extrahepatic biliary resection.

[Guest guest]

I'm very interested in hearing from folks who have undergone EHBR for

their PSC (rather than CCA). It seems, from what I have read, I would

be a good candidate for this--I'm non-cirrhotic, with a dominant hilar

stricture that is unresponsive to continual stenting. At this point I

am just having stents swapped out every 8-10 weeks; it's tiresome doing

this all the time, but it's also keeping me well.

I fully understand that this is just a treatment, and not a cure...

But I'm wondering if this procedure could give me a few more good years

(or longer...) without having to mess around in my bile ducts??

I see my hep on September 10th, and will talk to him about this then.

I would like to hear stories--success or otherwise--about this in the

meantime.

Thanks,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

We

> examined the results of extrahepatic biliary resection (EHBR) for

PSC...

> http://www.ncbi.nlm.nih.gov/pubmed/18471705?dopt=Abstract

>

> Noncirrhotic patients with PSC...low perioperative morbidity, few

> readmissions, no new cholangiocarcinomas, and 10-year survival > 60%.

>

>

[Guest guest]

Richelle,

I'm very sorry to hear that. Genevieve and are lucky to be able to at least be stented at this point. I know sometimes PSC sucks any way you look at it. I've probably had over 100 cholangitis attacks over the last 20 years.

Where are you getting your care? The supposed best endoscopist in S. Florida could not get into my ducts at all and 2 years later at Mayo they said they get into ducts as severely strictured as mine at least once a week. If there is one thing I've learned through the years....not all surgeons and doctors are equal in their skill. I know it may just not be in the cards for you at this point, but I'd think about getting a second opinion somewhere. I hope you feel better.

Jeff

Good on you people that are able to be stented. My bile ducts have closed over so much there is almost nothing they can do. My first op in June was to put stents. Nah, that didn't happen. Plan B: we'll put a PTC drain in. That was last week. Nah, that didn't happen, couldn't get in there. Feel like a pin cushion. Spent two nights in hospital, very little pain relief until I told them where they could shove their panadol, 31 hours without sleep, finally got some morphine (even tho it was all over the news that the morphine at my hospital has been watered down by someone). Still not getting anywhere. Plan C: who knows. Might find out in a couple of weeks when I go and see my gastro again. I hope there is a Plan C, It's only a deal if it's where you want to go. Find your travel deal here.

[Guest guest]

Hi Jeff

Thanks for your reply. I'm actually in little ol New Zealand so we

don't have a lot to choose from here, I'm afraid. Apparently I'm

seeing " the best " from what is on offer so I don't think there is

too much else I can do at this stage. Never mind, I'm not too

bothered at this stage and I will just see what happens next.

Richelle

New Zealand

>

> Richelle,

>

> I'm very sorry to hear that. Genevieve and are lucky to be able

to at least

> be stented at this point. I know sometimes PSC sucks any way you

look at it.

> I've probably had over 100 cholangitis attacks over the last 20

years.

> Where are you getting your care? The supposed best endoscopist

in S.

> Florida could not get into my ducts at all and 2 years later at

Mayo they said they

> get into ducts as severely strictured as mine at least once a

week. If

> there is one thing I've learned through the years....not all

surgeons and doctors

> are equal in their skill. I know it may just not be in the cards

for you at

> this point, but I'd think about getting a second opinion

somewhere. I hope

> you feel better.

>

> Jeff

>

>

>

> In a message dated 8/30/2008 5:51:25 P.M. Eastern Daylight Time,

> boolshit@... writes:

>

> Good on you people that are able to be stented. My bile ducts

have

> closed over so much there is almost nothing they can do. My first

op

> in June was to put stents. Nah, that didn't happen. Plan B: we'll

> put a PTC drain in. That was last week. Nah, that didn't happen,

> couldn't get in there. Feel like a pin cushion. Spent two nights

in

> hospital, very little pain relief until I told them where they

could

> shove their panadol, 31 hours without sleep, finally got some

> morphine (even tho it was all over the news that the morphine at

my

> hospital has been watered down by someone). Still not getting

> anywhere. Plan C: who knows. Might find out in a couple of weeks

> when I go and see my gastro again. I hope there is a Plan C,

>

>

>

>

> **************It's only a deal if it's where you want to go. Find

your travel

> deal here.

> (http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

>

[Guest guest]

Jeff & Genevieve,

I have had a stent continually since October 2006. It is changed every 3 months. I can't go without it because of the condition of my common bile duct - as soon as the stent is out it starts to close. I definitely understand the frustration of repeated ERCP's and stenting and I too have a pancreatitis risk. I have had pancreatitis 2x and other complications 1x so I've had 3 bad experiences out of 9 for 33% with less than pleasant outcomes.

I think it was about six months after diagnosis that one of my dr.'s started talking about this surgery and it freaked me out. It is a big surgery and while I don't like being a frequent flyer at the hospital I just didn't feel the surgery should be done when a little piece of plastic was doing the trick. Fortunately, that dr. was alone in his opinion and my endoscopist said no way. I also think you have to go to a tertiary care center to be evaluated for it and that it isn't performed that often anymore but I could be wrong.

Jeff, goodluck with your continued stenting and Genevieve I hope you get the info you need to make a good decision and move forward either with the stents or surgery.

Darcy

So, what is the longest span of time you have been continually stented? He also said I probably needed to have the stent in continuously for at least 6 months. Maybe you just haven't had it in continuously long enough?