medullary sponge kidneys

[HLF]

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 ***@****

[ChitChatNIne]

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

[MSKshelly]

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

[MSKshelly]

                       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