING AND MY KIDNEY'S ALWAYS HURT WELL WHEN I WENT TO THE ER THEY TOLD ME THAT SENCE THEY TOOK AN EXRAY 7 MONTHS AGO THE WERE NOT GOING TO DO ANOTHER ONE SO WHAT SHOULD I DO FOR THIS SEVERE PAIN ? thank u heidi ***@****
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168348_tn?1379360675
WELCOME to the Community!  Did you have any stones then?  Unfortunately, the ER can be ruthless when it comes to MSK and the pain we oftentimes endure.

Cheryl
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Unfortunately doctors believe wrongly that if you don't have a stone in the ureter you can have pain...."Your kidneys don't hurt!"!

Which is completely wrong!  Many of us have this unexplainable pain....my doctor and I believe it is connected to a biofilm infection that actually set up with in the calcifications!  Because the bacteria are basically encased with the stones in the biofilm material they are unpenetrateable by antibiotics and almost impossible to culture out!
I have a research article I put together on it and I will try to post it too... I know I have a word limit on this post!

*http://www.emedicine.com/med/topic1413.htm* This is a good article:in it it states that MSK can have the chronic unexplainable pain etc.  

I just recently found this articlebelow!  I am to have the surgery done on Aug. 4th for chronic kidney pain with no stones in the ureter!  Afterward I will post more info. on the procedure and how it works to solve this!

Shelly

Urology. 2006 Apr;67(4):683-7. Epub 2006 Mar 29. Links
Ureteroscopic laser papillotomy to treat papillary calcifications associated with chronic flank pain.
Taub DA, Suh RS, Faerber GJ, Wolf JS Jr.
Department of Urology, University of Michigan, Ann Arbor, Michigan 48109-0330, USA.

OBJECTIVES: To evaluate retrospectively the efficacy and durability of a novel approach using ureteroscopic laser papillotomy for the treatment of painful papillary calcifications. Chronic pain due to renal papillary calcifications has not been addressed by current techniques. METHODS: Ureteroscopic holmium laser lithotripsy and papillotomy were performed on patients with chronic pain and radiographically visible papillary calcifications without free collecting system calculi. The papillary urothelium overlying all cystic dilations and intraductal calcifications was vaporized. Treated patients answered a telephone survey to assess pain scores, duration of response, use of narcotics, and patient satisfaction. We reviewed the medical records to evaluate for procedure-related complications and serum creatinine measurements. RESULTS: Of 20 patients who underwent laser papillotomy and responded to the telephone survey, 7 had bilateral procedures, yielding 27 renal units available for analysis. "Much less pain" was reported after 85% of the procedures, with a durable improvement reported after 59% of the procedures, at a median follow-up of 14.5 months. Significant improvements in the median pain scores were seen at 1 month (1.0, P <0.001), 6 months (2.0, P <0.001), and 1 year (1.5, P <0.001) compared with a median preoperative pain score of 9.0. The mean serum creatinine was unchanged after the procedure. CONCLUSIONS: Ureteroscopic laser papillotomy appears to be an effective treatment option for the chronic pain associated with papillary calcifications. Laser papillotomy offers hope to patients who would otherwise have been denied an attempt at treatment because of a lack of free calculi within the collecting system.

PMID: 16566982 [PubMed - indexed for MEDLINE]


Related Articles
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                       Chronic Pain in the Medullary Sponge Kidney (MSK) Patient                  
                                                                                 by Shelly Matthewson
                                                                                                 Private Researcher
                                                                                           IC Support Group Leader
                                                                                                 MSK Patient
                                                                                                 Oct./2007

MSK is often stated as a benign disease.  The overall population that has problems is about 10% of MSK patients.  Given this low amount number, the problems encountered by the suffering minority are often left with little help for living with this, at times, debilitating disease.  According the e-medicine article, Medullary Sponge Kidney, Oct.6, 2006, ( by Amit K. Gosh MD, DM, FACP, FASN,  Associate Professor, Department of Internal Medicine, General Internal Medicine Research Fellowship, Mayo Clinic College Of medicine),  UTI’s are common in MSK.  He later states in the article the importance of treating all infections aggressively until the urine is clear.  Later in this article is a very important statement, “Some physicians may encounter patients with MSK who claim severe, chronic renal pain without any manifestation of infection, stones or obstruction.  The source of this pain is unclear.”
     It is this last statement, along with my own suffering from chronic un-explainable kidney pain, that has led my doctor and me to spend a great deal of time and energy researching our options. We noticed that my symptoms greatly improved when left on long term antibiotics.  In the end, after many research projects, including experimentation with various culturing methods, talking to many prominent biofilm researchers, and my physician’s own experience, that has led us to a probable cause for at least a large part of the constant pain issues.  We believe that biofilm infection has actually set up within the calcium in the kidney stones and nephrocalcinosis.  My own case is a little more dramatic, since a botched stone surgery at another location, caused me to scoped with un-sterile instruments, and therefore introducing some very resistant noscomial infectious agents into my body.  Many of these agents are known to be formers of biofilm infections.  My doctor has also seen a number of prostatitis patients with calcification in the prostate gland.  In these patients it is very difficult if not impossible to completely clear up infection without first cleaning out all of the calcifications.  In the MSK kidneys, this is not an option, since most of the stones etc. are deep in the medulla.  Recognizing that biofilms will attach to about anything it is very likely that this is happening to other MSK patients as well.  
         Biofilm infections are the medical challenge of our modern age.   “Biofilms and their inherent resistance to antimicrobial agents are the root of many persistent and chronic bacterial infections.”1  “Biofilms might be responsible for 65% of all bacterial infections.”2    According to “Topics in Advancement of Practice Nursing”, eJournal. 2005. @2005 Medscape, “Microbial biofilms which often are formed by antimicrobial-resistant organisms, ARE responsible for 65% of infections treated in the developed world.”  
Treatment failures of these chronic infections are often seen by patterns of infection suppression followed by a reoccurrence.   “What is common to all these [biofilm infections] is that you can’t easily get rid of the bacteria once they enter the body,” says Michael Givskov of the Technical University of Denmark in Lyngby. “Biofilms are complex communities of bacteria that have adhered to, colonized and formed micro-ecosystems with many other microorganisms on various surfaces.”3

“Biofilms may form on almost any surface including: plant roots, within humans and animals, and moist, inorganic surfaces. ”Treating these biofilm infections and preventing them from occurring is a major on-going battle, especially since many of these organisms develop multi-drug resistance to antimicrobial therapies.  “Many bacteria species that produce chronic infections, (such as Pseuodmonas aeriginosa, Staphylycoccus  aureus, S. epidermidis, and E. Coli) also produce acute invasive infections.”4   It now appears that “inside a host, biofilm forming subpopulations may be induced by stress from immune responses. This could mediate transition from acute to chronic infections.”4  Therefore, early detection of bacteria and proper treatment of acute infections is a crucial strategy to treatment.  Infections not treat aggressively enough are at the greatest risk of developing resistance, and even forming biofilm infections, since the greater the age of the biofilm the more difficult it is to treat,  
    Biofilms can multiply quickly, building a complex multi-bacteria fortified community within a confined matrix.  Within these communities the bacteria are protected from the host immune system and antimicrobial agents. Even acute infections do not always show on routine urine test strips, or even on cultures, Testing for biofilm infections is a challenge. Since only a small percentage of the bacteria slough off and are present in the urine etc., the bacteria usually do not present in sufficient numbers to be isolated and identified by the traditional ”colony count” agar plate culturing.  This makes if very difficult for both the physician and the suffering patients.
     Many MSK patients however feel sure they have infection even when the standard testing procedures show otherwise.  They also find a relief in both the chronic unexplained pain and fatigue symptoms once placed on a prophylactic antibiotic.  Again standard testing is designed for colony count and your typical acute infection  does not find these low-level bacteria.   Unfortunately, at this point, antibiotics simply control the symptoms, and the bacteria, which are sloughing off, but for a patient in pain this is significant.  Treatment for resolution of the biofilm infection, is still in the experimental stages but this year scientists, lead by Dr. J. William Costerton, have found ways to disturb communication within the biofilm communities.  So we are hopeful for the future.  In the meantime, MSK patients that are suffering with constant unexplained pain need to be treated compassionately and kept as comfortable as possible.












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References
1“Bacterial biofilms: A Common Cause of Persistent Infections.” Costerton, JW. Stewart PS, Greenburg EP. Science 1999 May 21; 284(5418):1318-22

2”A Dose-Response Study of Antibiotic Resistance in Pseudomonas aeruginosa Biofilms.”  Aleiai Brooun, Songhua Liu and Kim Lewis,  Antimicrobial Agents and Chemotherapy, Mar. 2000,p.640-646

Science News.org, biofilms
3 Light and Electronic Microscopic Examination of a Biofilm Visual: Image Publication Date: 4/29/2002 Authors Ralph Robinson University of California - Los Angeles Los Angeles, California 90095 USA Email: ***@****

4 “Bacterial Biofilms: An Emerging Link to Disease Pathogenesis” by MR Parsek, and Pradeep K. Singh, Annual Microbiology Review, 2003


Other resource:

“Catheter-Related Infections: It’s ALL About Biofilm” Marcia A. Ryder, PhD MS RN, Topics in Advance Practice Nursing e-Journals. 2005;5(3) @2005 Medscape

According the e-medicine, Medullary Sponge Kidney, Oct.6, 2006, ( by Amit K. Gosh MD, DM, FACP, FASN,  Associate Professor, Department of Internal Medicine, General Internal Medicine Research Fellowship, Mayo Clinic College Of medicine),

The IC Optomist, Summer 2007, “News You Can Use from AUA 2007”

Bacterial Biofilms: An Emerging Link  to Dsiease Pathogenesis, by Parsek and Singh,  Annu. Rev.  Microbaiul 2003,

“Rethinking UTI’s New Data may shape therapy, by Urology Times, Dec.1,2005

Biofilms…A Growing Problems, Seminar Transscript, by Dr. Bill Costerton, Sept. 21, 2000.

Biofilm Formation:  A Clinically Relevant Microbiological Process, by Rodney M. Donlan, Biofilm Laboratory, CDC in Atlanta, HEALTHCARE EPIDEMIOLOGY .CID 2001:33(15 October)

“Ultrastructructural microbiology of infected urinary stones.”by Nickel JC, Reid G, Bruce AW, Caosterton JW, Urology, 1986 Dec. 28 (6):512-5

Bacteriological study of renal calculi, by Macartney, AC, Clark J, Lewis HJ; Eur J Clin Microbial 1985 Dec.4(60:553-5

“Observations of the ultrastructure of infected kidney stones” Mclean RJ, Nikel JC, Beveridge TJ, Costerton JW University of Guelph, Ontario, Canada. j Med. Microbial, 1989 May: 29(1) 1-7








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Sorry if the amount of info. overwhelms!
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Actually, very helpful...thanks
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Hi I just recently came to check out this forum I am dealing with MSK and it's nice to see others sharing information it can certainly be quite depressing! I'm only 26 and have been dealing with it for 5 years which apparently is quite rare? My urologist told me that usually those cases that do show symptoms it only happens over 30 so I guess I'm just that lucky! LOL joking. It's really awful and can make you feel really alone and worrying about your kidneys failing from lithotripsy and stones so often is quite depressing.
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Hi, my name is Gayle and I have a 7yr old grandson who has grade 5 kidney reflux in both kidneys. I have yet hear that my daughter in law has finely found a specialist who has come up against anything this severe. He's always in extreme pain whenever he has to urinate, to the point that he often holds his pee and then ends up suffering with an infection. Can anyone out there help us. Thank-you so much.   Gayle  
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168348_tn?1379360675
This is an old thread -- hoping those who posted will get an email reminder that there's new activity and stop by to post an update re their Medullary Sponge Kidney (MSK) issues!

Here's a link to our health pages with great info:
http://www.medhelp.org/health_pages/list?cid=185

C~
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