Pustow Procedure

[Guest guest]

Greg,

You wrote, " Re; Puestow: I have had many doctors advise me that this

may be the best route because of the constant flare the pancreas is

receiving. "

First, of all, I apologise if this response sounds confusing, as it is

late, and the truth is the issue is very complex. It is important to

understand what the exact problem is. Each surgery is done to treat

different problems. It is more possible today to do what is called

designer surgery so that there are even more options than the

traditional Distal Pancreatectomy, Whipple, Puestow, etc. I have found

that each medical facility tends to focus on a particular surgery,

too. It seems as though there are as many opinions as there are

pancreatologists and patients. One of the most controversial surgical

procedures is the Total Pancreatectomy and Islet Cell Transplants.

This procedure done early after the initial diagnosis has been very

successful in eliminating pain and preventing diabetes. But, as I said

it requires early recognition of the disease and early intervention.

Even then, there are risks. What has to be done is to weigh these

risks against the progressive debilitation of pancreatitis and onset

of pancreatitis induced diabetes. Because this type of diabetes is so

severe and so different from the traditional Type 1 and Type 2 forms,

my endocrinologists has labeled mine either Type 1 1/2 or Type 3.

The other option is to wait and see, since any decision is such a huge

one. That choice, on the other hand, may not be the best, since the

islet cells that produce insulin are continually being destroyed as

the disease progresses. The other problem with the wait and see

approach is that the nerve cells fibers integrating into the pancreas

are being destroyed as well. This results in what is called

neuropathic pain. Removing the disease pancreas will not eliminate

this type of nerve damage. The disease pancreas has to be removed

before these fibers are involved. No one really knows what this time

frame is.

When I had the Distal Pancreatectomy I knew the tail of my pancreas

was damaged and had to go. What I did not know was that I had the

option to have the tail removed and the islets harvested and

transplanted into my liver. That option was never given to me.

Instead I went into surgery not a diabetic, I came out of surgery a

diabetic.

If I had it to do over today and was newly diagnosed, I would have a

consultation with several different pancretologist and consider each

therapeutic medical or surgical intervention.

Karyn E. , RN,

Exec. Director, Pancreatitis Association International

5th Annual Symposium on Pancreatitis: September 16 & 17, 2005

[Guest guest]

Greg,

Sorry to hear of your problems. I, too, had stones that were blocking

my duct. One was actually about 4 times the size of the duct, so had

been there a long time. After unsuccessful attempts to get rid of

them via ERCP, they tried lithotripsy (ESWL) like they do on kidney

stones. They blasted the stones and then cleaned out the fragments

with ERCP. Might be worth a try to find a doctor willing to do this

before giving in to surgery.

Thanks,

SamT

>

> Hello,

>

> I am a 29 year old male which has had idopathic CP for the last 7

> years. My doctors have found several stones in the pancreatic duct

> recently which has been causing on and off moderate pain. I was pain

> free for the last 2 years. I was referred to University of Michigan

> for evaluation and they are recommending the Puestow. Has anyone

ever

> had this procedure and results you have had in reliving the symtoms

of

> pain and recurrent attacks? It looks like this may be my best option

> since they were uncessful in removing the stones in my recent

ERCP's.

> Any advice would be great.

> Take Care

[Guest guest]

Hello Greg ,

I hope you are recovered and back at home too busy to post, but know

that you have been in my thoughts and prayers. My son has to have his

gallbladder removed now and an ERCP and EUS also. Dr. will

probably do his procedure. We continue to pray and live day to day.

Best wishes for your recovery.

I was referred to University of Michigan for evaluation and they are

recommending the Puestow. Has anyone ever > had this procedure and

results you have had in reliving the symtoms of > pain and recurrent

attacks? It looks like this may be my best option > since they were

uncessful in removing the stones in my recent ERCP's.

[Guest guest]

They recommended the same procedure for me. It depends on what

source you look at, but the success rate is anywhere from 60%-90%. The

risks associated with it are low. Although it doesn't reverse the

damage it can prevent further damage because it provides a way for the

trapped enzymes to be released, helping to reduce the

pain.Unfortuantely it only lasts for 3-5 years. I am on a lot of pain

killers and I went through a few really bad days with pain and the

meds weren't helping so I decided I need to give it a shot. I am

scheduled for an appoinment with the surgery clinic on June 14th so

I'll let you know if I find anything else out. When are you going to

have it? Let me know if you have any more questions, I've done quite a

bit of research on it:) Good luck!

-Annette

> Hello Greg ,

> I hope you are recovered and back at home too busy to post, but know

> that you have been in my thoughts and prayers. My son has to have

his

> gallbladder removed now and an ERCP and EUS also. Dr.

will

> probably do his procedure. We continue to pray and live day to

day.

> Best wishes for your recovery.

>

> I was referred to University of Michigan for evaluation and they

are

> recommending the Puestow. Has anyone ever > had this procedure and

> results you have had in reliving the symtoms of > pain and recurrent

> attacks? It looks like this may be my best option > since they were

> uncessful in removing the stones in my recent ERCP's.