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Incomplete Divisum-concerns

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Hi all-brief history on me. My father died 3 yrs ago from pancreatic cancer. 6 months after I started to get epigastric pain, turns out I had pancreatitis. However, ever since I continue to have pains and each time I check my lipase is mildy elevated. My pains come and go, a pulsating pain, some months are okay, others are pretty painful.

I have had the following tests in 2.5 yrs: CT, 2 mri/mrcp combos and 4 eus (all but one done by the same dr). My last one which was the 4th one noted "incomplete pancreas divisum", which my dr said I was born with and likely the cause of my issues. I am afraid that it was actually a lesion he saw, and that perhaps he is making a visual error thinking it is a IPD. The reason for my concern-why has it NEVER shown on any of my other tests?

If anyone has insite on IPD, I would much appreciate it.

In the meantime, I am waiting on labs for a tumor marker.
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replied April 25th, 2011
i too have a pancreatic divisium and had many many CT scan, MRI & MRCP and also an EDG before another doctor finally did another EDG/ERCP and found the divisum. I went through months of pain and hospitalizations. Since then I have had numerous stent placements as well as open surgery sphincterotomy. I would look into it further and question question question. I started out at a central texas hospital, was diagnosed at a San Antonio hospital by one of the states top gastro doc but now am treated by Dr. Glen Lehman in Indiana. YES I travel from Texas to Indiana for this doc but he is a god send! Bless you and hope you are well soon!
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replied April 25th, 2011
Is yours an incomplete div? What's an EDG? So doesn't sound unusual for this to be missed on Eus and scans? Are they hard to see?
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replied April 25th, 2011
No mine is a pancreatic divisum, complete! I never had any insight that anything was ever wrong until 3 years ago after I had my son. I started having severe pains that were debilitating. I thought I was having a heart attack or something! My lipase levels were through the roof each time. And apparently the divisum is hard to see as, like I mentioned before, I had numerous MRI's and CT Scans and then the EDG (endoscopic procedure to look with camera) the doc said he say nothing! I had yet another attack and he decided to send me to the specialist in San Antonio so that he could do an ERCP and test me for SOD (sphincter of oddi dysfunction). I did have that but he also found that I had the divisum. I went through many stenting procedures with him before he referred me to surgeons. I actually had a pancreatic oncology specialist do the surgery. After the surgery I thought i would get better but seemed to get worse. My lipase levels at one ER visit/hospitalization were 75,000 (yes that is correct!) They decided to go in and place another stent but were unable to do so, that is when they decided it best to refer me to Dr. Lehman in Indiana. He is VERY highly respected as one of the best! He found that I had strictures inside my duct farther in than the surgery had addressed. It has been a really rough road and if I think back now I can pinpoint times through childhood to now that I am almost positive I was having pancreatic pain and it was misdiagnosed as other things.
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replied April 25th, 2011
Wow thanks for sharing. Ive been so nervous with this new finding thinking how could he just now see it? With my dad dying of pancancer I am paranoid it could actually be a lesion. Just had a tumor marker test and should here any min. The dr that does my Eus is the chief of the dept so trying to have faith he really did see a div and not a lesion.

Interesting also that my panc pain started 2.5 y ago. Do you have acid reflux w yours? 5 yrs ago I was having chest pain-I thought it was my heart after many tests dr said it was acid causing esophogeol pains. Wonder if it was my panc the whole time. Though aciphex gave some relief. I always thought that was so odd and out of left field as the acid was daily for yrs. Now I drink aloe and it works well

The ed test-did they go into your stomach to view your pancreas what I call an eus?
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replied April 25th, 2011
What are they doing to treat your divisum?
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replied April 27th, 2011
Yes they did go down through my throat and into stomach. I do not have acid reflux though in the beginning I did have a doc put me on acid reducers, thinking I assume, that the less acids and enzymes my body produced, the less pain I would be in. I understand your concern and sorry for your loss. It is a terribly unforgiving disease and I too would be worried after losing a loved one to pancan. Hopefully you will get good news. As I said before, sometimes I can remember times of being sick and thinking i had heartburn or worrying I had an ulcer and now looking back I would put my money on a pancreatic attack. It drives me insane that I have it because I feel like there is such a stigma attached when someone says they have pancreatitis people assume they are a drunk, I dont even drink, never have!!!! I always feel the need to start explaining!lol, maybe that just makes people more skeptical haha. At any rate, it really isnt a laughing matter but i guess that is how I deal with it, laughing and praying.
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