Re: Any Experience with progressive stenting

[Guest guest]

Hi,

I had a specialist who wanted to do monthly stenting for at least a year

in hopes to keep the pancreatic duct scar in an open position. I have

had an attack with every ERCP except one. While the stents do provide

short term relief, I didn't feel that this type of surgery was best for

me because scar tissue only leads to more scar tissue in time. It

seemed that this type of therepy was not all that it was cracked up to be.

I consulted another surgeon who agreeed that he didn't believe in this

type of therepy/surgery either. An ercp when needed was acceptable, but

multiple stenting was out of the question as far as he was concerned,

and me too, as it only sent me into a pancreatic attack requiring

hospitalization and that only made the pancreas worse off than before

the attack.

The choice of course is yours to make. Everyone is different and takes

differently to different surgeries. I would consult another pancreatic

surgeon first before I committed to this.

This is only my opinion.

Sandy

California

nwisowaty wrote:

>I am scheduled on Jan 22nd for an appointment with Dr. Lehman. In

>February of 2003, when my last stent was placed, he said if my duct

>didn't stay open then he was going to do progressive stenting. First

>they put in double stents, six weeks later they take those out and

>put in three and so on until they have enlarged it five times the

>size. Then they will do surgery to restructure the duct and cut off

>the bad scared part. I get so sick from the stentings that I'am

>scared I won't make it to the end. All I want is to be better and

>not have to take any pain meds. Has anyone out there had this

>procedure/surgery?

>

>

>

>

>

>

[Guest guest]

Hi,

I just recently finished my series of stents - although I didn't

make it through the whole procedure (only had two put in instead

of three). I did not have what your are describing as far as two

stents put in at once, but mine was explained to me as

" progressively " stretching the duct with ever larger stents. My first

stent was the smallest possible and it gave me incredible

relief!!!!! It took about 4 weeks after the procedure to feel really

well but I always continued to have what I call the background

pain. By the last week before the stent was replaced - I had

increasing pain (from it becoming slightly clogged, I imagine). I

was not allowed to go on with the series because two thirds of

the way through it, the Dr changed his mind and determined that

there was nothing originally wrong with my pancreas and that to

continue stenting would only lead to the problem that he thought

he was correcting. At this time, I am almost three weeks past my

last stent and the pain from that procedure is receding. I am

hopeful that eventually I will be able to determine if the stents

worked - by having lasting and significant pain relief. And I am

keeping my fingers crossed that the blockage will never recur. If

I had to do it all over again, I definitely would do the first one -

relief after it was significant. The second one gave me not as

much relief and slightly increased my night pain. So my

recommendation based solely on my experience is to try at least

the first one. If it worked, I think it will be obvious. If it doesn't they

can go in and take it out and hopefully offer you another option. It

is hard to say in your case because you already know that the

procedure is hard on you. I guess the question is: " how much

relief did you get from the other stents? " And if it is a matter of

getting relief but only temporarily because the duct wasn't

stretched enough -then you may want to give the stretching

series a try. It just has to be remembered that although stenting

is relatively conservative, there is evidence that they can cause

scarring and inflammation themselves that can lead to more

damage to the pancreas. It is a rock and a hard place type of

thing when you are dealing with a benign obstruction.

I cannot offer you any experience about the surgery that you

mentioned though......

Laurie

[Guest guest]

Okay, before I start, let me just say this only what I was told on Tuesday by

Dr. Lo at Cedars Sinai. This pertains to my particular case so take it with a

grain of salt. On Tuesday, I found out that I have autoimmune pancreatitis with

pancreas divisum. The dr. recommended getting my triglicerides under control

and treatment with prednisone. My husband wanted a quick fix to my problems and

wanted to know why the dr. couldn't just go in and attach the pancreatic duct

the is not attached and then have me be fixed. The dr. responded that if he

went in to do anything it would be the least invasive thing possible which would

be to put a in the minor papilla (sp) and try to help it drain the pancreas

better. He would remove the in two weeks because of the chance of infection.

He also stated his policy is a min. of a 2 day stay in the hospital when he does

an ERCP. Also he said this would and should only be done during a quiet period

of the pancreas attacks. This would hopefully be to help prevent an attack.

This was news to me because the one ERCP I had done before (Aug. 2002) was done

while I was in pain, and it was on outpatient basis. Of course I had to go back

to the hospital 2 hours later, even after they had given me Demerol prior to

sending me home I was dying from the pain! I was given more Demerol, which did

nothing for the pain, until they gave diladid (sp). The problem with the

diladid was it would make stop breathing. Has this happened to anyone else?

Any way the reason I responded was the Dr. Lo said that he only do 1 ERCP with

stenting and if that did not help he would do anymore. He also stated that he

really would prefer not to do this, because he says with autimmune pancreatitis

the stenting probably wouldn't help anyway. I have never had the stent done,

and this only what the doctor told me in my personal situation. I think it

varies by person to person on what would be the best for them.

Simi Valley, CA

Re: Any Experience with progressive stenting

Hi,

I had a specialist who wanted to do monthly stenting for at least a year

in hopes to keep the pancreatic duct scar in an open position.

[Guest guest]

Steve wrote:

> (This is my first time reaching out. I hope to be able to share my experience

with this disease, but more importantly, to listen and learn how others are

coping!)

From late August thru October I had 4 ERCP stenting procedures at Century

City Hospital in Los Angeles. The stenting procedure using ERCP was

explained to me as a conservative approach. The result with me has so far

been one of improvement, however, my pancreatic duct remains inflamed

and I continue to experience the chronic pain. My hope is to have additional

ERCP procedures and see how my disease responds.

Dear Steve,

Thank you for sharing your experiences with us. Stenting procedures have

brought tremendous relief to those patient's whose individual circumstances

can benefit from this procedure. You will learn by reading the different posts

that what works for some doesn't work for others, it just depends upon what

your individual physical sitation is. Although we all share similar complaints

of

abdominal and back pain, discomfort, eating problems, etc., each of us has

diverse problems which need to be treated separately.

I hope your next stenting procedure will be the one that brings you the relief

you're looking for. Meanwhile, take advantage of the website to listen and

learn and make new friends with people who share your difficulties and

understand what you're going through.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for consultation with a medical

professional.