Re: Can anyone please help?

[Guest guest]

In a message dated 7/21/2004 6:54:00 PM Eastern Daylight Time,

shortstack11@... writes:

I agree that a better specialist might be able to help.

Hi Jen:

My name is Shirley and I had my pancreas removed and the islets transplanted

to my liver in 2000. I don't have any pancreas pain but I am a mild

diabetic.

Dr. Sutherland, who is the best surgeon for this type of surgery in my

opinion, operated on me. He works out of Fairview Medical Center in Minn. MN.

If you need any information about the surgery please let me know. By the

way I had pancreas divisium also. I wish you well. Shirley

[Guest guest]

Hi Jen,

I know that you are probably sick of hearing from me but I feel

that you need to hear from someone in a similar situation. My

understanding from my doctor is that there is rarely a minor

papilla that is too small for some kind of therapy, If that is truly

the case, then the only option may be surgery, where the splice

the duct into the duodenum. In my case, I had one of the

smallest that this endoscopist had seen in recent years but he

first cut the papilla, then forced a dilater into the duct, finagled

around and finally put in the stent. Granted, that caused a mild /

to moderate case of pancreatitis but he did eventually get in. In

the literature, I have read that there are cases where the duct

cannot be accessed but that is usually because of twists, bends

or other abnormal anatomy. Rarely (although it is mentioned) is

it because the duct is too small. I say, it is time that you saw

someone who is the utmost expert in this field. It is clear that

your case is the one in a million as far as difficulties....you need

that one in a million doctor to take a look at you too. Otherwise,

like you said....you are too young to take this passively.

As far as pain clinics are concerned.....I think that you are going

to find that they will be your best friend. It is almost a certainty

that you will have some kind of pain with this condition, no matter

what procedure you eventual have. It may be time to start looking

into that and using their expertise to get the relief, care and

diagnosis that you need.

Just my two cents worth!

Laurie

[Guest guest]

Laurie,

I'm not sick of hearing from you. I really appreciate your advice

and knowledge.

As for my duct, my doc didn't say it was too small. He said that it

wasn't dilated and flat. So in an ERCP they can't find it and it

doesn't show up on tests. So he's hoping maybe it will show up this

time on the MRCP and then they would know where to access it.

I agree that a better specialist might be able to help. That is why

i'm trying to get my doc to send me to the Mayo clinic in Arizona.

They apparently have docs that deal with pancreas divisum.

As far as the surgical component, he said since they can't see or

find the duct so they would have to cut my whole pancreas open to

find it. He doesn't want to do that invansive of a surgery, since

he's not even sure if it will do anything. It's just very

frustrating. We don't have secretin or EUS available in Canada

yet. So I don't know what else he will do.

I am now on the wait list for a pain clinic here. It will take over

a year to get in.

Thanks again for responding. I know you can relate a lot to where

i'm coming from. Jen

[Guest guest]

Jen: I don't have anything new to offer you here but just wanted to

let you know that I hope and pray everything works out for you.

Laurie's advice was good (and always is!!) in that it seems to me to

be time for a new doctor - that " one in a million " as she said. I

can tell you that your symptoms sound pretty " classic " to me as

meeting symptoms of cp but I'm not a doctor either. Please let us

know how you're doing ok?

love and prayers

[Guest guest]

Jen,

unfortunately, pancreatic divisum can cause chronic pancreatitis and if

it hits you, you have to learn how to accept and deal with it. I started

having problems with my pancreatic divisum when I was sixteen. I'm now

34 and had to quite working and go on disability. I fought it really

hard though. There are some surgeries they can try, but there is no

quarantee that they will solve the problem. Some of them have made the

situation worse for some patients, so surgery is a big step. I know you

wanted us to tell you that there is a solution, but unfortunately, the

doctors just don't know enough about chronic pancreatitis to cure it or

even just keep the disease from progressing. About the only surgery

that could be considered a cure it the TP/ICT surgery (removes pancreas,

and transfers your islet cells from your pancreas to the portal vein in

your liver). The best doctor for doing this is Dr. Sutherland in

Minnesota. If you want his contact information, just send a post to the

group requesting it and someone will send you the info. But again, this

surgery isn't a 100% guaranteed solution. It works for some and not for

others and they don't know why or how to predict if it will work for a

person.

All you symptoms certainly do sound like pancreatitis and if this doctor

starts to waffle on that diagnosis, I'd go see another doctor,

preferably one who specializes in the pancreas. Usually those are GI,

though not all GI's are pancreas specialists. Sooner or later, most of

us have had to deal with chronic pain management as there is no other

viable solution at this time. Sorry to be the bearer of bad news.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.