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  • Biliary dilation, suspicion of ampullary or duodenal mass.

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    Old 03-17-2016, 12:11 PM   #1
    JenJen101
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    Red face Biliary dilation, suspicion of ampullary or duodenal mass.

    After 7+ months of upper abdominal pain-it's under my right rib cage/breast area-I finally decided to talk to my Dr. I've lost over 40lbs, been extremely nauseous & have vomited multiple times, have no appetite, severe constipation, & lethargic. I had my gallbladder removed in 1995. I'm 43.
    My Dr first had me have a CT, which showed moderate extra hepatic biliary dilation & suspected mild intrahepatic biliary dilation. It was recommended I have a MRCP.
    The MRCP showed extrahepatic bile duct dilation up to 18mm again noted, similar to recent CT. Bile ducts are normal, as is pancreatic ducts. Under the comment section the Dr states that the distal CBD does not form a normal taper but rather is blunted, & there is a suspicion of an adjacent ampullary or duodenal mass.
    Next, 3 days later I'm sent in for an endoscopy w/biopsy. This showed nothing-no mass, no nothing. They now are wanting a transhepatic cholangiogram or a biliary scan.
    Does any of this make sense & if so is it possible that an endoscopy wouldn't be able to find the same things that were found on the previous tests? Thanks so much! I'm at the end of my rope & am beyond tired of the non stop testing w/no answers.

     
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    Old 03-19-2016, 11:29 AM   #2
    quincy
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    Re: Biliary dilation, suspicion of ampullary or duodenal mass.

    Unfortunately, it does make sense. Some things seem to be very difficult to diagnose and sometimes never seem to be diagnosed...with whatever is going on resolving itself after testing.
    I do know of someone who this happened to with no confirmed diagnosis, necessarily, but improvement after he was in serious condition.


    Percutaneous transhepatic cholangiography (PTC), from what I've read, seems to be your only other option at this point. If I were in your situation, considering your physical state of feeling consistently unwell...it might get to the solution.

    I have a questionable diagnosis of either PSC or PBC...both biliary diseases, but I refuse to have an ERCP because of it being invasive and possible side effects. I wasn't wanting a fishing expedition when I was feeling fine (this was all based on my liver enzymes test results and the fact that I have Ulcerative Colitis). I waited for the MRCP 10 years later and it's possible that I have either (based on the 3 I've had so far), and while I'm on Ursodiol, with good results of lowered liver enzymes almost immediately, it's still totally unanswered...so I'm now going to see a liver specialist who will hopefully give more clarification based on those tests. I will refuse an ERCP as well as biopsies when things are in a state with no changes.

    While I'm not in the same situation as you are, it seems the doctors are going thorough non-invasive testing process with some results which are elusive. I would probably continue with this next one in the hopes of relief by diagnosis and hopefully treatment.
    I'd also suggest you get copies of all your test results you've had so far for your records and research.

    Please keep us updated as to how you're doing, etc.

    q
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    Old 04-18-2016, 11:15 PM   #3
    JenJen101
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    Re: Biliary dilation, suspicion of ampullary or duodenal mass.

    Quote:
    Originally Posted by quincy View Post
    Unfortunately, it does make sense. Some things seem to be very difficult to diagnose and sometimes never seem to be diagnosed...with whatever is going on resolving itself after testing.
    I do know of someone who this happened to with no confirmed diagnosis, necessarily, but improvement after he was in serious condition.


    Percutaneous transhepatic cholangiography (PTC), from what I've read, seems to be your only other option at this point. If I were in your situation, considering your physical state of feeling consistently unwell...it might get to the solution.

    I have a questionable diagnosis of either PSC or PBC...both biliary diseases, but I refuse to have an ERCP because of it being invasive and possible side effects. I wasn't wanting a fishing expedition when I was feeling fine (this was all based on my liver enzymes test results and the fact that I have Ulcerative Colitis). I waited for the MRCP 10 years later and it's possible that I have either (based on the 3 I've had so far), and while I'm on Ursodiol, with good results of lowered liver enzymes almost immediately, it's still totally unanswered...so I'm now going to see a liver specialist who will hopefully give more clarification based on those tests. I will refuse an ERCP as well as biopsies when things are in a state with no changes.

    While I'm not in the same situation as you are, it seems the doctors are going thorough non-invasive testing process with some results which are elusive. I would probably continue with this next one in the hopes of relief by diagnosis and hopefully treatment.
    I'd also suggest you get copies of all your test results you've had so far for your records and research.

    Please keep us updated as to how you're doing, etc.

    q
    I can't believe I didn't see your reply! I've been looking up any type of information regarding my current situation which brought me to my post & your reply. Thank God! Here's my update.
    I went to my GP & after a long talk w/her I decided to schedule the endoscopic ultrasound w/biopsy. I'm having it done on 5/3 at our local hospital under general anesthesia. I don't exactly understand why this test is done under GA when my last endoscopy was done under conscious sedation. I hope to get the reasons for this explained.
    My GP said my extrahepatic bile duct dilation up to 18mm is 2x's what is considered normal in a post chole patient. I wasn't explained this when the other Dr went over my MRCP results. I've lost another 10lbs since last month, my nausea continues, as well as constant burping, horrible smelling~ok let me say unbelievably beyond foul smelling gas that I did not think was possible to come out of me. Constipation continues even though taking Movantix, fatigue, & a very odd new symptom. I've been getting these horrible attacks in which I feel as if I'm on fire. I'm sweaty, & my arms, chest, & fave turn beet red. It was unbelievable to walk into the bathroom during one of my first attacks to see the bright red color! It passes after about 10-15mins, & leaves me feeling completely exhausted. I didn't include in my previous post about the fact that I also never feel rested, even after sleeping 10-12hrs. I underwent a sleep study almost a year ago & ended up w/a CPAP machine & still I do not feel rested.
    Honestly I'm becoming seriously concerned that I have cancer. I've had a very healthy appetite my entire life & when I realize at the end of the day that I haven't eaten anything yet I'm not hungry, it worries me. Not to mention the scheduling office called 8 times in 6 days & I received a letter from the place in which I had my endoscopy stating I had not scheduled the recommended tests, which was vitally important.
    I greatly appreciate your advice & hope you have some sort of clue to what in the world is going on. I don't know where else to turn, nor know if I'm just blowing this way out of proportion. Thanks so much again.

    Last edited by JenJen101; 04-18-2016 at 11:44 PM. Reason: I didn't include my new information

     
    Old 04-20-2016, 06:14 PM   #4
    quincy
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    Re: Biliary dilation, suspicion of ampullary or duodenal mass.

    Hi Jen...thanks for the update. I don't know how much I can offer. Have you been to see a liver specialist? or is this all through your GP?

    It's a good thing you're having another test done, hopefully, something will be seen and a biopsy can be taken. You could ask the hospital department where you're having it done and ask about why general anesthesia and not conscious sedation. It's possible that having it done externally and maybe they have to move you around, it's just easier for them to locate the area?

    I realise the fears about cancer and would be worrying about the same thing.

    Is it possible that the flushes you're getting are related to hormones? Perimenopause can start early in some women. How often are you getting them? If hormones are out of whack, that could also interfere with your sleep and energy levels.

    Is sleep apnea the reason for the CPAP?

    Have you ever been jaundiced?

    The not being hungry would be a concern....even more that you're forgetting that you haven't eaten. But it could also mean that something in that area is possibly pushing on your stomach and changing the messages in it to the brain not triggering hunger.

    The other thing I was thinking is if something possibly pressing or interfering with the vagus nerve that controls that area of the body. Could be why the burping, slowed stools, loss of appetite, etc?

    Regarding the recommended tests beforehand....were you supposed to set them up? Seems something is missing in the communication from your doctor to you possibly?

    You have lots of time for researching and creating more questions.

    I'm sure your doctor is frustrated as well since you're obviously having issues interfering with daily functioning.

    Thanks again for the update. I've started to put instant emails on responses to threads :-)

    q
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    Old 04-21-2016, 02:21 AM   #5
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    Re: Biliary dilation, suspicion of ampullary or duodenal mass.

    I'm amongst the ones who have problems after gallbladder removal, though mine are not as bad as yours
    I have bile reflux which isn't helped by PPI'S. And have had Gastritis and Duodenitis which caused nausea, gnawing pain and lack of appetite
    Also have a constant URQ pain

    Re the pain I too feared cancer
    But after exhaustive tests I have been told the pain may be from the clip they leave behind after surgery

    I hope you can be helped soon. The weight loss needs to be addressed for sure

    Just a thought but constipation can be eased by taking daily home made milk kefir (made from grains)
    I use organic full fat milk and 24 hours 'brewing' time is best for constipation and taste

     
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