I was told I need to have stents put in because my right and left ducts are blocked and I was confused because I had never heard of small duct PSC patients getting stents or does it mean it’s not Small Duct? Anyone have any ideas?
I would certainly ask for a second opinion before having any stents put in. Make sure the endoscopist is a specialist in advanced ERCP work. I had many ERCP’s over my years with PSC and my doctor just flat out told me he would not put stents in unless it was an absolute emergency. The stents open the doors for infection as those ducts are just going to get clogged right back up along with the stents. I have heard of stents being put in the larger bile ducts that would come out on their own. I sure would be hesitant to let them do it unless they have some really good compelling evidence. Of course you have to trust your doctors if you have a specialist you really believe in. It’s a hard call but I would certainly question it.
PSC 2011 / Liver Transplant 7-2015
You are correct that small duct PSC patients would not need stenting or dilation. Unfortunately many cases of small duct PSC progress to normal PSC over time. I’d check with your team and see if this is what has happened.
There are three schools of thought when it comes to bile duct therapeutic intervention. The old school approach was to place stents and leave them in long term. Every 3-6 months the doctor would go back in and replace the stent. Today it is generally agreed that this isn’t a good idea because of infection issues caused by leaving these things in for such a long time. Still there are old school doctors that swear by this approach.
Today, doctors typically either place short term stents (a couple weeks) or simply balloon dilate the ducts. The research isn’t quite settled as to which has a better outcome. Personally I believe that dilation alone is the better option. Short term stents require two ERCPS, one to place the stent and another to remove it, and each of these procedures brings the risk of cholangitis or pancreatitis.
Unfortunately doctors tend to be set in their ways so there isn’t the option to request what type of intervention you would like. If your doctor uses an intervention you are unhappy with, seek another opinion elsewhere.
Thanks JTB for your response. What you said was “mark on”. I too agree that dilation is the better option. If you can ever get a endoscopist doctor that you like I would stick with him. That’s what I’ve done and no one else ever was allowed inside my ducts. I believe he gave me a number of years extra following his approach to this horrible disease.
Thank you all for the help. I have contacted my liver doctor with many great questions. I am really going to check into stents and see if dilation isn’t an option. I also questioned why this was happening given my current diagnosis is not large duct PSC, but small duct. I do not plan to do anything until I have had an opportunity to have my questions answered. I never thought I would have to become my own advocate and always assumed doctors just know what they are doing. This website really helped me see that we need to make sure we are experts in this disease.