Medullary Sponge Kidney Disease (MSK) Community
Diagnosed with PAPILLARY NECROSIS
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Diagnosed with PAPILLARY NECROSIS

Hey all.
Sorry it's been so long.. I lost my password and had to reset it. I was feeling great for a long while, but in August, I started going down hill.. I got really blocked, and had a catscan done. These were the findings I'm typing straight from the catscan report.. (anything that checked out normal, liver,spleen, pancreas, etc.. are left out.

There are numerous calcifications at the corticomedullary junctions of both kidneys which are too numerous to count. This suggest medullary nephrocalcinosis and papillary necrosis. I would recommend clinical correlation (????)
There is a stone at the left ureterpelvic junction measuring 5.8 mm in size with promimal hydronephrosis. These calcifications are easily visualized on the scout film indicating that these are radiopaque stones.

Impression:
Numerous bilateral renal stones at the cortical medullary junctions of both kidneys suggestive of renal papillary necrosis. A 6 mm stone at the left ureteropelvic junction with proximal hydronephrosis.

OKAY.. so I go to the uro.. and she doesn't tell me anything.. other than surgery is needed to remove the stone that's blocked.. and sends me home with flomax, demerol, and uristat, I asked at the front desk for a copy of my catscan report and read it myself.
I don't know if she read anything other than 6MM stone.
The catscan was done two weeks prior to my visit, I had been trying to pass it on my own. My deductible is $5000 and I have yet to be approved for disability.

WHAT DOES THIS MEAN? I'm a little freaked out.. I read on the internet and it wasn't good.. it said, it's caused from several factors, (blockages) and also long term use of OTC meds , tylenol ibuprofen, NSAIDS, well with me having Rheumatoid arthritis.. NSAIDS..RELAFEN AND STEROIDS. (PREDNISONE) are a part of my everyday meds.. along with Demerol daily.. for pain and I have taken Tylenol for years... esp.. Tylenol PM because I have trouble sleeping.

Any suggestions.. or advice, or support would be appreciated.
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489228_tn?1291535054
HI, Amie

Ok I looked it up, and recognize some of it from my self.  The numerous calcifications in the medullary is what we all have here with MSK, however if I am ready this right the stone in the ureter has caused a blockage that is killing an area of the kidney and the hydronephrosis, is also inflammation in the kidney.  Most likely both of these things
are caused by this stone in your ureter and it needs to come out before you get long term kidney damage!!

The hope is one the stone is gone and circulation is restored to that area of the kidney
that it will heal and respond quickly.

Keep us posted on how your doing!
Hugs!
Shelly
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686246_tn?1252428681
I'm seriously trying to void the surgery if at all possible. I've been taking flomax, antibiotics.. and I have passed 3 small stones since the catscan and drs visit, I'm hoping that the 6mm stone may have been a cluster, and the pieces are coming out.
I am going to have an x ray this week,  I went a while without seeing the uro after the catscan.. so it was moving reallly slow. The pain went away for a week or so and then came back, and I had to go to the uro.. it was in my bladder stabbing me, and I couldn't stand it anymore, she did find blood and bacteria in my urine and said by next week ,, we would need a KUB to make sure it's out. I haven't been feeling well.. flu like symptoms..and actually have been really depressed, crying alot, fatigued even more than usual.. and not being very nice to anyone at this point, especially my husband, we are seriously on the verge of divorce. I don't believe in divorce, but the constant pain and struggling financially has put a tremendous amount of pressure on  our marriage.
my deductible is so High I can't afford it.. honestly I can't even afford food so I can't afford a surgery. I've sold everything I could possible sell on ebay for money, I'm just flat broke, and the disability is taking forever!
So hopefully I passed it by now... hoping!
If anyone wants to pray for the disability case on me would speed up.. please do so I'm praying myself for answers, for help, and for a speedy disability and if God can give me the knowledge on what I can do it speed it up.. to let me know. I have an attorney, but there doesn't seem a rush on their side.. why try to speed it up.. the longer it takes, the more money they get off your settlement. I've gotten alot worse since the denial was taken over by my atttorney and he appealed the case, and since the denial. I have been diagnosed with facet syndrome,  herniated disc in my back L4 -S1, and my kidneys have gotten worse, and I've also been put on Demerol 50 mg every 3 hrs since I was denied! Nobody could possibly work with all of these problems, not to mention the pain meds.. you can't even drive on pain pills, ( even though, I myself  have grown a tolerance to the demerol) and honestly can't tell a difference, when I take them for pain. I honestly don't take them every 3 hours.. I do take one in the am.. then as needed for pain ( if needed ) so sometimes.. just once a day..... I usually have extra's for when I'm in sever pain on bad days and can take two every few hours instead of one and that helps better.
okay well sorry to blabber..
hopefully all turns out well.
thanks
amie
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489228_tn?1291535054
Amie,
  I understand the pressure the financial puts on your marriage as well as the chronic illness itself.  Sadly, seems like those we need the most are the ones who pull away.
However you are not alone!  I would encourage you to see if your husband had any charity programs etc.  If that stone is in the ureter causing a blocking, when the kidney is basically non-functioning, the pain can go away but the kidney can be damaged for life if it is left untreated.  I will be praying for your disability etc. as well!  Hang in there !!


Do ask around and see if there is anywhere you can get this stones out if it remains in there.  I have heard of people passing bigger ones that I thought never would!..

Please please keep us update I care about you and am concerned!

Shelly

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691983_tn?1266808432
sorry you are having such a hard time amy,i was doing great but my pain was getting worst from over working.i cut my hours back now.i really hope you will be ok.it's  so hard working in pain,but i dont have all the joint pain on the vitamin d.people really have no clue what we really go through with this disease.it bites.i have been to the er 2 times in 4 months passing but they said they could not tell because i have so many.thw flomax helps me too somewhat! get back to me soo shelly love you miss you.i new the link to face book i started one have gotton to finsh it yet..god bless every
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691983_tn?1266808432
i also now have papillary necrosis,i thought i was doing great on vitamin d.till about 2 months ago started lots of pain again passing stones like crazy .so i just got in to see nephro he order a ct ,and blood work!!the vitamin d levels are now way to high and i have 2 times the stones i ever had all do to the vitamin d now.the dr that put me on the vitamin d never talk with the nephro befor starting me on the vitamin d i haven been to my nephro till now i see him yearly right ! well to late damage is done i also now have calcium on pevis and spine too all because i was given to big of doses of vitamin d!!!so what made me better i thought !!!vitamin DDDDDD !!!now made me worst then ever.so please have vitamin D check all the time .i also have medullary nephrocalcinosis guess what it says on line what i look up do not give people with this vitamin d!!!
so all of you that have been on vitamin d please have your kidneys looked at with a ct x-ray how ever.so all the years they tryed to help me prevent any more stones in 9 months from the vitamin d i have more then every!!!!
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691983_tn?1266808432
update,it was not the vitamin d my dr's still have me on it,it just this darn msk ,,the pain and stones are never ending !!!
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