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Medullary Sponge Kidney Disease (MSK) Community
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kidney pain

im so sorry to possibly waste time here, but could some one please spare a moment to help. I had a bladder lift operation approx one year ago, during the surgery my left kidney was accidently knocked causing it to shut down.  After x3 stents and 9 months in hospital it is now working.  My problem is the pain im having in the kidney, which at times can reduce me to a mumbling wreck, i have been back to urology where i had the operation and gone through all the usual... wonderful... tests, to be told the kidney looks fine, and is working. When ever i ask about the pain i still experience im met with utter avoidance of my question. I have noticed certain foods and drink make the pain worse so try to avoid these.  I put this post on another web site and was answered by a lovely person who directed me to ...msk...  boy now im confused!!!  
never heard of this msk before, but from what ive read none of my family have had kidney probs.  Yes ive always sufferes from uti, but this pain didnt just crop up, it was caused by an accidental knock during surgery, would this matter to a diagnosis of msk..  just would like to know what to expect, how to control it and will it go away, have even thought of kidney scarring due to the stents....  aarrgghhhhh!!!!!!  could someone please help me, i really am at the end of the road here....
many thanks for your time...
3 Responses
168348 tn?1379360675
COMMUNITY LEADER
Hello and welcome.  What comes to mind about your MSK ?'s first-off is that MSK is not necessarily genetic but they think it does tend to run in families.  The gold standard to diagnose MSK is with an IVP Xray with Contrast .. they take pics ev. few mins as the contrast runs thru your system.  MSK has the tubulars which flare and thus creates problems with stones and other symptoms.  Some are 100% asymptomatic with MSK and that's why the #'s aren't true indicators of who really has it .. if you don't have symptoms its likely you'll never know you have it.

One thing that comes to mind is the nerve endings in the kidneys since the accidental knick.

Maybe research RSD - Reflex Sympathetic Dystrophy.  It's a longshot but the nerve pain can be relentless and soemthing to throw into your mix of research, etc. as you try to figure this out.

So glad you found us .. I'm sure others will have some input too.

regards,

C~
489228 tn?1291535054
Sorry you felt your wasting your time here.  I know when your hurting you can feel alone and frustrated when no one answers.  Please know this board is full of patients
just like you who live with the pain etc.  However most of them for the more technical
aspects of this count on me to get the info out, since that research has been my passion.  So please don't judge the community by not hearing the first day, this is an great place and if your read through the other post and health pages at the top right side of this forum you will find many answers already too, as well as see how far from
alone you are!

I can only go in here at night and we have dial-up.  I checked the site last night but the boards were down for something they were working on.  I answered you other post as soon as I got in here and saw it.  I too am a patient with multiple issues, I was on the phone last night for sometime with another MSKer who had waited some time for a night when I could discuss the procedure MSK /pain etc.  I also had another new patient that I needed to send articles too.  With dial-up this literally takes me hours sometimes and I did not go to bed last night till 2am.  Again, I apologize that you
are hurting and did not get an immediate response.   Below is copy of the links
I sent in your other post on MSK and pain.  If you can pm your e-mail address I will
send you the pdf of the procedure etc.  

Be patient with me though, we run a home business, are raising kids and I am chronically ill.  It may take a day or two but I will get it out there.  I do not make any profit for the work and time I send helping others, other then the greatest reward of seeing people know they are not alone and have hope again!

This board is made up of people just like you.  We don't have a medical doctor to sponsors us... though we would like one????  So this forum is just patients helping patients to find answers and hope.  I hope you will become an active part of our board
and help us to insure that no newbie is left unanswered for very long!  Cheryl also tries to jump in and at least say hi etc. as do a few others.. summer is a crazy busy time for people though.

I hope you find some answers in the links below
Shelly

Here is the direct link to that article;
http://moarkic.com/content/view/68/56/

Here is the links to a health pages I put together on the chronic pain etc. on Medhelp

http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185


http://www.medhelp.org/posts/show/565929



Here is the link to all the health pages on the medhelp site worth checking out there is some really good stuff:




http://www.medhelp.org/health_pages/list?cid=185





http://www.emedicine.com/radio/topic433.htm

Here is the link to my favorite e-medicine article:  The reason being read below: (How ever on checking to make sure I had the right one
I was surprised to find it edited, with separated sections:  This is the lionk that states the remark below but I would encourage you to also
read the other links at the bottom of the section.)




http://emedicine.medscape.com/article/242886-followup
Prognosis

Usually MSK is a benign disorder without any serious morbidity or mortality. However, renal insufficiency may occur in as many as 10% of patients with MSK.

Occasionally, patients can have recurrent nephrolithiasis, which can lead to significant morbidity.

If any suggestion of history of MSK in other family members exists, further investigations may be indicated to unravel the genetic pattern of transmission.

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. These patients may be treated best by physicians comfortable with chronic pain management.


I truly hope this helps you!

Shelly



489228 tn?1291535054
OK now having looked a little more through you story,. etc.
I would have to ask several questions.
1. Do you have calcifications in the kidneys?

2.  If so where?
. With all those stents it is VERY likely you have a chronic low level biofilm infection
in your kidneys MSK or not.  Have your tried any natural antibiotics, garlic
oregano etc.  D-mannose?  I also take Silverbiotics it is great.

3.  Have they tried antibiotics and does the pain improve while your on them?

Shellt

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