To Zoie: Re:

[Guest guest]

Hi Zoie: Thanks for writing back to me. Yes, it's awfully strange

that the people that get the GB surgery done the old fashioned way

don't seem to run into the problems some of us get, namely, Post

Cholecystectomy Syndrome. I DOES exist but it's still quite

controversial to some of the docs even some of the

supposedly " better " GIs. Believe me (and I'm not done looking yet)

I've seen some real doozies in the past yr since all of this started

and some of them have been very prominent and well respected in

their field yet they insisted that my problem " probably " was NOT cp

but then couldn't offer up any reason for why I'm in daily pain with

the accompanying nausea of varying intensity.

I'm thinking in particular of the last one that I saw in Boston, MA..

(I live in RI) supposedly very well respected in the field even

knows the " pancreas God " Dr. Lehman out in Indianapolis, Inidiana

personally as well as professionally and when I interjected what the

reason could possibly be as to why Dr. Lehman would have had to feel

a sphincterotomy was necessary he just mumbled " I don't know " under

his breath.

Just for background for you I went out to see Dr. Lehman for a

consult and then subsequent ERCP w/manometry which found high

pressure in both my pancreatic duct and common bile duct. Dr.

Lehman did a dual sphincterotomy on me as a result and put SOD down

as his dx for a cause. This was August of 2004. Unfortunately that

procedure didn't help me in the slightest - so I guess I'm in that

probably low percentile of people that don't get pain relief after

the procedure. Don't know what the numbers are but I suspect that a

good number of people DO get relief or the docs wouldn't still be

doing it. But it just boggles my mind how doctors that are

supposedly so prominent in the field of gastroenterology and still

don't seem to know much when it comes to the pancreas. Either that

or they are just loathe to dx pancreatic disease because there

hasn't been enough damage done to the pancreas for them to make a

definitive dx so they just list it as abdominal pain of unknown

etiliogy. So, as I said I'm still looking for a good doctor and

it's now been over a yr.

As to the disability, I am/was a Federal Government employee working

as a financial analyst at a Navy lab and I've been there for 17.5

yrs!! So, while I'm filing concurrently for the regular Social

Security disability - I'm also going the route available to federal

government employees which is Disability Retirement whereby you sort

of retire early but since you're not of real retirement age you have

to have a medical problem which prevents you from doing your job.

It's been hard financially, etc, but it's also hard not going into

work anymore even though I didn't like my job much anyway...not too

much of a rewarding job being a Federal Gov't " bean counter " (LOL!)

basically but I've worked since I was about 21 yrs old (I'm now 47)

so just not having a job is a huge adjustment for me. But, as

someone else said to me (from this group actually!) " I am more of a

liability for my department than an asset which also is unfair to

the employer it was better that I just go out on a disability

retirement. " That is exactly how I feel and since I've been doing

that job for so long I can't imagine trying to start out all over

again at something else. I couldn't do that even if I wanted to

because I'm basically sicker more days than I'm well at this point

and since there is no rhyme or reason as to when the really nasty

pain/attacks will occur I can't plan anything in my life right now

and everything has to sort of be planned " around " my illness.

That's been another hard one to swallow as it were..I'm (well used

to be) a pretty spontaneous sort of person, and don't get me wrong I

was also a " planner " (probably to a fault, LOL!) but neither can be

done now.

Anyway, I probably should have sent you this lengthy email

personally with respect to bandwidth, don't really know (!!) but an

apology is in order I think to those who have already heard

my " story " and my whining and sometimes outright pity parties for

the past year.

You've found yourself an excellent source of information and

knowledge here though Zoie and beyond that this is a wonderful group

of people as well so I'm glad you've found this list. It sure helps

to talk to others that have gone thru what this illness brings

because it's just not something easily explainable to friends, co-

workers, and even family sometimes....anyway welcome and thanks for

writing. Please feel free to email me anytime...we could perhaps

compare notes or something.

thanks again