Choledochal cyst and possible caroli disease

[Misty Mc]

Just told I have intraheptic choledochal cysts with possible Caroli disease.  I know this is very rare disease.  Any information would be helpful.  It was found after gallbladder surgery.   Is it possible for surgery or will it be a transplant?  Any advice will be helpfull.  Dont have a appointment with liver doctor untill Aug 5th.  Would like to be as prepared as possible.

Thank you,

Misty

[lauraandlen]

Hi Misty,

I just had an endoscopic ultrasound.  The doctor who did the EUS said the common bile duct is diffusely dilated.  I was told I might have a choleductal cyst and possibly Caroli's disease.  I was also told it might be scar tissue.  The doctor is planning to do an ERCP and additional biopsies.  I know biliary cysts are rare, and there is a danger of cancer developing in them.  I'm hoping for just scar tissue, but my regular GI doc got me nervous when he gave me literature to read on choleductal cysts and bile duct cancer. Can an ERCP give a lot more information than the EUS?  Will someone be able to definitively diagnos this properly?  Because if it is indeed a choleductal cyst, from what I read...it should be taken out.
Thanks for any information you might have.
Laura R.

[georgie439]

Hi Misty, I'am facing something very similiar, choledochal cyst
w/ dilated ducts through out liver and bile duct, wasted soo much
time lookiong at my panc!!

Can you right me, they have no idea yet, just had ecoscope w/ ultrasound
had about 5 biop's

would love to speak with you.

                                                   Sincerely,
                                                           Denise
or   georgie430   hotmail.com

   the  @   sign goes between the 430 and the hotmail
but I'm sure you know that

  With all the best and I look foward to hearing from you  PLEASE
                                                                                        Denise in NY