Advice needed concerning Dr Lehman

[Guest guest]

I think my insurance problems have been solved...at least as far

as I can tell from my current situation. So I am thinking seriously

about making an appointment with Dr Lehman because of some

strong encouragement from a friend. But I am deeply conflicted

about this. Some of my arguments against going is that I am

tired of being treated with such disdain and hostility or just as a

bother to the doctor. And I am fairly stable with my pain and

disability...that is, I have bad weeks interrupted by occasional

good days. I have problems with food, but not as bad as last year

when my minor papilla was completely closed (I have pancreas

divisum). I am on 30mg of oxycodone a day and about 12 to

15mg zofran. I still have days when the pain is pretty unbearable

but I can get through it by doubling up on the oxycodone. My

quality of life is not that good, but then it could be lots worse too. I

do not have acute attacks requiring hospitalization, I can work

around my job....but I have no social life (soon as I get home it is

off to bed). I also have no local doctors who are willing to treat

me for this condition when I have flares that I feel are beyond my

ability to manage.

The reasons for seeing him is that he has a great reputation: I

have not heard a bad thing about him! and in fact, he seems to

do miracles. As far as personally, I currently do not have any

doctor that is managing my pancreas divisum other than my pain

doctor. I believe that it is in my best interest to have a GI guy that

is familiar with PD and my history specifically, in case I need

yearly follow-up or even urgent care in case my illness decides

to progress or for those time when I believe I cannot manage my

care by myself.

So my questions are: is there anything that he can offer me at

this time seeing that my condition is relatively stable? Will he

look at my needs and history specifically or just give me a

general prognosis that we all know applies to the uncertainties

of CP. Will he insist on taking a look himself, as in doing an

ERCP, or will he just go by my word about previous ERCPs and

surgeries. If I decline an ERCP at this time, because I feel that I

am relatively stable (other than a possible pseudocyst that was

never positively confirmed), will it be a wasted trip and wasted

time on his part? Part of me says to just ignore things, to not

play with fire at this point because each time I have someone

mess around with me, I end up worse off than I was before

hand...but then part of me says that this is way too much for me

to handle on my own...that there will come a day when I will need

the expertise of a GI guy to either re-stent me, or handle a flare or

heaven forbid, an acute attack and that is no time to be doctor

shopping. But, is this the way to go? Is he really that good? Or

will it be the standard, " there is nothing I can offer you " spiel? I

hate to drive 5 hours for a half hour visit leaving me more

confused and depressed than I was before leaving home......But

then, if he really can address my history and present condition

with any kind of special knowledge and offer advice and further

care as needed.....then that would be a welcome relief! a security

blanket, a load lifted off my shoulders! (you get the idea). Any

thoughts?

Laurie

[Guest guest]

Laurie,

Personally, I think everyone should have a Gastroenterologist on their health

team. If you were a person with a serious heart defect or heart disease, would

you go to a general practitioner or a cardiologist? You have a specialised

medical problem that needs to be under the care of a specialised physician.

That's my personal take on the whole thing.

Dr. Lehman DOES have a reputation for excellence and is nationally known

throughout his field. Having him as part of your health care team would only

be a benefit. While there may not be anything that he can do for you at the

present time, the time may come in the future that you need experienced

medical care for your chronic pancreatitis, as it is a PROGRESSIVE disease.

Although you are handling it well now and you're feeling pretty good, with

only typical flares and relatively few problems, that situation could change

overnight. I'm not saying that it's going to, but if it did, who would you go

to for

specialised advice? And as you said, during the middle of a crisis is no time

to be doctor shopping.

As far as him " taking your word " on your previous ERCP's, I don't think he

would. He would want to see the records of any previous ERCP's,

procedures or tests, I imagine. The thing to do would be for you to get your

copies of any previous surgery, radiology reports, CT-scans, etc. You should

have a copy of ALL your records, and if you don't have one, now is the time to

start collecting them. I have copies of all my records; each doctor's visit,

each

test, every CT-scan, ultrasound, radiologist's report, all hospitalizations,

etc.

from my first diagnosis of AP up until my last visit last month. No doctor

worth

his salt is going to just take a patient's word, they need to see documentation.

As far as him wanting to do another ERCP for his own analysis, if you don't

want one done, you always have the last word. It may be that at this time he

WOULD just give you the " spiel " , because at this time it may be that there isn't

anything more that he could do to alter your present state. Are you going to

see him to ask if he CAN do something more, or just to establish a patient

treatment history? If you DO want him to see if he can do more for you, well

then he probably would need to do an ERCP to find out how things look right

now. Otherwise, he'd probably just advise you to continue on as you have

been and return again if there are any new developments or any change in

your status quo.

Your comment about the pseudocyst caught my eye. If it were me, I'd want to

have that confirmed as a positive yes, there is one, or no, there isn't. If

there is

one and it's 2 cm. or less, it's no big deal and probably nothing to worry

about,

but if there is one, and it's more than that, you really do need to know about

it.

I can tell you, by experience, that larger pseudocysts can be trouble and they

do need to be monitored. You really need to have this verified, one way or

the other.

I hope this helps answer some of your concerns. Please understand that this

is just my own opinion on your situation.

With love, hope and prayers,

Heidi

Heidi H.Griffeth

South Carolina State Rep.

Southeastern Rep. , PAI

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

only, and should not be substituted for professional medical consultation.

[Guest guest]

Dear Laurie,

I so understand your reluctance at seeing another Md after your

experience with your last Pancreas Md. Remember, I also saw the same

jerks in Milwaukee. They told me I just had to learn to live with it

and there were no treatments that could help me. I gave up for over

a year after that and just lived on pain meds, liquids and tried

different pain clinic ideas to stop the pain but nothing worked for

long. I finally agreed to see Dr. Lehman. He will NEVER treat you

with disdain or hostility. He fully understands this disease and

really cares about his patients. No one can fully understand this

until you meet him. I was also very leary because of my treatment by

the Mds in Milwaukee.

But I thank God everyday that I went to Dr. Lehman. When I went

the first time, I brought no records from the Milwaukee Md. I wanted

him to base his opinion himself, not by the notes of those jerks. I

did tell him what happend in Milwaukee. But I also told him to go in

and see whats up and if he sees a problem to try and fix it. If it

means a flair to get better, then so be it. But the decision will be

yours. He will tell you what options you have and the decision will

be yours. My personal feeling is to let him do the ERCP so he can

see where you are at now. For me, the ERCP alone does not cause a

flair. I get flairs when they do something, like spicterotomies,

stenting, dialation of the ducts, etc... With my last progressive

stenting I only flaired bad with the first stent. The next 2 went

real smooth. I guess because the duct was already opened from the

first stent. But again, that decision will be yours. Can you get the

films from your last ERCP? If so, then perhaps that will be enough

for him to evaluate your case. But being that psuedocysts are a

possibility he may want some sort of test to evaluate that? I never

had psuedocysts so not sure what test they do to look at that. But

what ever you decide it will NOT be a wasted trip. He will tell you

what options you have. I am very blessed that he is part of my

medical team. As you stated, we never know what will happen in the

future and it is nice to know that I have one of the best to go to

if things turn for the worse. Having an MD who knows this disease

and believes me has sooo lifted a load off my shoulders.

I hope you call and make your appointment. You will so kick

yourself for worrying so much once you meet him. If I can answer any

other questions, please ask.

Love,

w

my questions are: is there anything that he can offer me at

> this time seeing that my condition is relatively stable? Will he

> look at my needs and history specifically or just give me a

> general prognosis that we all know applies to the uncertainties

> of CP. Will he insist on taking a look himself, as in doing an

> ERCP, or will he just go by my word about previous ERCPs and

> surgeries. If I decline an ERCP at this time, because I feel that

I

> am relatively stable (other than a possible pseudocyst that was

> never positively confirmed), will it be a wasted trip and wasted

> time on his part? Part of me says to just ignore things, to not

> play with fire at this point because each time I have someone

> mess around with me, I end up worse off than I was before

> hand...but then part of me says that this is way too much for me

> to handle on my own...that there will come a day when I will need

> the expertise of a GI guy to either re-stent me, or handle a flare

or

> heaven forbid, an acute attack and that is no time to be doctor

> shopping. But, is this the way to go? Is he really that good? Or

> will it be the standard, " there is nothing I can offer you " spiel?

I

> hate to drive 5 hours for a half hour visit leaving me more

> confused and depressed than I was before leaving home......But

> then, if he really can address my history and present condition

> with any kind of special knowledge and offer advice and further

> care as needed.....then that would be a welcome relief! a security

> blanket, a load lifted off my shoulders! (you get the idea). Any

> thoughts?

>

> Laurie