Medullary Sponge Kidney Disease (MSK) Community
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587521 tn?1238508522

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Hi All:

Sorry I haven't posted in a while.  I have just been terribly busy with the holidays.  I have to say that this was one of the best Christmas' I have had in years.

I have had very few bad days since my surgery in mid-November, to remove the painful build-up of stones from the collecting ducts of my left kidney.  I recently (last night) passed two stones both less than 1mm.  But my days without pain greatly out number my days with it.  This is such an incredible change for me.

I have posted some of the photos that were taken during my surgeries (the first attempt was canceled because my ureter was too narrow.  The doctor inserted a stent to dilate the ureter and we waited about 3 weeks to try again.  The second attempt was a success).  I have also posted some KUB shots where if you look closely you can see the stones in both kidneys.  On the right side there are a lot of large stones visible, but since it doesn't hurt at all we have decided to leave it alone for now.  You can see the different stents in a couple of the photos.  The earlier one is quite a bit larger because its main purpose was to dilate the ureter.  I have also posted a shot showing a rather large stone in my bladder.  I have looked at back x-ray's and ct scan reports, and it seems that this "calcification" has been present for over 3 years.  I am not sure why the doctor chose to leave it in my bladder as it seems, to my untrained eye, to be getting larger.  I guess that is my next question for him, when I see him for my final check up next week.

If anyone has any questions about my photos, or the surgery, I will be happy to try to answer them.

Otherwise ... Happy New Year to You All!  I hope your new year starts out peaceful and pain free.

Love, Becky
4 Responses
168348 tn?1379360675
Hi Becky,

I am so so happy that you had a wonderful Christmas and even better that you have less painful days now since your procedures. !!!  Thanks so much for the update and the pics.  On the KUB is the dark area stones or gas ?  I'm really not good looking @ these x-rays LOL . My Uro has to blow it up on his PC screen and point out my stones on the screen!

489228 tn?1291535054
   Thank you for taking time to share and post your pictures!!  I am soo glad you are better!  Thank you for sharing and giving some hope to others out there that are hurting as badly as you and I were a few months ago!!  I too am so much better and just spent a wonderful day with my family going all day.. (ok napping in the car, on the way, my husband drove:)!) but otherwise being able to be a part of their life again!!

   Before the surgery,, I could not even function and I was losing all contact with my kids, my husband etc.  Last week went went caving and I was even able to crawl.. on my hands and knees,(not belly crawl) 50ft into the large opening.  It is a precious memory!

I tell people, I know this is only a remission... so treat it as such and make each thing I spend my energy on count. I am also learning to pace myself and tomorrow I will take it easy!

So glad your busy living life instead of being in pain!... Lets pray the New Year brings more treatment options, MORE DOCTORS WHO WILL BELIEVE AND LISTEN TO THEIR PATIENTS AND BE WILLING TO HELP THEM,   and a long term cure for the chronic pain many live with!

Have a great New Year!
Shelly Matthewson
Private Researcher
IC Support Group Leader
Director of MOARK Interstitial Cystitis
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
587521 tn?1238508522
The large dark blotches are air/gas, I believe.  The small white spots are stones, or as we found out during my surgery, pockets of stones.  As you can tell, my kidneys are still full of them.  The Potassium Citrate (Uracit-K) I'm taking, seems to be knocking the stragglers loose.  But I am just glad to be rid of them.  Hopefully the medication will also do what it is supposed to do.  STOP THEM FROM COMING!!!!!!!

Happy New Year to All of You!!!

168348 tn?1379360675
I will look deep into my med cabinet .. i have some of that .. I got terrible gi symptoms which did not abate so didn't take it.  If I find it I'll let you know what the mg's are!

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