SO, I have not read much on this site about dominant strictures (DS). It would appear that while PSC is a disease that results in strictures along the bile ducts, dominant strictures have a special significance. First they are not good. PSC usually results in more of a "bead-like" narrowing caused by the inflammation and fibrosing (scarring) of the ducts. Occasionally, perhaps as often as 40% patients can have a particular area where the narrowing is significant (less that 1.5 mm in the common duct for instance) Anyway, I did not know there has been studies supporting a higher chance of cholangiocarcinoma in those with DS. I am interested in what happens to those with DS....are you getting screened for cancer? Do you have tumor markers checked? Cytology on brushings, washings after scopes?
I was diagnosed about 2-3 years ago, and had been completely without symptoms. I just had a gallstone (small and now removed) which got aught up in what I am now learning is a DS. Working through what that means both in the short and long term and looking for any thoughts.
I have a dominant stricture in my large bile duct. They have ballooned it open, which did not work, and then put a stent in. Since the stent has been removed I feel like the duct is becomming occluded again. Last time when they went in they did biliary brushing and sent it to pathology. It came back negative, thank goodness. I did not ask how often they should do the scrapings.
I have a stent in as well. They are planning on removing it and we will see if the duct is still narrow. If it is, I suppose they will try and ballonn. There are studies comparing stents vs balloon but neither is clearly better at this time. I looked at your initial post and we have a fair amt in common. I have two children ages 7 and 9, and more than anything this diagnosis is difficult because of them, and what my/their future might hold. Right now I have no reason to think I would be transplant material in the upcoming year or two...but our futures are so unpredictable. Trying to feel confident, and yet be pragmatic can be a challenge. Would love to chat more with you....
When were you diagnosed? I was just diagnosed, go to see the liver specialist for the first time on the 10th. Have never been so excited to see a doctor in my life, I just want more answers. The GI doctor said that if this stent does not work they will need to perform a huge surgery in which they enlarge my bile duct and attach it to my intestines; this does not sound pleasant to me so I am hoping the liver doctor will have some other answers. I am in constant pain in my upper right stomach area and it radiates to my shoulder blade. Where are you from? I am from MA. I go to MGH for my care. I would love to chat with you also.
Hi bunny. I was diagnosed in 2010 aftr
Gallstone surgery. One stone was in my liver duct, I was sent to a dr and they tried an mrcp twice and a basket of sorts to try get it, no luck. I’m on ursofalk and questren . I have been symptom free for 3 yrs now and my gp won’t send me to livet specialist until nessiscery he says. I often think I should be going anyway.
liver specialist,,you need to be monitored by an expert.....
jokeyj said:
Hi bunny. I was diagnosed in 2010 aftr Gallstone surgery. One stone was in my liver duct, I was sent to a dr and they tried an mrcp twice and a basket of sorts to try get it, no luck. I'm on ursofalk and questren . I have been symptom free for 3 yrs now and my gp won't send me to livet specialist until nessiscery he says. I often think I should be going anyway.
JokeyJ: It is your life, not that of your GP. You should be seeing a specialist. If anything, building the relationship now, regardless of the fact you may be years away from needing specialty care may benefit you in the long run. My fiance went through the transplant evaluation process in 2005. Getting to know the team and making his face familiar was useful for us. What we did was schedule 6 month check ups with the specialist and did routine procedures with them rather than with our GP. It did ruffle the GP's feathers but you know what, the relationship we've created with the hospital has helped several times. On a side note, we needed to get on the transplant list a few months ago and because the specialist was working super hard to get it done we were added in less than a day without any issues. What state/town are you in? Perhaps someone has a referral for you? Best of luck.
I did not know there were different types of strictures. My partner has has several stents placed and removed over the past few years. He recently had two removed last month that were in place for 2 months. Our team prefers not to use stents as they are foreign to the body, obviously.
I live in Boston and also go to MGH. I have been seeing Dr. Dan Pratt for 19 years now (followed him from Tufts/New England Medical Center) and he is great. I was originally diagnosed with ulcerative colitis and autoimmune hepatitis in 1994 and 1995, respectively. PSC didn't come into the equation until 2009 (detected via blood tests and then MRI). I get seen every 6 months and have MRI's every 6 months now and blood tests every 3 months. Before PSC came into play, the scarring I had from AIH actually reversed to a point where they could not even tell I had the disease. Then blood tests got abnormal and they found the beginning of PSC. Fortunately it has been pretty stable and has not changed much in 5 years and I have no real symptoms (taking Urso Forte and Cell Cept). I get screened for cancer, tumor markers via blood tests and they look at MRIs closely. I may have one dominant stricture forming on the far side of my liver (away from the 'root' of my bile ducts) but my doctor said that there would be little they could do for it being so far up. That (smallish) section of my liver could eventually atrophy but the rest of my liver should be able to compensate (and it may regenerate on its own) but not sure how realistic that is. The rest of the fibrosis / beading that they can see is mild and has remained stable in the last 5 years.
Everyone is different with this disease and I hope that this stent works out for you Deborah. MGH is one of the best hospitals in the world and I'm extremely satisfied with the GI department and staff. They are great.
DeborahMA said:
When were you diagnosed? I was just diagnosed, go to see the liver specialist for the first time on the 10th. Have never been so excited to see a doctor in my life, I just want more answers. The GI doctor said that if this stent does not work they will need to perform a huge surgery in which they enlarge my bile duct and attach it to my intestines; this does not sound pleasant to me so I am hoping the liver doctor will have some other answers. I am in constant pain in my upper right stomach area and it radiates to my shoulder blade. Where are you from? I am from MA. I go to MGH for my care. I would love to chat with you also.
so, in f/u to my stent/CBD issue...I had the stent removed, the CBD dilated, and no replacement stent for which I am happy. Cytology/brushings negative gratefully. So, I am back to my normal life...on low dose urso, and sulfazine essentially without symptoms. Of course the ERCP does show typical PSC changes....beading/narrowing...but no real strictures. Plan going forward is to have LFT q 3 mos, ERCP yearly, periodic CA-19-9 and CEA (tumor markers) and life goes on. Not seen regularly at a transplant center but realize that in a year or two or 10 or never, I may be one of the "listed". I have done some preliminary work learning a bit about the transplant game but really not much to do I suppose