Choliangiocarcinoma with chronic bile leak post surgery

Hello everyone-
my husband was diagnosed with PSC about ten years ago. Since then his care has been well managed at MGH in Boston. He uses Ursodiol and had balloon dilation which held up well for many years. During routine screening they found a tumor in his bile duct and last winter he underwent a surgery to remove over 60% of his liver. It was a very difficult surgery and recovery period. He is 42 years old and we have two young children. We live in the western part of Massachusetts about 2 hours from Boston and 3 hours from NYC. The most difficult part of the recovery has been a chronic bile leak at the site of the liver resection. Obviously PSC makes it very hard for the ducts to heal properly. He had an internal drain for about a year. They tried several times to ‘glue’ the leak with a medical polymer. They tried several other approaches with no change at all in the output of the leak. We are incredibly frustrated with the situation but also that our team seems stumped and does not communicate effectively with us. There isn’t really a ‘team leader’. Last week he was hospitalized due to internal bleeding at the site of the leak (caused by the leak). At this point we would like to seek a second opinion.

Does anyone here have any experience similar to this? We are beginning to feel we are the only people in the world dealing with this. And with that in mind, could anyone recommend a very high quality facility where we might get a second opinion? Traveling very far would be difficult but we are ready to consider all our options.

Thank you!

Hello. I’m sorry to hear your husband has had such a rough road with his PSC. I have forwarded your post to one of my hepatologists at Duke Medical Center here in North Carolina. He gave me an initial response that this was a “very tough situation” but he was going to confer with their surgeons to see if this is something they can help you with. I know North Carolina is a long ways from where you are but this may be an option to consider if they can help. Will be in touch.

PSC 2011 / Liver Transplant 2015


I can’t thank you enough. We have family I the south and are actually traveling to Nc for vacation later this summer so it isn’t out of the question. Thank you again!!!


I heard back from Dr. Muir today. Below is his response. Dr. Ravindra was the surgeon who did my transplant. Please keep in touch.

Hi Mr. Wilson

Dr. Ravindra said he is willing to review the case and see if he can help. Please have them call Charlene Newsome at 919-■■■■ to get records sent to his office



Oops. Forgot about how this forum strips phone numbers. I’ll give number a little different but you should figure it out.

Nine One Nine-668-three four two four


Here are two photos of me with Dr. Ravindra. One right after surgery in July, 2015 and the other three years later in January 2018. He’s a very special man in my life now.

Just wanted to confirm that you received my emails regarding Duke. Please confirm. Thanks!


Yes Mark I did- thank you so much!!