Hi...I just saw your question from 2009 and I would like to know how you have progressed. I have an unknown bile duct dilemma stemming as far back as 2003. To this day and several specialists in the world, later, no one knows what this is I have. All they can say is autoimmune. In the meantime, I have had 24 ERCP's with stints put in since then but now not only is it just the issue I started with, but scar tissue has become dominent. This last time, the stints did nothing and they had to put four more in. I am positively heading for a liver transplant, but I was curious about your development as well. I have a blockage in my bile ducts that sits in the center of all three bile ducts which says, I cannot have my bile ducts rebuilt. They have biopsied the mass that sits there and cannot determine what that is either but it is not cancerous. Whenever they pull a piece of it off, it just grows back anyway. Can you tell me if you were able to get any help? And how many ERCPs have you had since then. I pray you are doing well.
My doc has not mentioned SOD, but I will ask him. I thought about a second opinion, but I had gone to Tulane in New Orleans to a specialist, and he recommedned my doc.
I echo CalGal's comments as well. It's imperative that you find a doctor who specializes in ERCP and diseases of the pancreas/SOD. There are a few centers in the US who are known for this, and many many many more doctors who will tell you they are experienced in ERCP.
If your doc has never performed manometry, you can't tell if you have SOD or the type. Also, that's how the doc determines (based on the manometery pressure reading) if you need to have a sphincterotomy.
I haven't had an ERCP yet, but when I need one I'll be heading to Indiana University. That's where I met with Dr. Sherman who is excellent. I also know that the University of Minnesota has an excellent program and one in South Carolina - there probably are more, but just to reiterate what CalGal said, please make sure your doc is experienced and is doing everything possible for you.
It sounds like you do have SOD, has your doc mentioned this DX to you?
Good luck - keep us all posted!
Manometry is where they check the pressure of the sphincter itself and the pressure within the bile duct. If you're doc didn't do that step, there's really no way to accurately know if you've got SOD.
Restless, there's no specific number as to how many stents are too many. The problem is that your biliary duct tissue may not be able to handle 'x' numbers of being 'invaded.'
Are you working with a doc who specializes in SOD (sphinter of Oddi dysfunction)? If you're not, I really, really want to push you in the direction of working with docs who handle SOD and pancreatitis routinely. I don't want to see you end up on a liver transplant list, which is what can unfortunately happen if the bile duct gives out.
If you're not talking to your doc about this, or if you have tried to talk to him/her and haven't gotten answers, please go to the SOD group at yahoo and talk to the people there.
With the ERCP's have you had manometry done?????