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Talked to hepatologist re: abnormal MRCP

Posted by sb4ca @sb4ca, Mar 26 9:01pm

I just had a follow-up MRCP to track a couple tiny IPMN's-those thankfully are fine. But the study was abnormal for something new. I finally was able to talk to one of the hepatologists at the University to explain what it means. He said they are concerned that I may have a mass or stricture at the head of the pancreas around the sphincter of oddi/ampulla area. Yet nothing of the sort is showing on the imaging.
He said whatever it is is causing pressure to build up, causing both the liver and pancreatic ducts to widen and even the ducts inside the liver. Since the last test my pancreas parenchyma went from normal to fully atrophic. Of course this is scaring me to death. On top, today I got an MRI report of my lumbar spine and it notes a liver cyst, yet that didn't show up on the MRCP either. I'm not too concerned about it, but it adds to the confusion of the accuracy of MRCP. Has anyone had similar findings? Last Saturday the University called to schedule an EUS ERCP in July, but when I told this doctor that, he said he's going to try and move it up. Any thoughts or comments? Thanks

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sb4ca | @sb4ca | Apr 12 9:30pm

Last told, I had an MRCP concerning for mass or stricture with an EUS/ERCP scheduled for July. Nothing shows on imaging, just increased double duct dilation now into the liver. I happened to have labs done for a different department last week at the University and asked the biliary docs to look at it because it's suspicious for possible malabsorption (anemic with various other abnormalities) with high non-fasting glucose and higher raised liver enzymes. Something let the gates open because two days later I get a call to schedule it next month and 20 minutes later, they called again and said my doctor wants it this month. So it's a week from today. At first I didn't want to wait until July but when they called and moved it to next week, it made me a little nervous. Of course nothing is really new about the clinical picture, but....

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Colleen Young, Connect Director | @colleenyoung | Apr 16 5:54pm
In reply to @sb4ca "Last told, I had an MRCP concerning for mass or stricture with an EUS/ERCP scheduled for..." + (show)
@sb4ca

Last told, I had an MRCP concerning for mass or stricture with an EUS/ERCP scheduled for July. Nothing shows on imaging, just increased double duct dilation now into the liver. I happened to have labs done for a different department last week at the University and asked the biliary docs to look at it because it's suspicious for possible malabsorption (anemic with various other abnormalities) with high non-fasting glucose and higher raised liver enzymes. Something let the gates open because two days later I get a call to schedule it next month and 20 minutes later, they called again and said my doctor wants it this month. So it's a week from today. At first I didn't want to wait until July but when they called and moved it to next week, it made me a little nervous. Of course nothing is really new about the clinical picture, but....

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@sb4ca, this is good and nerve-wracking. Good because your appointment has been moved up and you will get imaging. Nerve-wracking because it's been moved up and there seems to be a sense of urgency. Rather than leap to panic, I hope you're able to view this as diligent followup.

Good for you for advocating for yourself. Please post an update again after you get the results and review them with your physician.

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