Re: Bile duct surgery

[Guest guest]

Hi Darcy;

Like you, I would be concerned about the necessity of bile duct

surgery, and the risks associated with it. This used to be done, but

is no longer performed routinely. Dominant strictures are usually now

managed with dilatation via ERCP:

LaRusso NF, Shneider BL, Black D, Gores GJ, SP, Doo E,

Hoofnagle JH 2006 Primary sclerosing cholangitis: summary of a

workshop. Hepatology 44: 746-764

http://www.niddk.nih.gov/fund/other/PSCSept2006.pdf

" Dr. Kalloo (s Hopkins School of Medicine, Baltimore, MD)

discussed endoscopic therapy of PSC. Between 10% and 15% of patients

with PSC will experience high-grade obstruction from a discrete area

of narrowing within the extra-hepatic biliary tree (dominant

stricture).1,2,41 These strictures can cause sudden worsening of

jaundice and cholangitis. In the past, dominant strictures were

managed surgically. With advanced endoscopic techniques, they can be

managed using ERCP with balloon or coaxial dilatation.124-130

Clinical response can be achieved in 80% of patients without

cirrhosis. Endoprostheses can be placed across strictures, but stent

occlusion and cholangitis are frequent, and prospective studies

failed to show their benefit.131-135 Endoscopic dilation of dominant

strictures is currently widely practiced despite the lack of

prospective randomized controlled trials demonstrating its

benefit.136,137 Retrospective analyses using the Mayo Risk Score to

model outcome, however, have suggested that endoscopic dilatation

of dominant strictures does improve survival.130 "

I've read that prior bile duct surgery can result in poor outcome in

subsequent liver transplantation:

Br J Surg. 1991 May;78(5):564-7.

Primary sclerosing cholangitis: surgical options, prognostic

variables and outcome.

Ismail T, Angrisani L, JE, Hübscher S, Buckels J, Neuberger J,

Elias E, McMaster P

Liver Unit, Queen Hospital, Birmingham, UK.

The natural history of primary sclerosing cholangitis (PSC) is poorly

defined and its management remains controversial. Forty-eight

symptomatic patients (median age 39 years, range 8-67 years; 30 male)

with PSC were reviewed retrospectively. Thirty patients had

inflammatory bowel disease. Four patients (8 per cent) developed or

had an associated malignancy. Twenty-one (44 per cent) died; overall

5 year actuarial survival was 30 per cent. Twenty-three patients had

27 non-transplant related biliary operations (16 patients

specifically for PSC) of whom 12 died. Serum bilirubin was the only

parameter to improve after biliary surgery. Seventeen patients (35

per cent) underwent orthotopic liver transplantation (OLT) of whom

nine are currently alive (1 year projected survival of 55 per cent).

Previous biliary surgery correlated with a poor outcome (P less than

0.0001) after OLT. Being male, presence of cirrhosis, duration of

symptomatic disease (greater than 3 years) and a serum bilirubin

level greater than 100 mumol/l at presentation, were independently

associated with a poor outcome (P less than 0.05). These data provide

evidence that PSC is a progressive disease and conventional surgical

options have little influence on the outcome. Previous biliary

surgery adversely affects outcome following OLT. For progressive

liver disease, liver transplantation should be considered the

treatment of choice. PMID: 2059807.

So I would encourage you to get a second opinion. Someone at

Pittsburgh could surely help you in realistically evaluating the

risks and benefits of surgery, and giving you their opinion about

dilatation options.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

hi Darcy-

here's what has happened with my son. He had 2 strictures in his

common bile duct that they did the following with

1.did a balloon dilation

2.did another dilation 5 weeks later

3.placed a stent 6 weeks later

4.placed another stent 8 weeks later

5.replaced the stent again with 2 stents @ 10 weeks later

at this point they said that normally the best route would be to do a

roux-en-y- the surgery you talked about- but since my son has already

had @ 80% of his small intestines removed - he doesn't have any 'spare'

small intestines

6. two stents placed that once again clogged and occluded his common

bile duct

7. we were referred to a specialists who recommended an external

drain- probably a permanent drain

8. the drain was never done but plans were made to keep replacing the

stents until a more permanent metal stent was available in a

pediatric size.

9-12 more stents replaced quite frequently until finally we tried

going without stents for him after his 2nd HUGE endoscopic

sphincterotomy was done (big cut made so no muscle there to prevent

bile flow- just a big drainage opening basically

He has had a total of 13 ERCPs the first one because of a huge common

bile duct stone obstructing his common bile duct...then all the

treatments above.

The dr who did all the ERCPs- that did cause several really bad bouts

of acute pancreatitis and now left my son with pancreatic

insufficieny- was criticized for what he did.

I don't know what the best answer is or if that is decided on a case

by case basis ?? Maybe you could ask @ an external drain ??

Lori

lucky mom blessed with triplets

[Guest guest]

> Here are my concerns/questions:

>

> 1. If a little piece of plastic is able to keep my duct open enough

> for me to function why in the world would I want a major surgery?

You probably don't at this time. Back in July (message 95133)

from KY initiated a discussion of the pros and cons of various

treatments for bile duct blockage, including PTC, ERCP and roux-en-y

surgery. You might want to read through the archives see what was said

then.

>

> 2. Why can't I just be stentless and see what happens? Worse case

> is I turn yellow again, lose some weight and we stick a stent back in

> and then we think about this other stuff.

That is certainly one of your options. The problem is that your doctor

doesn't think this is the best course of action for you.

>

> 3. Does anyone have a suggestion on a dr. I can see about the

> surgery who isn't a cut first kind of doctor? I don't mind going and

> getting another opinion but I don't want to just head off for a

> surgery that at this point I personally feel is unnecessary. I live

> in Kent, Ohio so Pittsburgh and Columbus are only a 2 hour drive

> away. I won't go to the Cleveland Clinic.

Cleveland is closest, but if they are ruled out, Pittsburgh would be

my choice for a second opinion. According to the OPTN database

Pittsburgh has done about 6 times as many PSC transplants as Columbus

so I think they would have more experience with PSC in general.

Best wishes Darcy, on your search for the best solution for you.

Tim R, tx #3 7/7/07

[Guest guest]

Thanks , , Lori, Nina and Tim for replying

to my post. I had no idea that the big long word was

the same as a roux en y. It was nice to go back in

the archives and see what was said regarding 's

inquiry, to read about your experiences and to have

the research info.

I definitely feel like a surgery is a bad idea for me

at this point. It just doesn't make sense. I even

came out with a little bit bigger stent in Sept.

Since my dr. wants to refer me somewhere and I need

him to orchestrate the referral for the insurance

company I am going to go get another opinion but I'm

not letting anyone cut unless something really

changes. I am also anxious to talk to my endoscopist

in December and see if he is aware of all this.

Sometimes I'm just afraid that I get a little too

emotional and that I won't make a rational/intelligent

decision. All I thought about while the dr. was

talking was that he wants to screw up basketball

season. Not real logical. Thank you for providing

some logic for me. I have no idea how all you parents

out there can handle this type of stuff so well. It

is hard as an adult to know what is right for me. It

has to be incredibly hard to figure out what's right

for your child. I'm impressed.

Also, has anyone heard from ? How's he doing?

Thanks again,

Darcy

Go Tribe!

O-H-I-O Go Bucks!

Go Browns!

________________________________________________________________________________\

____

Shape Yahoo! in your own image. Join our Network Research Panel today!

http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7

[Guest guest]

Hi Darcy,

As usual I'm late, but just wanted to chime in with my experience.

I was faced with the same question due to what was thought to be

a dominant stricture-except that I had no symptoms other than that

the duct would pass no dye by ERCP. I was evaluated for the Roux-en-Y

biliary bypass surgery, but ultimately they couldn't figure out whether

the stricture was intra or extra hepatic, and the surgery will only

help with the latter. After the surgical evaluation failed, my GI/endoscopist

told me he

was developing a better scope for viewing strictures, and it might be

able to open the duct, so I jumped at that. His first attempt also failed, but a

year

later with a new version of the " spy scope " he succeeded. I never felt sick and

my LFTs never rose- in fact they went down after I started taking fish oil.

You can do the surgery later, but the ERCP should be done before the

stricture gets worse. If they are unable to pass a thin guide wire thru the

stricture, they won't blindly try to get the scope through. There is a point of

no

return with ERCPs. If they do stent it, it should stay open for a while. With

the spy scope, they can view the walls of the ducts and take biopsies

to survey for cancer.

So in summary, I would try to find the most experienced endoscopist around,

who has a Spy Scope. Try Pittsburgh. Mayo Rochester and Beth Israel Deaconess

in Boston developed them but someone had a procedure with one in Utah (was

it Denver?), so I think they are more widely available now. Do get that second

opinion

before making that momentous decision.

Martha (MA)

UC 1979, PSC 1992, asymptomatic

> > Here are my concerns/questions:

> >

> > 1. If a little piece of plastic is able to keep my duct open enough

> > for me to function why in the world would I want a major surgery?

>

> You probably don't at this time. Back in July (message 95133)

> from KY initiated a discussion of the pros and cons of various

> treatments for bile duct blockage, including PTC, ERCP and roux-en-y

> surgery. You might want to read through the archives see what was said

> then.

>

> >

> > 2. Why can't I just be stentless and see what happens? Worse case

> > is I turn yellow again, lose some weight and we stick a stent back in

> > and then we think about this other stuff.

>

> That is certainly one of your options. The problem is that your doctor

> doesn't think this is the best course of action for you.

>

> >

> > 3. Does anyone have a suggestion on a dr. I can see about the

> > surgery who isn't a cut first kind of doctor? I don't mind going and

> > getting another opinion but I don't want to just head off for a

> > surgery that at this point I personally feel is unnecessary. I live

> > in Kent, Ohio so Pittsburgh and Columbus are only a 2 hour drive

> > away. I won't go to the Cleveland Clinic.

>

> Cleveland is closest, but if they are ruled out, Pittsburgh would be

> my choice for a second opinion. According to the OPTN database

> Pittsburgh has done about 6 times as many PSC transplants as Columbus

> so I think they would have more experience with PSC in general.

>

> Best wishes Darcy, on your search for the best solution for you.

>

> Tim R, tx #3 7/7/07

>