pancreas divisium

[Guest guest]

I tried to post this yesterday, but I don't think it worked.

Of all you pancreas divisium folks out there - how much relied did

you get from stenting? Days? Weeks? Months? Years?

Thanks,

Kim Sauer

[Guest guest]

Oh boy Kim,

You have asked the million dollar question! One that I have been

researching for over six months.

Here is my experience: The initial stent was a miracle. I was

completely blocked and was in severe pain for 8 weeks before I

was able to find a doctor who knew what was wrong. I ended up

having really bad acute pancreatitis from the first stent

placement so I did not see an improvement until three weeks

later. Then it was night and day difference. The second stent

again caused a slight worsening of symptoms the first two

weeks after the ERP then was good for 5 weeks - I was able to

cut down of pain meds and had the desire to do more stuff. The

last 10 days or so the pain level went up again (possibly from

getting clogged?). Then the doctor decided to not go on with the

stenting for reasons only he knows..... Since then my pain levels

have been pretty severe (but not as bad as when I was totally

obstructed) but I have been able to gain weight, although the

pain levels and nausea levels have increased significantly. I am

not sure if my pain increase is because I wasn't allowed to

continue with the stent protocol, or that the stents caused

damage or if it is from something totally unrelated to the

pancreas. My opinion is that the stents were working, but I

wasn't given a chance to complete the series to be able to know

for sure.

Literature suggests that those who have more than one

documented case of acute pancreatitis with pancreas divisum

have very, very high success rates with stents: Complete or

significant pain relief for many years. Those that have signs of

chronic pancreatitis or just have pancreatic pain without any

documented CP or AP are less likely to have a good response

(less than 50% have pain reduction).

For my particular case, I am happy that I chose to do the stents

and a friend of mine is slowly convincing me that I need to find

another endoscopist that will allow me to give it another try. It all

comes down to the fact that you are damned if you do and

damned if you don't: That is, if you are obstructed and you don't

do anything, you risk more damage; but if you are not obstructed

and you do stents, you risk more damage; and the only way to

tell if you are obstructed is to try the stents. If you get relief, then

you were obstructed and the stents were the right choice. If you

don't get relief, the doctors are hesitant to go on because there is

high concern that the stents will cause more damage than good.

So it is a very very subjective decision based only on how you

feel once you try the stents. If you feel bad enough that life

cannot go on as is, try the stents. If they make you better, even

for a short period of time, you know you are on the right track and

you may want to continue with the treatment. If you don't feel

better after the first stent then you have some very hard decisions

to make....like, do you go on in the case that you only need more

time and bigger stents to make things better or do you stop now,

before you make things worse?. It's a very frustrating disease

with hard decisions to make based on very controversial

opinions and experimental information. We are the guinea pigs!

Laurie

Good Luck and email me if you would like more information

about what I have found concerning all of the controversies

surrounding pancreas divisum. I have about a 100 reference big

database concerning all of this information and I am slowly

starting to develop a algorithm to chart out were controversies

enter into the picture and where opinions diverge and how to

determine what may be the right decision making track based on

many different factors concerning an individual patient.

[Guest guest]

In a message dated 3/10/2004 1:10:00 PM Eastern Standard Time,

ksauer@... writes:

I tried to post this yesterday, but I don't think it worked.

Of all you pancreas divisium folks out there - how much relied did

you get from stenting? Days? Weeks? Months? Years?

Thanks,

Kim Sauer

Hi Kim, I was stinted seven times and I had no relief from it. In fact I

believe that stinting makes the pancreas worse. Stinting might work for some

but

for me it made my condition much worse. If you are having stinted done I

hope you are one of the ones that it helps. Good luck. Shirley

[Guest guest]

I too have pancreas divisum but I also have an annular

pancreas. I have had stents and many ercp's many eus and far too

many celiac plexus blocks. All of the stent I had only made things

worse, it had to be removed I could not take it, although I had post

ercp pancreatitis it never resolved with the stent in place, once

the stent was remove and a sphinterorotmy (fancy word for the

opening the duct the stent goes in) I did have a little better month

and a half, by then it didn't matter to me what they did for me

nothing helped. I now have an intrathecal pump (pain pump) that

helps some, but I still need breakthru pain meds about 3 times a

day. I think right now I am having an acute episode, related to

stress. We are having alot of family problems right now.

Atwell LPN