Re: sphinteroplasty and my opinion

[Guest guest]

Hello,

I have hesitated much in responding to this thread because I do not

want to say anything that could possibly have a negative impact on

someone, or cause someone to elect to not have a surgery they need. So

please keep that in mind when you read this, this is nothing but a

non-medical professional's opinion and belief and it could be and

might be totally bad, dangerous, wrong, or silly.

I elected to have a total pancreatectomy and islet cell transplant

when it was clear to me that my pancreatitis would never end. 15 or 16

attacks in less than 3 years made that clear; 8 in 4 months most

recently showed me it was accelerating and I was certain if nothing

was done it not be long before I would be rendered to sick to live the

quality of life I will accept.

I spoke to surgeons who treat all manner of GI tract problems and

other such surgerical procedures. They wanted me to undergo a

sphincteroplasty. I spoke with doctors that do nothing but treat

pancreas, and liver problems and they told me that in a significant

amount of people who undergo procedures like sphcinteroplasty,

puestow, and to a lesser degree partial pancreatectomies (whipple,

distal) that the surgery is NOT a permanent fix. It merely buys you

some time, between 6 months and 2 years on average, before attacks

resume.

Since they can do the total pancreatectomy where I live they suggested

it to me. It is risky. The benefits of the other surgeries is that you

do not risk complete and utter diabetes. You in fact will probably not

have any issues with insulin production at all. With a pancreatectomy

that's it, its all gone, and so is your insulin production. The islet

cell transplant is the blessing, and if it works then you are good to

go. But it doesn't always work, and no one knows how someone will do

40 years down the road, and actually there haven't been that many

people to have it to have a good sense of how people do 15 years down

the road. But so far signs point to the patients remaining stable with

their level of insulin production as to the level it settles to at

about 8 months after the surgery.

Ok so I am rambling. But it is my opinion that unless there is the

clearest proof that the sphicteroplasty will repair the problem, I

would not consider it. In my case there was no indication where the

problem was at all. I did not have a divisum, I did not have stones or

any kind of blockage. My pancreas simply decided to destroy itself. So

for me the only clear thing to do was get all the islet cells I could

while I had them and get that utterly destructive organ out of my body.

I have read on this board and some of the other pancreatitis boards

many many tales of multiple surgeries and eventual return of

pancreatitis. Any surgery on the pancreas is incredibly painful and

difficult and has high risk. Who wants to have to face several surgeries?

Please know this is all my opinion. I am NOT a medical professional. I

do not have personal experience with the sphincteroplasty. I could be

so wrong its not funny. But this is what I believe and felt compelled

to share.

Whatever you do, do so with all the facts and multiple opinions.

When/if you undergo any surgery, do so only if you feel your surgeon

is highly skilled, and do so only after carefully weighing all your

options.

Good luck to you,

Bert