Assessment from the Pancreatologist at Mayo

[Guest guest]

Hi all,

The Pancreatologist, Dr. Lange, that I consulted with at the Mayo Clinic called

me on Thursday night, and we had a long, interesting conversation. He had

reviewed my blood work and CT-scan of the pancreas, as well as all my

previous history and personal comments.

His assessment is that for now no surgery should be done. He feels that

since I've been able to maintain good control of my pain by the use of

narcotic analgesics (75 mg. Duragesic patch, 10 mg. Oxycodone t.i.d. for

break through pain and 600 mgs. Neurontin), that I should continue with this

treatment and not do any type of invasive surgery that would interfere with

the balance I've achieved at this point.

He was adamant that their goal at Mayo was to do whatever necessary to

help their patients live and function in as much comfort as possible. For

some, this would mean surgical intervention to repair what's damaged, in an

aim to improve a person's lifestyle. He said that in my case, he felt that any

surgical intervention could possibly make my condition less manageable and

more painful. He was admittedly reluctant to do any invasive procedures on

my pancreas, and create a situation that would possibly do more harm than

good. He said that the majority of his patients that he did surgery on were

people that were in severe, debilitating pain who had not been able to

achieve analgesic relief at even the highest doses of narcotics.

He told me that since my pancreatic function had reached the point of

burn-out, and my pain from the pancreas had diminished as a result, that he

was afraid to endanger that by going in there and upsetting the pseudocysts.

He felt that disturbing the pseudocysts now would only cause further

problems. He said that there was a slight possibility that there was some kind

of obstruction in the duct right before my large pseudocyst, because there

was so much calcification right next to it, and the duct was dialated below, but

they couldn't see any obstruction on the films. So that possibility was only a

guess, he said. He said the only way they could see what was there would be

with an ERCP, but he was reluctant to do one on me. Don't know why, but no

one wants to touch my pancreas! Probably just as well that they don't, eh?

I told him about my concern of having to remain on high doses of narcotics

for the rest of my life just to function normally. He said that I was fortunate

that I could do this, that for a lot of patients, even the narcotics weren't

enough, and that's when surgical intervention was attempted to alleviate the

person's pain. I didn't fit into that catagory. He said that no harm would be

done to me to remain on the analgesics for as long as I needed them. He did

acknowledge that I would be dependent upon them...(and then I interrupted

and said.... I already was!). Yet, if the time ever came that I didn't need

them

to keep the pain at bay, that I could be properly tapered off them with the help

of a tapering plan.

On my own, I've been trying to extend the use of my patches back to 72

hours in an attempt to see if I can handle that, and if this works, then reduce

down to a 50 mg. patch, and then slowly extend that to 72 hrs, and then drop

down to a 25 mg., and so on. I'm trying this tapering plan on my own, since

my Pain Management doctor is moving out of state, and I don't know yet who

is going to be in charge of my pain medications once he leaves. A brief

conversation with my GI about it was non-conclusive, all he said was that he

would find another PM doctor to take over with me.....yikes, what if it's

someone who isn't as compassionate as the one I had, and he wants to upset

the apple cart? I'm hoping that since Dr. Lange felt so strongly about my

success with these current dosages that he'll have some influence in his

recommendations to my GI that I keep it all going as it is right now.

The scan showed that the pseudocyst that had been in the tail wasn't visible

anymore. Conversely, the large pseudocyst in the head had increased since

the last scan and was now 6 x 6.5, and that there is also a smaller (2 cm.) in

the inferior portion of the head. So I still have two, even though one

apparently resolved, another one formed. Gee whiz....these guys never go

away!

The doctor at Mayo asked me to seriously consider genetic testing. He said

he's labeled me as Idiopathic at this point, but he does feel that some

answers could be cleared up if I took the genetic tests. His concern was for

my two adult children and the generations to come. Since both my son and

daughter have complained of abdominal problems, he thought it would be a

good idea. My son did undergo several tests a year and a half ago, even a

abdominal CT-scan, but everything was inconclusive, and since his problems

seem to come and go over an extended time-frame, he's not pursued it any

further. He's in the military and they don't seem very aggressive about

finding out what's wrong, especially when the patient himself starts feeling

great again and walks away from getting any more tests done!

So I will add that to my list of things to pursue, but now that this assessment

is

finished with the Pancreatologist, I'm going to take his advice and just let

things ride, hopefully as smoothly as possible. I feel good about the whole

visit, and trust this doctor with his opinions of what's best for me. I also

feel

good about the time spent down there, and know that if there was ever any

change for the worse in my condition, that's definetely the place that I'd like

to

go. It's only a two and a half hour drive from here, so it's just as convenient

as MUSC. Unfortunately, it's not in-network with our particular insurance

plan, though, so if I ever did, it would be at some expense. I was so

impressed by the entire facility and the medical staff that I'd quickly give

them

a gold star.....it certainly wasn't your run-of-the-mill medical facility!

So now I'm back to my dental woes. I saw the dental surgeon on Thursday

and we're now waiting on approvals from my insurance company since I will

have to be admitted into the hospital for my new teeth. When I talked with the

nurse about it on the phone Friday she said that I would be admitted, and

then I said, " yeah, but I'll be leaving right afterward, right? " , and she said,

" well, we don't know that for sure " .....and scared the whits out of me! Since

I've elected to do this in lieu of excessively more expensive periodental

reconstruction, I personally don't see why the insurance company should balk

at this procedure. I've notified my case manager and she's trying to expedite

everything so we can schedule this and have it not interfere with the

upcoming holidays. Give me some time to adjust to those new teeth! Since I

know I'm going to be spending a couple days preparing all our marvelous

Thanksgiving feast with all the trimmings, and then the same at Christmas, it

would be nice if I could get this business out of the way so that I could

actually

eat and enjoy some of the concoctions that I'll be making! Otherwise, it's

going to be mashed potatoes and turkey mush for me...lol!

That's my update, and as usual, I was long winded, and thank any of you who

stayed aboard to read it all. In our county the kids are doing Halloween

tonight, so I'm off to the store to load up on some treats. We rarely get too

many where we live, but there will always be a few and I hate to be empty

handed.

Hope everyone is having a good weekend and better days ahead for each

and every one of you who suffer.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

SE Regional Rep., PAI

Note: All comments or advice are based on personal experience or opinion

only, and should never be substituted for consultation with a medical

professional.