I am a 36 year old female that was diagnosed with MSK in 2009. At that time, after multiple lithotripsies and a large hematoma on my left kidney, I was told that I had a large stone that was too high up in my kidney to do anything about. I have been in constant pain since then. Fast forward to June 2011, and the 9mm stone has finally moved to where it can be dealt with. Two lithotripsies and bilateral stints down, who knows what's next? My question is, I have been in excruciating pain and my urologist won't prescribe anything that works. I am allergic to morphine, dialotid, and hydrocodone. He did prescribe toradol once, but after I'd finished taking it he told me it damages the kidneys. I told him I don't need anymore problems with my kidneys, so now all he will prescribe is tylenol 3 which I have told him repeatedly, doesn't work. I broke down and called his office the other day in tears because I was in so much pain, and the nurse discussed with me several things she could call in. After speaking with the doctor, she called me back and said he's giving me tylenol 3. I don't understand why he won't listen to me..I am not just after drugs, I survived the last 2 years without any pain meds at all. I can't walk by the end of the day and I have 2 young children to take care of. I don't want to be high all the time, I want to be able to function. What else can I do? People tell me to find another doctor, but how do I know the next one will be any better? Even my nephrologist tried to prescribe hydrocodone, even though it's plastered all over my charts that I'm allergic to it. I'm at my wits end and not sure where to turn. Do I have any options at all?
I have gone through your case history. Medullary sponge kidney (MSK) predispose to recurrent kidney stones and urinary tract infections. First I would like to find out what is cause of pain?
In your case, probable cause of pain is either the stones or a hematoma. If a hematoma is causing the pain, It needs to be surgically drained. Decompression will relieve the pain.
As for your stones, I think surgical procedure is the best treatment to relieve pain. In your case I think it is better to remove it by Ureteroscopic lithotripsy (URSL) or Percutaneous Nephrostolithotomy (PCNL). You may need to do the stone analysis once it is removed. Stone analysis might help us formulate a better diet to prevent recurrent stone formations in the future.
As far as pain killers are concerned. All NSAID group of pain killers can produce kidney damage. Among NSAIDS drugs, low dose aspirin [40 mg] and sulindac are relatively safe and may be tried for pain relief temporarily.
Discuss about these options with your primary doctor / urologist. You may try aspirin or sulindac, but I would prefer to treat the problem by surgical means than by medications.
Hope that this information helps and hope that you will get better soon.
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