Surgery or No? Questions For Those Who Have and Have Not

[Guest guest]

Question for everyone.

Some of you have had the major surgeries, and some of you have not.

May I ask why some of you chose to have the surgery you had, and why

some of you have not chosen to have surgery?

If you do not have surgery, what does that mean in regards to quality

of living, prognosis, etc?

If you have had the surgery, was it worth it? What was the success of

it and how has it changed your life?

Eileen

[Guest guest]

Hi Eileen, I have had tons of surgery and would do it all over again

in a heart beat. It has not been easy at all. It has been a major

stressor for my family and myself. Yes there have been complications

and there will continue to be. Nature of the beast. However, I can

do so much more then I could before. There was a point in my life

where I could barely walk. I have not worked in over a year but hope

that ends soon. I can now take care of my children they way I feel a

mother should.

I think for me the big key was that I have a fantastic surgeon who

has and continues to fight for my well being and I have total faith

in him. I do still have limitations and get tired very easily and I

dont know if that will improve in time or not. I hope so. I do have

some residual pain but will see the surgeon on wednesday and discuss

my options with him. A year ago at this time I no future and now I

do.

I dont think sugery is appropriate for every one. That is a personal

decision that one should not take lightly in the least. One needs to

weigh all the options available and understand them 1000% before ever

jumping into anything. In my life, it was the right decions and I

have absolutely no doubts about that what so ever.

I hope this helps.

(SC)

[Guest guest]

Hi ,

Sorry for all the questions to everyone, I'm trying to learn more and

perhaps other new people to the forum will benefit by it too.

I remember reading you had a whipple?

Would you consider yourself an exception to the rule, as far as

success with surgeries go?

Also, what form of pancreatitis did you have?

Eileen

[Guest guest]

Hi Eileen. Please feel free to ask anything you wish. That is truly

the only way we will learn. I feel that knoweledge is power and we as

patients need to have as much power over our bodies as we possible

can. So many people just surrender to what the docs have to say. Docs

are people too and can make mistakes. We need to know as much as we

can. I cant tell you how many times how many times I have taken

suggestions to my doc from this group and he has said " ok lets give it

a shot " .

I have had a transduodenal sphinteroplasty, a Beger procedure; which is

an organ sparing whipple' and the tp-auto ict all in 11 months.

Becuase of the multiple surgeries in such a short time span I have had

complications. Like I said its the nature of the beast. I am

definetly far better off now then I was a year ago at this time.

The cause of my pancreatitis is really kind of vaque. I have had

attacks of back spasms all my life. I say my back because when they

hit it was like giant jaw had chomped down on my torso; from my sternum

around the right side all the way to my spine. I had goen to scores of

docs and have been told everything imaginable. When I had my first

ercp I had the same pain. During tha tprocedure they discovered I had

SOD and ductal tortuosity. My main pancreatic duct had a roller

coaster look to it. I saw the films. My problems all came to a head

after having a lap chole. I do not regret that either, I have no

regrets who so ever.

I dont know if I am an exception to the rule. I am not sure what rule

you are referring to. I have always been one to bend the rules

anyway...LOL. I hope this answers you questions and like I said

earlier, ask what ever you wish.

Warmly,

[Guest guest]

Thanks . :-) I sometimes feel like I am bothering people

with all my posts, but to me it seems there are more answers here

than in my doctor's office. And right now, I'm not well enough to do

anything but read, watch TV and bother you people. :-p

I asked if you were an exception to the rule meaning, do you think

you were luckier than most in the outcome of your surgery (feeling

better, etc?)

I also wondered how you and your doctors came to the decision to go

with these surgeries instead of just letting the CP take it's course

as some people do.

Thanks so much,

Eileen

> Hi Eileen. Please feel free to ask anything you wish. That is

truly

> the only way we will learn. I feel that knoweledge is power and

[Guest guest]

--- In pancreatitis , " whitefalconsgoddesswear " >

> I asked if you were an exception to the rule meaning, do you think

> you were luckier than most in the outcome of your surgery (feeling

> better, etc?) I also wondered how you and your doctors came to the

decision to go with these surgeries instead of just letting the CP

take it's course as some people do.

>

-----------------

If I were lucky, the sphincteroplasty would have been successful. I

had the lap chole because of pain. It got worse and for almost a

year I went round and round with these docs. Docs that have known me

professionally for years. I had an ercp and the manometry was well

over 100. We went back and forth between the sphinteroplasty and a

whipple. I was absolutely adament I did not want a whipple. Had

another ercp and it had worsened. So in Oct of 03 he did the

transduodenal sphinteroplasty. that is when he held my panc in his

hand and found it to be completely fibrotic. A condition that would

take decades to occur. He did not tell me this fact until 3 months

after that surgery when I had an acute attack at work that landed me

in the hopital for 10 days. More ercps, they found significant

ductal changed in the few months since the last one. A j-gtube

placement. The surgeon and the pancreatologist conferred. That is

when they told me my pancreas would never get better and would only

worsen. I was told then that it would have to be removed entirely

and suggested the autologist islet cell transplant while I still had

viable islets.

I was sent to OH and the surgeon there said I was not sick enough.

So back to SC, still sick as a dog and the doc still wanted to do the

whipple, I again was adament no whipple. He called me one afternoon

suggesting the Beger, and organ sparing whipple, less stuff removed,

less recovery time, less anastomosis less risk of complications. I

agreed. I was out of work for about 3 months, went back and couldn't

last 3 days then resigned my position. The surgeon here went to the

mat for me with the surgeon in OH insisting I needed the tp-ict.

From what I understand he literally fought for me. So NOvember of 04

I had it.

I guess the luckiest part for me was having a surgeon who believed me

and wanted me well. He and I have known one and other for a long

time prior to my ever getting sick. There have been times when we

hated each others guts and times we were good friends. Ohh and

before I ever aggreed to the total I wanted Dr. Cotton's

opinion of my case. His words " take it out now take it out later, it

has to come out " . My surgeon and my panreatolgist (Dr. Hawes

Cottons' associate) are the ones who pushed for the islet cell

transplant and felt it was better to have the surgery more sooner

then later as my condition deteriorated very rapidly after my first

ercp. I also know Hawes and Cotton some years ago when I did

recovery of their ercp patients. Hawes better then Cotton.

I am the type of person when I make up my mind thats it. No more

hemming or hawing. I did not want the whipple and had they done the

Beger sooner perhaps my condition would not have deteriorated to the

point of ductal changes and clubbing in 5 months. I have seen the

films, I know first hand. Maybe because they knew me professionally

as the RN that cared for so many of their patients and knew I was not

a drunk or drug seeker as so many people here have to tragically

face. Maybe that is the luckiest part of my story. I dont know.

I have had some pretty rough complications. Last May I had an

incisional hernia down the entire length of my scar (which is from

above the breastbone which they had to crack down to below my belly

button). 2 weeks after discharge from the surgery the wound ripped

open again and I developed a strangulated incarcerated hernia that

involved almost my entire small intestine, boy did these surgery

hurt, a lot worse then the total. Now it appears I may have some

intense adhesions. With all the abdominal manipulations I have had

its not altogether unexpected. So I may have another surgery, I dont

know, will find out on wed.

I sure have rambled on haven't I. Hope this answered your

questions. I think I kind of forgot what you have asked...LOL. If

there is anything else, feel free. I aint got nothing to hide, well

not much.

Warmly,

[Guest guest]

Wow, , that is some ordeal! But through it all, your struggle

gives hope of recovery even when it's hit a bump..or two..or three. ;-)

I can't believe the OH surgeon did'nt think you were sick enough. How

sick does a person have to be. One look at a CP person and I'd be

sold, that's for sure.

Was it Dr. Sutherland, the surgeon I hear so much about on here?

Eileen

[Guest guest]

Hi Eileen,

I cannot comment on pancreas surgery specifically but I do have

experience with general abdominal surgery. Maybe my point of

view may give you food for thought.

In my experiences, surgery is an extremely risky enterprise that

shouldn't be thought of as " routine " or inconsequential.

Certainly, my two abdominal surgeries were done as

emergencies and that may have accounted for my slow recovery

and high complication issues but I whole heartedly believe that I

will never willing " elect " to undergo surgery again. In my case, it

will be a last resort option only and even then, I will have to

consider whether I should just accept the inevitable and let

nature take her course.

I cannot even begin to explain the trauma that surgery to the

abdomen entails - both mental and physical. The indignities, the

helplessness, the pain, the self-hating, the dependency on

people who could care less about you as a person.......it is

something that shouldn't be entered into lightly.

That being said....if there is a good reason for electing to

undergo surgery...like a fairly reasonable expectation that

surgery will cure the ailment, then it may be worth pursuing.

However, a surgery as a " let's see what we can find " idea may be

more of a risk than a benefit. You have to consider that once a

body is insulted like this, it NEVER recovers completely...you may

fix the immediate problem (in my case the infections etc) but you

are left with long term ramifications that will never go away. It is a

hard call for me case, to decide if it was worth it...or if I would go

through it knowing what I know now.

No doubt there are times when surgery is called for and you

have to do what you have to do (like appendicitis etc) but you

really have to be cautious if you consider surgery for " iffy "

reasons....especially if it is " only " for pain control. In cases of

pain, there is a good chance that it can be managed with

medication or less invasive means. Why risk making things

worse? especially when there is no high expectations of the

surgery making things better.

It is a hard call, but I feel so strongly about this that I am willing to

speak my mind without temporizing too much. However,

everyone is different and recovery and trauma from the surgery

may not be as severe for another. The best bet is to find a really,

really good surgeon...one who will stick by you no matter what

and for the long haul. The surgeon that is taking care of

is unique and special. In my experience, most surgeons dump

you after the six week follow-up period, no matter how you are

feeling at the time - afterall, in their minds, the surgery was a

complete success. It doesn't matter how you feel, if the data are

showing that you are " cured " .

The upside to surgery is that if it cure's you, it will be a joy that no

one can even begin to imagine. And it is natural to want to take

that risk to try to feel normal again.......but, to be realistic, there is

also the chance that you could end up feeling worse........

In your case, I suspect that you have other options at this time

before you consider surgery. Your physicians need to figure out

exactly what is going on with your pancreas. They have now ruled

out the gallbladder as being the culprit, so now it is logical to go

to the next step. They also may request that you give it some

more time to heal, unless you are in so much distress that you

cannot live with it. Then they need to aggessively investigate and

treat the problem...of course adquate pain control is a must

during this investigative step.....

laurie

[Guest guest]

Laurie, excellent post, thank you.

I had not thought about giving the pancreas time to heal after the

GB surgery. I assumed once it was out, the pancreas would not bother

me any longer. I wonder now how long it would take to calm down?

I agree with you about surgery. It is so traumatic to the body, any

surgery, let alone the kind that invades the organs of the gut. I

have no idea how the plastic surgery junkies do it.

I also do not do well with anestesia (sp?) and DREAD any kind of

procedure. I put off having my GB out for years because I hated the

idea of surgery (a decision which may very well landed me were I am

now)

Eileen