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Another surgery?

In Jan 2008, I had been diagnosed with a couple of kidney stones.  I was having severe abdominal pain, nausea, etc.  I went in for a lithotripsy procedure in Feb 08.  That didn't work.  I didn't pass any stones.  In March 2008, I had left nephrolithiasis and lithotripsy again.  In March, I had a left ureterscopy with laser infundibulotomy (1cm stone).  It seemed to have worked until March 2009.  What seemed to be a UTI, turned out to be another couple of stones.  In april 09, I had a ureterscopy with laser infundibultomy and lithotripsy.  Deemed as renal calculi with infundibular stenosis.  I then stopped seeing the local doctors and went to U of M.  I was told I had nephrolithiasis and calcial diverticulum or hydrocalix.  

The decision to do a retrograde ureterscopy and the insertion of a percutaneous nephrostomy tube was made.  I had the tube in for 6 weeks.  It did releive the flank pain.  The tube was removed and BOOM, the flank pain returned.  This time, the doc insisted that it wasn't stones, but scar tissue and calcification.  He proceeded to do a partial nephrectomy in Oct 09.  

I am now 7 weeks out and the flank pain is as it was in June of 09.  Like prior to the perc tube being inserted.

I had a CT scan and it says that I have a urinoma.  This urinoma is in the same place as where the part of the kidney was removed.  The flank pain is getting out of hand.  The doctor says that I should once again have a nephrostomy tube put in to drain the kidney.  

Mind you, he keeps saying that my kidney is working fine.  However, all three doctors I have seen indicate that I have a very tiny ureter.  

I'm ticked off, scared to death and sick of this pain.  The doctor was so proud of himself,indicating that the partial nephrectomy surgery was a success.  yeah, a success.  That's why I'm having this pain still.  They called this a congintal abnormality.  If taht's the case, why does it wait until I'm 38 years old to give me a problem?  

Putting another perc tube in will result in what?   The flank pain needs to stop and I need to quit being someone's experiment.  to me, this perc tube will only be a bandaid for the real problem, whatever that is.  I believe that it has something to do with the size of my ureter and how urine drains from the kidney.  

Like I said, I have now the same pain (w/a urinoma) that I did without back 6 months ago.  Doc thinks I'm nuts, but wants to be there when the IR departmetn puts the tube in.  

Does anyone have any suggestions?  I'm at my wits end.  
1 Responses
Avatar universal
I empathise with you and do understand the pain & agony you’re going through. I am a bit surprised at congenital anomaly presenting at such a late age. There’s polycystic kidney disease which can present in the adult age and usually the presenting complaint is pain only due to the presence of stones in the kidneys. I suggest you to consult another urologist for the same. The root cause of the formation of recurrent stones in the urinary tract needs to be looked into. Percutaneous catheterization will tend to take care of the problem temporarily and the stones will form again if the underlying cause of the same is not looked into. I sincerely hope that helps. Take care.
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