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Help!!! I feel this same old feeling that I had a couple of months ago. I was

told by my Dr. at Hopkins that there was nothing he could do for me. I moved

on and then found Fox Chase Cancer Center in Philadelphia. I have just spoken

to my surgeon and he has told me the great the great news that he too has come

to a road block. He told me that I need the Puestow procedure. He was going

to send me out to Indiana to have the GI group out there put the large stent

that I need to be put in. The DR. that invented this procedure out there has

just retired. My surgeon wants me to go out to the University and have them put

the stent in and then he would do the rest of the procedure here. The stent is

the issue because it is so large. My question to all is there anyone out there

who had this procedure done? If so has it worked? Then the next question is

where did you get it done if it worked. I pray that someone out there has had

this procedure and can help me..............lots of hope and prays right now

Paget

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In a message dated 6/25/2003 4:07:37 PM Eastern Daylight Time,

Pag4024@... writes:

>

> Help!!! I feel this same old feeling that I had a couple of months ago. I

> was

> told by my Dr. at Hopkins that there was nothing he could do for me. I moved

>

> on and then found Fox Chase Cancer Center in Philadelphia. I have just

> spoken

> to my surgeon and he has told me the great the great news that he too has

> come

> to a road block. He told me that I need the Puestow procedure. He was going

> to send me out to Indiana to have the GI group out there put the large stent

>

> that I need to be put in. The DR. that invented this procedure out there has

>

> just retired. My surgeon wants me to go out to the University and have them

> put

> the stent in and then he would do the rest of the procedure here. The stent

> is

> the issue because it is so large. My question to all is there anyone out

> there

> who had this procedure done? If so has it worked? Then the next question is

> where did you get it done if it worked. I pray that someone out there has

> had

> this procedure and can help me..............lots of hope and prays right now

>

> Paget

>

>

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In a message dated 6/25/2003 4:07:37 PM Eastern Daylight Time,

Pag4024@... writes:

> My question to all is there anyone out there

> who had this procedure done? If so has it worked? Then the next question is

> where did you get it done if it worked. I pray that someone out there has

> had

> this procedure and can help me...

Hi Paget, I was prepared for the puestow surgery at IU. I had the stints

placed in my small duct starting out with small stints and then increasing to

larger ones. As I said before the last stint is the metal stint and it is very

large and the stint of no return. When the metal stint is placed in the small

duct the only way it can be removed is by surgery so just before I was ready

for the metal stint my doctor at IU told my husband that I would continue to

have pain even with the puestow surgery. I then refused the puestow surgery and

decided to have the total pancreatectomy and islet cell transplant. My

thinking was I cannot live with anymore pain so I wasn't going to put myself

through a surgery that would not cure the pain. The total pancreatectomy and

islet

cell transplant would remove the pancreas and transplant my own islet cells to

my liver and then I felt I had a better chance of being pain free and not

risking the chance that the puestow wouldn't correct the pancreas disease and

therefore I would continue to live with chronic pain and attacks not to mention

not being able to eat.

While I was preparing for the puestow surgery I was very wary of it so I

asked the surgeon who was from IU who was going to do the puestow on me to give

me

names and telephone numbers of people who had the puestow surgery. I called

each and every one of those people and they were not in very good shape. Many

were on heavy drugs due to the pain they continued to have. Some were

recently out of surgery so they couldn't give me a good response yet. Once I

made

up my mind to decline the puestow and go ahead with the pancreatectomy and

islet cell transplant I never contacted the people who had the puestow again to

find out if their surgery was a success.

Andre, a member of this group had the puestow and he didn't have success with

it. I am sure that some people have success with the puestow but if I were

you I would research as much as I could before I let someone operate on my

pancreas. You sound very frightened and I understand that. I was very scared

also.

Hopefully Andre will read your post and will be able to give you more

information about the puestow. I am sorry that I can't be more positive about

the

surgery but just the preparation for me didn't help and I think I should have

been pain free with the large stints in my small duct. I hope that you are able

to learn as much as you can about the puestow surgery before you have it. I

wish I could help you more. Good luck. Shirley

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> He told me that I need the Puestow procedure. He was going

> to send me out to Indiana to have the GI group out there put the

large stent

> that I need to be put in. The DR. that invented this procedure out

there has

> just retired. My surgeon wants me to go out to the University and

have them put

> the stent in and then he would do the rest of the procedure here.

The stent is

> the issue because it is so large. My question to all is there

anyone out there

> who had this procedure done? If so has it worked? Then the next

question is

> where did you get it done if it worked. >

>

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