Need Good DR, please

[Guest guest]

Thanks Martha

What about Mayo clinic? I see there are various offices, who knows

of any of them or another good doctor ... it seems from the various

responses everyone is telling me I need a second opinion but I don't

have any names yet?

anyone?

> > And, can anyone explain to me the options besides a stent if my

ducts

> > are blocked...my dr will not do a stent because I already have

> > pancreatitis and doesn't want to risk it again

>

> There is percutaneous transhepatic cholangiography-PTC. They can

> inject contrast via a 21g needle from the ribcage to liver. In some

> cases they can place a stent from above when they can't do it by

ERCP

> from below. PTC may allow the placement of external drains so that

the

> bile has somewhere to go, into a collection bag you wear on the

> outside. The ducts need to be not too badly fibrotic, or rather

> dilated, for PTC to work. It's done by an interventional

radiologist,

> and you would be admitted at least overnight. Don't know if this

would

> help your condition.

>

> My experience with it wasn't good, but others have found relief

from

> it. In my case the ducts were too fibrotic, so hard they couldn't

get

> a needle in. They tried for 4.5 hours and stuck me a dozen times. I

> was out cold and on a respirator with anesthesia. I got a hematoma

in

> the liver from either the PTC or the biopsy needle creating a

> arterio-venous shunt, and was painful for days.

>

> I only saw a local gastro when I lived in Bethesda. Others, I'm

sure,

> will answer regarding med centers and doctors. Go for the docs with

> the most experience- you need highly specialized care as PSC

advances.

>

> Martha (MA)

> 43, UC 1979, PSC 1992

> Bethesda/Kensington MD, 1993-95, and how I miss the spring there!

>