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Avatar universal

Stones in pancreas! Scared!

I'm mother of 7 (10 and under, yes all mine and my husbands ;) ).  33 years old.
I have 2 stones in my pancreas.  
4 years ago they misdiagnosed as a 2 cm Kidney stone.
2 years ago, they said it was a 4 cm pancreatic stone (or close to it)
5 months ago, they FINALLY took my word and did a amylase/liapase and it the amylase was up 10x normal level.
Scans said a 8 cm stone.

Now we are going down to Mayo Clinic.
2 months ago, EUS said 2 stones almost stuck together 6 cm in front in the head/neck region of pancreas.

After 1 hr. 45 min. ERCP they couldn't retrieve the stones they said I have an alpha loop type duct.

They said if I'm still in pain remove part of the pancreas, but, they hope to wait until the duct gets to 6 cm (currently at 3cm), then they will rework the duct work or something (I assume Puestow).  I get rechecked in February.

They said it was so rare for this, that they dont have a clear idea of what they should do.  I'm freaking out!  Always healthy up to this point. :(
1 Responses
Avatar universal
Hi, understand your predicament. Do you have pain now? The stone if large enough and is blocking a duct, then it needs to be removed. Like your doctors suggested you can wait and watch to see how it progresses and hopefully it becomes accessible to ERCP. You will have to monitor your symptoms and if they flare up consult your doctor. Good luck with your therapy.
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