Re: To E

[Guest guest]

Lily:

The blood was drawn at CC and sent to a lab in Utah.

Results took about two weeks, if I remember correctly.

I had posted the name of the lab on this site a while ago.

Would you like to do so again?

Although, I would hope that there are other labs around the country that do

it, as well.

-E

[Guest guest]

Lily:

The differing opinions of physicians never cease to amaze me.

I've never heard of that test as being experimental.

I did have it followed up by the EUS biopsy with fine needle aspirations.

That was conclusive. The head of my pancreas was, I quote, gnarly. The

tissue samples were conclusive.

The aspirations did, in deed, cause an attack, as I had been forewarned. But

I finally had a diagnosis after trekking to various hospitals for three years.

Thankfully, I've done very well with Viokase and daily Ultram.

The EUS nerve blocks have been very effective this far, but never a sure

thing.

-E

[Guest guest]

I do not know what the test cost because it was paid for by my HMO.

Besides, that was in 1996.

-E

[Guest guest]

Lily:

Dr. Conwell at CC had my blood sent to:

Associated Regional University Pathology

500 Chipeta Way

Salt Lake City, UT 84108

800 242-2787

The report listed the following:

Trypsinogen expected values:

CHRONIC PANCREATITIS....less than 13.0ng/mL

ACUTE PANCREATITIS.....greater than 45.0 ng/mL

Mine measured 10.2

Hope this helps.

-E

[Guest guest]

Lily and all:

What really irks me is that the GI doctor that I was seeing in '95 and '96

told me not to go to CC because " they're only good for esophageal problems. "

And the pancreas specialist to whom he did refer me,

Banks, at Brigham actually refused to see me.

He's the moron who told me that I was " a case where medical science had

failed the patient. "

It's his pancreas textbook that has been used worldwide.

The NY doctor, an old med school buddy of his admitted that

Dr. Banks probably didn't want me to screw up his study.

It's a sin to think of all of the crap that we have been through in our

attempts to get properly diagnosed.

-E

[Guest guest]

Lily:

There's an old joke about a Jewish funeral during which a very old lady keeps

on interrupting the eulogy with her cries of

" Give him some chicken soup! "

Eventually the rabbi says, " But lady, he's dead " to which she replies,

" Couldn't hurt! "

That's what I think you should say about the blood test.

-E

[Guest guest]

Lily:

Why stay with a such a doctor?

-E

[Guest guest]

Lily:

My road has taken over eight years to reach where I am at this moment.

Those eight years included over fifty tests and procedures, four dozen GI

specialists and thirteen hospitals.

-E

[Guest guest]

Lily:

Although neither a physician or nurse, I am well educated and informed.

You know all too well that too many doctors simply don't respect their female

patients.

Why put up with it?

-E

[Guest guest]

Lily:

I'm shocked and appalled that requesting a blood test is a " battle. "

-E

[Guest guest]

Lily:

Living where I do, Long Island, New York, the choices of physicians,

hospitals and other medical services are so

vast that we sort of take them for granted.

-E

[Guest guest]

In a message dated 1/1/2002 1:41:28 PM Eastern Standard Time,

llakovo@... writes:

<< And thank GOD that you are the type of person that you are or you would of

been dead by now >>

Sad, but true.

My uterus would have killed me decades ago if I had not pushed and pushed for

answers and an eventual hysterectomy.

And to have to fight again for help with my GI problems was almost too much

to handle.

-E

[Guest guest]

Nothing, actually I refer alot of my RSD patients to the Clevelenad Clinic

for treatment of their pain per my job. But I like to at least offer people

other choices like those of Dr. Lehman since he and Dr. Cotton in South

Carolina are well known in the country. I have a friend who is a doc in

Columbus and he refers alot of his folks to the CC. I personally like to

know what doc will be seeing me and then I check the medical board web page

to make sure they have had no formal action against them. When I called the

CC one day this summer to see who the GI docs were, I did not get a

customer friendly person on the phone. So then I pursued Indy. But you are

right ,CC is a good facility. It is just one of personal choice. I have

often tossed around the idea of getting yet another opinion and the CC is

still one that I am considering once I get serious about going. ONLY because

I am now able to work part time and my local GI doc has been letting me try

different meds, have I not pursued it. But if I plateau or feel worse, I am

considering another opinion. I tihk everyone has to see what works best for

them. Plus I tihk the CC is one of the only places that offers the specific

pancreatic blood tests that are not done everywhere.

Where did you get your blood trpsinogen level done ?

Lily

Re: Head of Pancreas Separated from Body

> Lily:

>

> What makes you question a trip to The Cleveland Clinic?

> That's where I finally got my CP diagnosis.

>

> Dr. Conwell is known for his pancreas work.

>

> -E

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

Ditto. An EUS can accomplish different things as well as visualization and a

needle biopsy. Along with the blocks. We have very few docs in this area

that does it, maybe one within a 50 mile range. My doc told me just this

Friday that the EUIS part of the ultrasound was good to look at tissue cells

vs ductal structures. Where are the ERCP was much better at the ductal

structures.

Well you answered my question that I just sent on a previous e mail. The

blood trypsinogen level that you had done, was it sent out to another lab

and do you rememebr how much it costs ? My doc said it was not conclusive

but more expieremental and not beneficial. ( Please don't get me started on

that , my poor husband hadto listen to me all the way home !!!).

What is your opinion of the blood trypsinogen test ?

Lily

Re: Head of Pancreas Separated from Body

> I have another question:

>

> When you refer to " EUS, " which procedure do you mean?

> I ask because EUS simply means endoscopic ultrasound, the method by which

a

> test or procedure is accomplished.

>

> I've had an EUS assisted pancreatic biopsy, as well as a series EUS

assisted

> celiac nerve blocks. All were done at Winthrop

> University Hospital in Mineola, NY.

>

> The former confirmed the diagnosis that Dr. Conwell had found via blood

> trypsinogen.

>

> -E

>

>

>

> -E

>

>

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

Please. I will print it off this time and keep it is my special file.

Thanks,

Lily

Re: To E

> Lily:

>

> The blood was drawn at CC and sent to a lab in Utah.

> Results took about two weeks, if I remember correctly.

>

> I had posted the name of the lab on this site a while ago.

> Would you like to do so again?

>

> Although, I would hope that there are other labs around the country that

do

> it, as well.

>

> -E

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

Well, at least you are on the right road and know what works for you. And

yes, the difference between physicians opinions are down right scary. I

thought I had seen it all after being a RN for 26 years but as a patient,

not a nurse, I have learned alot at this point abput physicians. The shoe

always fits differently when you have to wear it yourself. Ya know what I

mean ? !!

Lily

Re: To E

> Lily:

>

> The differing opinions of physicians never cease to amaze me.

>

> I've never heard of that test as being experimental.

>

> I did have it followed up by the EUS biopsy with fine needle aspirations.

> That was conclusive. The head of my pancreas was, I quote, gnarly. The

> tissue samples were conclusive.

>

> The aspirations did, in deed, cause an attack, as I had been forewarned.

But

> I finally had a diagnosis after trekking to various hospitals for three

years.

>

> Thankfully, I've done very well with Viokase and daily Ultram.

>

> The EUS nerve blocks have been very effective this far, but never a sure

> thing.

>

> -E

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

Idid, till I was blue in the face. My GI doc hates being challenged and he

certianly does not like a well informed patient. I think that we are usually

into our conversation about half way before he remembers that I am a nurse.

Flexible he is not. But I have a work around solution,,, you know us brassy

resourceful gals,,, where there is a will there is a way. Sometimes you have

to pick your battles and that one with him was going no where. I can still

get my goal accomplished without him, I just wanted to be a good patient and

discuss with him first. So much for being a good guy so to speak !

Lily

Re: To E

> Lily:

>

> There's an old joke about a Jewish funeral during which a very old lady

keeps

> on interrupting the eulogy with her cries of

> " Give him some chicken soup! "

>

> Eventually the rabbi says, " But lady, he's dead " to which she replies,

> " Couldn't hurt! "

>

> That's what I think you should say about the blood test.

>

>

> -E

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

I have been looking for an alternative, and I want to find a good one for

sure. My options are limited locally and I have some leads in another larger

city.This one I can work around sometimes. I hate having to work at the

relationship with him but aside from a few conflicts, I have been able to

make some ground. Believe me, when I find the right one I will make my move.

It is just hard to work partime and still check out all leads. He has his

days like most of us do. He has made some efforts on his part but warm and

fuzzy he is not.

Lily

Re: To E

> Lily:

>

> Why stay with a such a doctor?

>

> -E

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

And thank GOD that you are the type of person that you are or you would of

been dead by now. I wish I had 4 dozen GI docs to chosse from around here !

But you live in the great state of New York which is a big help. I know that

you went to the CC and you have been thru alot. I'll find the right match

for me, it just takes time.

Lily

Re: To E

> Lily:

>

> My road has taken over eight years to reach where I am at this moment.

>

> Those eight years included over fifty tests and procedures, four dozen GI

> specialists and thirteen hospitals.

>

> -E

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

:

As we all know too well, there are loads of doctors, some in the GI field who

also know nothing about CP.

Frightening!!

And, if they're not young, they're often lacking current knowledge.

At almost 51, I'm older than all of my doctors and that's working out just

fine.

I'm reaping the benefits of having Dr. Gress here in NY as he studied with

Lehman and Sherman.

And he's one of the five in the country to perform those EUS celiac blocks.

After traveling to other states, I'm so happy to have be able to stay close

to home.

-E

-E

[Guest guest]

Hi,

I'm from the same place as Lily, and I can vouch for the fact that we

are very, very limited on our choices of specialist here in

Springfield. I've been battling this for 9 long years, and if I

hadn't been sent to Dr. Lehman by a very smart, young new doctor that

was here, I honestly don't know where I would be right now. I

remember the very last time I was admitted to Ohio State, (I spend

some of every month from Feb. 93 - Oct. 95 as an inpatient there)

the " great " GI doc told me, " Now, I want you to stay gone for at

least a year " . I don't know if I took the statement wrong, or what,

but I never went back after that. And then I was having some nerve

blocks done by this pain specialist here in Spfld, who came from IU

and knew of Dr. Lehman personally, because he did some of

his " schooling " under him. He called Dr. Lehman on a Wednesday, and

I had an appt. that same week, on Friday. I'm very serious when I

say if it weren't for that wonderful young doc who cared, I don't

think I'd be sitting here right now. I'm afraid to think what might

have happened if I had stuck with those guys at Ohio State. So, to

sum up my rattling on here, there are very, very few docs here that

knows much of ANYTHING! My own primary doc has told me more than

once that she knows NOTHING about chronic pancreatitis. Scary, but

its the best I've got for now...........Good Luck to all you looking

for some new answers this year. I hope they will be discovered.

Lots of Hugs,

P.s. The pain guy I mentioned is now in private practice. I haven't

seen him since 95, and I have made an appt. with him to see if he

will help me manage my pain better. I'm not doing so good right now,

and I think its time to bring in the expert! lol

~~~~~~~~~~~~~~~~~~~~

And thank GOD that you are the type of person that you are or you

would of been dead by now. I wish I had 4 dozen GI docs to chosse

from around here !

But you live in the great state of New York which is a big help. I

know that you went to the CC and you have been thru alot. I'll find

the right match for me, it just takes time.

Lily

[Guest guest]

You can say that again.

gail

LARRY R KOVALESKI wrote:

> Well, at least you are on the right road and know what works for you. And

> yes, the difference between physicians opinions are down right scary. I

> thought I had seen it all after being a RN for 26 years but as a patient,

> not a nurse, I have learned alot at this point abput physicians. The shoe

> always fits differently when you have to wear it yourself. Ya know what I

> mean ? !!

> Lily

>

> Re: To E

>

> > Lily:

> >

> > The differing opinions of physicians never cease to amaze me.

> >

> > I've never heard of that test as being experimental.

> >

> > I did have it followed up by the EUS biopsy with fine needle aspirations.

> > That was conclusive. The head of my pancreas was, I quote, gnarly. The

> > tissue samples were conclusive.

> >

> > The aspirations did, in deed, cause an attack, as I had been forewarned.

> But

> > I finally had a diagnosis after trekking to various hospitals for three

> years.

> >

> > Thankfully, I've done very well with Viokase and daily Ultram.

> >

> > The EUS nerve blocks have been very effective this far, but never a sure

> > thing.

> >

> > -E

> >

> >

> > PANCREATITIS Association, Intl.

> > Online e-mail group

> >

> > To reply to this message hit " reply " or send an e-mail to:

> Pancreatitis (AT) Yahoo

> >

> > To subscribe to this e-mail group, simply send an e-mail to:

> Pancreatitis-subscribe (AT) Yahoo

> >

> >

[Guest guest]

I know waht you mean, the hope is still there that it will get better or this

couldn't hurt!

gail

esquare726@... wrote:

> Lily:

>

> My road has taken over eight years to reach where I am at this moment.

>

> Those eight years included over fifty tests and procedures, four dozen GI

> specialists and thirteen hospitals.

>

> -E

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

E,

I worked with a pharmacist in the Texas hospital who had the same last

name. Pharmacist Fuchs. He was a pretty smart guy, I might add. But don't

feel bad,,, I also worked with a psychiatrist in Texas who's name was Dr.

Loon-ey ! Honest to pete ! Not to mention the plastic surgeon who is called

Dr. Butts. Docs should change their names when they go into practice ! Life

just makes us smile sometimes.

Lily

Re: Re: To Heidi

> Lily and all:

>

> If you think that Kawaleski causes problems, you will surely understand

why I

> still use my maiden name of Grove.

>

> You see, my actual full legal name is Ellen Grove, now don't laugh too

much,

> FUCHS.

>

> That's FUCHS which rhymes with pukes.

>

> Many either curse or sound like their choking in their attempts to

pronounce

> it.

>

> -E

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

> To reply to this message hit " reply " or send an e-mail to:

Pancreatitis (AT) Yahoo

>

> To subscribe to this e-mail group, simply send an e-mail to:

Pancreatitis-subscribe (AT) Yahoo

>

>

[Guest guest]

Lily:

My husband thought that I made this one up; Dr. Demento!

He's a dermatologist.

-E