Confusion Re: Surgical Treatment Options

[Guest guest]

Doc,

You wrote, " This is exactly what I was asking about a few days ago.

The relief from the pain after the partial removal of the pancreas

invariably doesn't last very long.... I had my wife, (the patient

with CP) read these posts and as a result we are more confused than

ever as to what to do now. "

From the hundreds of people I have spoken to that have had a Partial

Pancreatectomy, whether a Distal (Tail) or Whipple (Head) do

eventually have severe symptoms of Pancreatitis. This is not always

true. It seems that the people that have had a Whipple have done

better than those with other partial surgeries.

One thing to remember is that Pancreatitis is a progressive,

deteriorating disease. Removing what appears to be the disease

portion of the pancreas is generally only a temporary measure, as

the primary cause of the damage has not been fixed. Most of the

time, it hasn't even been identified. Most of the procedures to

repair the Sphincter of Oddi seem to be temporary, as do stents.

Eventually excessive damage has occurred to the pancreas warranting

removal of the disease portion, though the cause still exists.

When I had the Distal Pancreatectomy, August 4, 1999, my surgeon did

tell me that this would only buy me time. I asked why they didn't

remove the whole thing, at that time, then. He said that the

mortality rate was too high. The TP/ICT was reported to

be " experimental " , so I did not know that was a choice.

Today, the head of my pancreas is simply a calcified rock.

I spoke with Dr. Sutherland, who asked me if I would keep a rotting

tooth in my mouth? And, of course I said, " Absolutely not " .

We

discussed a cadaver pancreas transplant. My hesitation is that he

would have to remove the residual portion of my pancreas and then

wait six months for the surgical bed to heal prior to the

transplant. And, I cannot bear having another surgery, much less

two. But, this does makes sense. After removing an infected tooth,

they will not immediately place a tooth implant, either.

The transplant would cure my diabetes, but when a pancreas has been

allowed to calcify into a shriveled rock, the disease has infected

all of the surrounding organs, particularly the spinal nerves that

innervate into the pancreas. This results in neuropathy, which would

not be reversed with the removal of the pancreas. At this point,

only long term narcotic use will alleviate the daily pain that I

live in. Or, possible blocks.

The other issue is that many people, including myself, had a

Splenectomy at the time of the Distal Pancreatectomy. The spleen is

a very important organ. And, in my opinion, all of our organs are

important or God would not have given them to us. It is the removal

of the spleen that causes the chronic anemia problems.

Back to the question re: loss of taste after a Partial

Pancreatectomy. If the spleen was removed, that would be the

causative factor for the post-operative loss of taste, not the

pancreas, per se.

If I had it to do over again, I would do whatever I could to not

allow my healthy islets to be thrown in the trash with my disease

pancreas, but transplanted into my liver. To me that is a no

brainer. If I knew what I did today, I would also have the TP/ICT

immediately after diagnosis.

At, any rate, Doc, you are understandably confused. Hopefully,

through hearing the stories of others, and becoming more educated

about options, we can all make more informed healthcare decisions.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International