Medullary Sponge Kidney Disease (MSK) Community
Finally an answer for MSKer's
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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Finally an answer for MSKer's

I since it is late and I am still a little weak from the surgery and drive home I am going to copy and paste the post I made to the I am New thread here to make sure all take time to read it!  I had promised you all and update and we got back from my surgery on Thur. night!   I just want ou all to know there is hope for us!!

HI all I am just back from having a new surgery for MSK and chronic pain.   I am now 98% stone free and I have had no stent and very little pain or passing of stone fragments!  This is procedure is done by Dr. Wolf at the university of Michigan, it is called laser lithotripicy of papilary calcifications.  Using a holmium laser they put a small hole over each of my collecting ducts.  They blasted 9 out of 9 stone pockets in the right kidney and 9 out of 11 in the left, the 2 they left very mild and more risk to go after then to leave!  They also blasted my 2 largers stones in my left kidney.  I had NO STENT!  He said he ususally only does one kidney at a time, however we had no insurance so he did both.  He also warned us they usually when doing both he uses a stent however he was able to avoid if becuase there was not much bleeding.
I have had little to no pain on the left and the right only more instense then before surgery for the first day or two!.., Now my URO and I plan to really hit my chronic infection issues because the research shows that you can treat the infection untill the stones are gone!!!  Dr. Wolf did tell me he did this procedure twice before for the chronic infection without success so we know that the chronic infection also must be treated.  The surgery alone is not enough!  But I am 98% stone free... they left nothing larger then dust to pass, it has been amazing.  I have been told for years that there were no answers!  I am not thinking about getting my life back biking, kyacking etc.  instead of just surviving.  It has been less then a week after surgery and at this point I am still taking it careful, I do still have right kidney pain but a little less the before surgery and we know it takes time to heal!.., I will keep you all posted
on my progress but I we have been very impressed with the staff at Michigan Univeristy and I can not tell you how thankful I am to have found a doctor that believes in us and is helping many MSKers.  While there I learned he is also helping many with polycystic kidney disease too!  Please excuse my spelling it is 4 am got up to take my natural probioitcs and check on here... just wanted to give you all a quick update and assure there is hope!!

Shelly
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For those reading Shelly's post, please know I have known Shelly and her extensive MSK issues for many years and this posting has brought tears to my eyes.  There IS HOPE for those who suffer above and beyond "a few stones" ... however, we know that "a few stones" can be justifiably painful, those whose kidneys are packed with stones - until - now have had no hope for other than constant pain interfering with their quality of life rendering it a loss of quality.

However, through all this pain and infection, Shelly has somehow always been optimistic and has researched and contacted many top notch physcians trying to find answers, and this, I think is unbelievable and what the Internet and Communities like this are all about .. helping each other.

Shelly, my heart goes out to you as you cointue to heal and my heart is renewed for those seeking answers ............................

Cheryl (MSK w/stones but currently stone free)
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I am putting this in the Health Pages under Testimonials and Treatment (FAQ's) .. not sure of the categories.

C~
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My name is Amber I am a 23 year old mother of one. I have been having kidney issues since my pregancy back in 05'. With all the ct-scans, MRI's, X-Rays and about 25 surgeries i have had no one can figure out what is wrong with me. It wasn't until last winter that I read on my CT scan that the scan suggessts I have MSK in my left kidney. But weird thing is all my chronic severe pain is in my right side. I get admitted into a hospital about every 12 wks for chronic pain management. But weird this is also none of the doctors even mentioned this disease to me. I have had stents as well as a nephrostomy tube in my right kidney. the pain is unbearable. I been to doctor after doctor, specialist after specialist. So whoever has an information on this new procedure so i can see if my nephrologist here can perform the procedure for me. I am willing to try anything at this point in time*!!! My whole life is affected by this and everyone thinks i am crazi and that it is all in my head or i am a drug seeker. Everytime i go into the hospital i never have stones on my right side or a UTI i have stones present on my left, and the tiny 1mm-3mm stones i have had on my right side the doctors say are too small and should be causing me no pain since i dont have hydronephrosis at the time of admittance. I am beginning to think that my brain is messed up and taking the pain that is occurring on the left kidney and making my body think it is coming from the right side. if anyone has any information that can help me it would be greatly appreciated or a contact email or number for DR. Wolf @ univer of michigan*
My e-mail is AMBERDAWN_27***@****

I am so glad to know i am not alone!
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Hello and Welcome to our MSK community!

MSK is usually on both kidneys from what I think I recall.  The CT Scan can show it but an IVP with contrast X Ray procedure is the gold standard.   I can probably say that bout 95% of us on this community have been where you are now and we feel for you ... the stones are so small they shouldn't be hurting, yet they do indeed!   We can feel a 3.0 mm  or a 1.0mm one as it moves around inside the kidney!!!!  I had an C T Scan done for a 1.0mm that was hanging on for over a week really low in the urethra.  When it passed it had a "hook" on it like a fishook.

There is a great reference in our health pages about having pain yet no stone .. see the health pages on the upper right hand corner of the site!

WELCOME!!!

C~
MSK with calcium oxalate/phosphate stones
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Amber if you will send me your e-mail address in a private message
I can send you the info on this procedure.  We can not post person contact info
on the forum for our protection etc.  I do have to add here as an update, that I had this surgery last year.  It was my understanding from the paper as well as discussions from the doctor that this could and did make me stone free.  I am afraid though I misunderstood the procedure.  We I got home my uro agreed from the hospital report it appeared I was stone free, however he insisted on another KUB. I learned though it significantly reduced my stones, I still have quite a lot of them.  They can only reach the top of the pyramid as Dr. Wolf explained it to me.  That said it has helped my pain, infection and improved my kidney functions.  Though my function had been normal my creatine rate was just over normal and my GFR rating was getting low, both are much better now.  I will post some links to info on the pain issues and again
send me your e-mail address so I can send you the information on this procedure too!

Here is the direct link to an article I wrote in 07;
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



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Wow Shelly I cried when I read this. I have never heard of this procedure and I have been all over the world with my MSK. I saw Fred Coe in Chicago, Jim Lingeman In. Goldfarb & Grasso NY Bagley in Pa. NEVER NEVER knew of this way to clean out the Medullary, as a matter of fact they all said it can't be done.
Thank you for this new hope, as I am jam packed with stones in my Medullary.
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You do not mean a "Perc" correct? TY Cara
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Hi. It is def. possible to have MSK just in one Kidney and you are very fortunate it is just one. Most cases are bi-lateral but def. possible for just one kidney. TC Cara
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I just called Dr. Wolfs office. I explained to the nurse the procedure stated above, and that I did have an opportunity to fly out to James Lingeman after he reviewd my films. Lingeman is world reknown and only aceppts the worst of the worst cases, he is very selective
The nurse states that my Insurance may be a problem as I am not covered in Michigan. I am hoping that after the Doc. reviews my films we can do an ER thing. Just a way to get around the insurance if ya know what I mean. I will Fed-Ex today and keep all posted.  Cara  
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Just spoke with my Nephro. in NY. He states you can have this done there also. Good news for all to keep in mind. Dr. M Grasso does the procedure at St. Vincents. Good luck.....Cara
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I saw Fred Coe in Chicago, Jim Lingeman In. Goldfarb & Grasso NY Bagley in Pa.

I have never heard of either of these doctors either in all the research I have read on MSK.  Please send me some info on them and any links to articles they have written on MSK esp MSK and pain
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I did research into these doctors and though not considered MSK experts they are considered experts in stone disease, along with Dr. Margaret Pearl and others.  I did find
some interesting articles I am reading and reviewing so may add those links here soon
as well!

Shelly
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I think I would consider MSK =stone disease.. of course along with tublar defect. I do not have TRUE MSK it was imposed on me by many Lithos. & settled in court.
The above Docs. are TRULY world reknown and worth the money for ME to go to. I do have insurance, of course not covered in Chicago & Tx but worth every cent.
                                                             Best,
                                                               Cara
PS Lingeman is probably the best for Percs. I believe his infection rate is 0%, he has much research in MSK .TC
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Wrote long and important message and it deleted twice, ugh!  I would love any research and information esp. pdf articles you have by these men or any other for that matter.  It is really only through networking information we can find answers together. I provide to any who ask any articles and info that might help them with their doctors find the solutions that work for them!

It was through another patient we learned about the VitD deficiency and this has had a great impact on my personal health, as well as being a safe step to take first for anyone.  The key being to do so with your doctor since too high levels of Vit D can increase our stones. PLEASE PLEASE pm me or send me via e-mail any article or abstracts you have on research by the above doctors as well as
info on the risk of litho vs. Ureterscopic surgery.  What treatment options have these men offered you for the chronic pain issues or for the problems you are currently living with.  I would be very interested in any options that are legal and medically acceptable that out there to help patients.

That is what having this support network is all about. It is not about right or wrong but finding ways to help patients get their life back. It is hard to find doctors who are familiar with the MSK and pain issues.  Personally I find there are multiple issues that seem to contribute to our pain levels, it is only through networking these doctors in various areas of expertise we might be able to find solutions, help develop protocols and get enough attention to it to bring in the research $$ to find long term answers.

I do believe not having insurance has saved me many unnecessary surgeries and given over instrumentation will increase problems but only a patient with their doctor can know when their pain level or for me infection level is to the point intervention is needed.  For me the procedure Dr. Wolf did along with some strong antibiotics treatment and raising my Vit D levels has given me so much of my life back!!  I can only want that for each and every patient out there who is in pain, feels alone and can not find solutions.  However as I mentioned I believe the least invasive safest options need to be tried first and only the patient and their physician can know what treatment and medications are best for them.

I do believe that those of us with MSK and the most problems also have metabolic issues that contribute to the problem.  This make sense with kidneys that don't drain properly. These stone specialist have done a lot of research on meds to help us prevent stones for which I am so thankful.  Personally I told my docs for years that if I take ANY calcium I get huge stones.   It was not until I applied to be a part of a research study in TX under Dr. Margret Pearl, also a well known expert, that they found that I do not process calcium correctly.  however since I have a pseudomonas biofilm infection and one of the ways they find this in the lab is pseudomonas uses citrate, I ask if by taking the UROCIT-K,  I was actually feeding the bacteria since my infection symptoms increased when I started it.  Keep in mind that these doctors do not specialize in biofilm infections, actually doctors and researchers are just now beginning to understand and even accept biofims.  NO ONE HAD EVER ASK THIS ???.  I was refused for the study and told they could not recommend me taking the UROCIT-K!  Interestingly the  print out that comes with it also states not to take it during an infection.  This does not mean that this medicine is not a great help to others but it is not for me.

I have had several well known doctors who are biofilm infections speak directly with my doctor on my case and have given credibility to the fact that calcifications do harbor biofilms and in my case that is extreme with the botched surgery scoping me with unsterile instruments.  Dr. Wolf is also a well know and respected researcher,
though he specializes in stone disease and I was told is 3rd in the nation for using lasers, he admits to not specializing in dealing with the chronic complicated infections. So my uro was in touch with another researcher who did have more knowledge and has written articles about MSK and biofilm infections to help me get
my life back.

The point here is working together and realizing there is no one doctor with all the answers.  I hope that you will work with me here, so that maybe we can get these
wonderful men together to make a difference for MSK in the years ahead.  I know at this point I have lost count of the patients that have contacted me desperate, in pain with no doctor who believes their pain is real or related to MSK. Many of these people have been left by spouses, treated as drug seekers and crazy by medical professionals and even their own families.  I wish I could record every e-mail, phone call or pm I have gotten, this is why I feel so impassioned to find answers and try to
get help for others. Few doctor do acknowledge that MSKer's can have pain with not stone in the ureter and no infection showing on standard UA,  therefore little research or treatment protocols have been established.  Not everyone has access to go to these specialist either so we need to help get the info out there so patients have access to care at the home level!

Again, I would love to read about any options they have give you as well as any articles that are connected to MSK and stones disease!

IT IS ONLY TOGETHER WE CAN MAKE A DIFFERENCE FOR MSK IN THE FUTURE!

Shelly




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Pulling together varied resources and patient info / knowledge / experience is vital to research and helps so many of us here, on this very community!  Thank you ALL for helping us find a cure!!!!

C~
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Hello. I just found rhis post. I will reply asap. There is alot there that I need to sa and I am not feeling well However I will re-post shortly. Thanks  Cara
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PS I am sorry that I have never heard of Doc. Wolfe, however I will do my research. I am always intrested in new subjects. Like yourself, I have particapited in much reasearch with some wonderful and outstanding Docs. from around the world.
I also know the feeling quite well for all the thousands of calls and e-mails, to me in desperation. It is a very sad situation. There is also much new research that will become available shortly, on the dangers of the Lithotriposy machines. I also particpitated in this study. I think you will find it most intresting when it becomes available to you. There may be some available now I will check.
As I said I will repost ASAP, in answer to the above stated. Take care. Best.... Cara
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Hi again. I just wanted to take the time to share with everyone a way to keep the research $$$ down. Every year there is a National Kidney Walk day that rasies money for that cause. Mine is in NY and I have been doing this for years. It is a fun day and you meet many great people. I know many docs. who also walk every year.
If anyone is intrested there is still time. Just google www.kidney org. You will find all the information needed to join us for a really great cause in your own home town. All pledges are tax deductible. If anyone is intrested and needs more information, please feel free to drop me a line, and I will be ever so happy to help you with whatever you may need to join in for a day of fun and a really great cause. Best..... Cara
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Well yes I am tired. I made an error above. It should say, anyone intrested in helping to raise research money lol. Stay well all. Best.... Cara
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Cara,

I was under the impression from you pm's to me and with your post stated above that you were in touch with Dr. Wolf however found that in your case this procedure was not a good thing to try?  I think what your saying is that before this you had no heard of him?  I have an article on hypercalturia (sp?) that I was surprised when I looked back over it again later he was one of the contributing authors.  I do know at the University of Michigan he has many who work beside and under him on research as well.

I have heard of this walk-a-thon .   The money goes for kidney research etc. but how do we go about making sure the $$ raised go for research on MSK?  I know a lot of research $$$ are out there and much is spent on stone research but I have found little other then Dr. Wolf's article on the procedure that discusses research $$$ on MSK and specifically pain.

If you hear of any on going studies on this PLEASE let us know!
There are many who would be willing to be part of a clinical study too!

I look forward to hearing any information etc you find on treatment options for us!  Please let me know also about the study on litho itself.  I had several concerns after only having this done once
and would love to read it.

I did have one doctor/researcher I spoke with tell me when I was concerned with the infection risk on breaking apart the stones or biofilm for me with either the Holmium laser or litho busting apart the calcifications in the kidneys, that litho because it goes from the outside in does nothing to destroy the bacteria itself.  The Laser though this is still a risk will destroy bacteria for any places it actually touches.

That said infection was a HUGE concern for me and
I requested IV antibiotics but was not given them only an oral that
would have little benefit to the type of bacteria I am fighting.  I did get pretty sick post op as we expected and my uro here gave me 2 weeks of IV's. OK one week of IV's before I got a blood clot and one week if IM injections 3x a day.  NO FUN but I have not required any more IV's etc now post op over a year! (I am allergic to preservatives and all the Heparin available here had them in it so we had to flush the IV's with sodium chloride.  If I ever have to do this again, I will get the preservative free heparin here, and start a low dose of aspirin before starting the IV's!)

This is another area that I would like to see more research $$ spent on stone and biofilm infections esp. in the MSK patient. As well as the risk of these treatments of infection post op.

PLEASE keep us informed of any clinical studies and research you find on this as well.  This is the heart of the work we are trying to do here! Thanks for taking time to answer and I look forward tor reading the study on litho.

Shelly

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Hello. I am a 21 year old female mother of two. And today at 2 pm I was told I have Medullary Sponge Kidney. I have no idea how to react to it, and have never heard of it. I've been in constant pain for the past 6 months. Only relief is being at home not moving. Doctor told me nothing can be done and It is something I will have for the rest of my life. He said in my case I was probly born with it. I've had two times when I was literally cringing in pain and in tears. Not from stones but from the pain in my side. Mostly on my right. But the last three months it has moved to my left side as well.

I've had three stones in the last three months. The first one hurt the worst. And I've had about 30 UTI's in the past 5 years. Everyone told me I wasn't washing properly...ect.. Now I finally have an explanation that's not so embarrasing as that, lol.
On top of that I limp when my side hurts and that sets of my osteoathritis and by the time my side calms down I'm still limping from my legs hurting from limping so long in the first place.

I hurt the most when I am too active. I can't walk at a fast pace for more than 15 minutes. When I have to walk to work It causes me so much pain I limp to the whole shift. Even the customers notice because they come in so often. I am grateful my fiance is there to take me to work.

I have a stone I caught. I couldn't believe I forgot it at home. He said to take it to the other doctor as soon as possible. I waited two months for this appt. just for him to tell me I needed to keep seeing the doctor I saw before him. But he was really nice and finally I found out what was wrong. All I knew before that was the calcium, stones, and kidney part.

I have no one to talk to at all who understands what I am going through or have any idea what I'm talking about. I am adopted with no family medical history.
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Lyra, I am sorry that you are in so much pain esp with 2 little ones! I know that when
we are first diagnosed though it is a relief it is also a shock and hard to accept!  There is so much info here with our health pages on the top right side of this forum to get you started.

Here is also the link to all the Health pages:
http://www.medhelp.org/posts/show/565929

This articles is the one I wrote specifically on MSK and Pain.

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

I tried to find the link but was not able to to put here, we are not really able to post direct links or personal contact info here either.  If you would like to pm your e-mails
to me I would gladly send you the pdf this article!  I would also be glad to call and talk to you.  Sometimes it is easier to talk one on one then to just post an answer here.
I will send you a message with my e-mail address etc. and you can feel free to contact me!

Hang in there, you are not alone!  You are among friends here!  Together we are making a difference in the lives of MSK patients!

Higs!
Shelly
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I have not been on in a while, but back to check in and see what's going on.  After 3 surgeries 2 on rt. side and 1 on left, (with dr. wolf) I still have to take daily pain meds, but UTI's have been less.  I AM far better off than i was but now that i have some of my life back, i want more.
My mother in law died Oct. 23, she was my friend and it was a very hard ending and took a toll on me.  I flared up and ran out of pain meds a week early so my PCP was not going to refill my meds.  He was just being a butt head but it prompted me to think more about not settling for the bare minimum.  I want to be med free, that's it!  Or at the very least not have to take pain med every day.  It *****! So i'm going to schedule appt with Wolf and my nephro (maybe) and see if there is more they can do.  I hate to jump back into surgery but reading this thread brought me back to when i HAD NO LIFE and so i feel there is def. room for improvement.
Lyra i feel for you, but there is hope.  It's not easy, you may have to put yourself out, change diet, life style, spend $$ but there in no price you can put on having a quality of life.  The more i get my life back, the more i want.
I dont drink anymore, no chocolate, lower meat in diet, keep away from dark green food, root food, pop etc!
I feel like I am constantly greiving for the life i hoped to have and the pain i suffer, but we have something to work with so i remain hopeful.
I'm from Michigan and I have 5 kids.  I'm busy.  I can push myself along better than before if i take my meds Cymbalta 60mg and Vicoden 750 2x daily.  On good days i can cut one in half but it's a catch 22....the better i get the busier i get (GOD i love it) and then i have my days when i have to couch it and stick to drinking water.  Movement definately plays a part inthis for me too. So I cant work hard like i used to, again i get mad, i'm on the hyper side so I have to busy my mind by doing my art and reading something to get me thru, and i pray of course!
Keep Hope!

Shelly I have not abandoned you due to feeling better, I just get depressed seeing so many out there havng this so i'm just trying to give as little attention to this as possible.  It's the only way i can deal with it.  You guys that stick it out are great!
my email is ***@****  just let me know your from msk so i dont delete, just in case someone needs to talk!
my best to you all!
hollie
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Thanks for the update Hollie, I am soo sorry to hear about your mom!

Hang in there and I am here any time you need to talk!  PLEASE let me know of any treatments or new ideas Dr. Wolf comes up with!!!

Dr. Neal in St.Louis also seems to be somewhat of an expert on mSK and the infection or even biofilm issues.  At least he is the most knowledgeable on this area I have found.  His patients speak highly of him.  MAYBE your docs would talk to him too.  My uro has consulted with him!  I also send Dr. Wolf a copy of his article on the complicated UTI some time back.

Keep in touch... we can not post e-mail address on the open forum.
Privacy protection issue so please pm your addy in case it has changed!

Shelly
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