Re: Long:

[Guest guest]

Hi ,

First of all, thank you for the kind words.....I am not the best when

it comes to offering emotional support but I hope that I can help

other people understand things from a more " clinical " view.

Doesn't mean that I am right or even helpful, but I try to offer

insights of the kind that I look for. I just remember when I first

learned that I had this type of problem and was starting to look

for the cold hard facts......they were very hard to come by. I figure

that combining practical experience with so-called known

medical facts maybe we can make sense out of what we are

being told by our doctors.

I also want to respond to your experience with this latest doctor.

But to preface what I say by stating that I do not support or

excuse what he said or how he treated you as a human being. I

just want ot offer insight into some of the " facts " that he related to

you so that maybe you can sift out the good stuff from the bad.

Concerning the gastric emptying test....from what I have read,

this disorder goes hand-in-hand with pancreas problems.

Something to do with the nerves and the interaction of pancreatic

enzymes and gastric hormonal signals. In addition, any

medication that you are taking (like the pain meds) will slow

down the whole GI system so that food does not empty from the

stomach in the usual time frame. So mentioning this, is most

likely prudent. What it means in practice? Probably only gives

support for offering medication that can speed up the

constractions I think. Other people that have been tested for this

and are being treated can probably enlighten you more about

this. Basically, he was not blowing you off, I think, when he

mentioned this.

Now about the touchy subject of small duct disease......From

what I have read, and my interpretation of it, is that there is

absolutely no test for small duct disease. The small ducts, are

so small (think capillaries in our blood system) that in a normal

pancreas they are never, ever visualized. MRCPs, ERCPs and

EUSs only visualize the two large ducts and then a few

secondary branches. In people who have large duct disease, it

is these ducts and branches that are seen to have defects....the

dilations, strictures, obstructions, calcification, etc. The

treatment for that is stenting, sphincterotomies and surgeries as

needed. Small duct disease though, usually cannot be seen as

even dilated small ducts are still too small to detect. I think,

though, that sometimes pseudocysts can point towards small

duct disease. But for the most part, this is a catch-all phrase that

doctors use when it is apparent that there is something wrong

but nothing obvious is showing up on any imaging tests. For the

most part, I think, surgery is an option.....again, with the idea that

if the pain goes away, then the diagnosis was right. Kinda crude

but it illustrates where we are at in understanding pancreas

problems. The only thing is, if the pain doesn't go away, it

doesn't rule out small duct disease as the whole pain process in

CP is poorly understood. It is not uncommon for people who

have had a complete pancreatectomy to still have pain..the

whole phantom limb pain scenario. It is thought because the

pain has become " imprinted " into the spinal column / brain nerve

tract, among other hypotheses. So again, he was not

necessarily grasping again. But he does seem to be

contradicting himself.......However, he may have just been trying

to give you a best case / worst case scenario too. The idea that

the best case (in his mind) would be that this is a functional

disorder like gastroparesis or IBS (and I shudder to even write

IBS as I have issues with that diagnosis) which, again, in his

mind, isn't " fatal " , versus a more serious but just as elusive

diagnosis as small duct disease.....which has a much more

invasive " cure " (if the patient decides to go through surgery). I

am thinking that you may want to consider getting a surgeon's

opinion. Surgeons have different approaches and philosophies

then medical doctors....you have to keep in mind that the

" medicine " approach (which roughly means those doctors that

are trained to diagnose and treat patients through medication or

non-invasive procedures) versus a surgeon's (which are those

doctors that are trained to diagnose and treat patients with

invasive interventions) can be completely different. This may be

one way to get a fresh viewpoint. And surgeons may be more

willing to aggressively test before committing themselves to

operation. The best surgeons fear operating on someone who

doesn't need it. So they usually have to convince themselves that

it is really the right thing to do before they will recommend it.

And ambivalence that you are hearing from this doctor may be

that whole attitude of it ain't CP until the imaging studies say it is

CP.......which basically means that he could be relying on a

diagnosis by actually seeing obvious changes in the pancreas

seen by CT, MRCP, ERCP or EUS. And as we all know, it can

take years for changes that are going on in a cellular level

become large enough to be seen by our technology. If he is a

" purist " then this would explain why he is reluctant to committ

himself to a diagnosis of CP. However, that does not excuse his

dismissal of SOD......even though this is controversial, he has

the opinion of one of the nation's authorities on this disorder, so

he should, at least, acknowledge the existence of this and the

possibility that it is influencing your health.

Unfortunately, when it comes to diagnosing and treating

non-malignant pancreas disease, there are no cut and dried,

authoritative answers, especially when a person could be in the

very early stages of CP. It is kinda like the whole mixed

connective tissue disease entities.........in the early stages, you

are not sure what will eventually come to light: lupus,

scleroderma, sjogren's etc......so you just use a very generic

diagnosis of Raynaud's or positive ANA. etc. Then as you follow

the patient through the next couple of years (sometimes even a

decade or more) the disease may progress so that the signs

point to lupus, etc and then after a long time, you may finally have

that definite diagnosis. But until all the signs and symptoms

converge, a good rheumatologist will offer treatment for the

symptoms, periodic evaluation by lab or imaging, and follow-up

examinations to look for changes in presentation. However, the

art and science of rheumatology, as a specialty treating chronic

diseases, is light years away from the specialty of treating

non-malignant pancreatitis. By that I mean. GI docs have no

experienc or inclination to offer a tentative but broad diagnosis of

" symptomatic " CP (which is something I made up to designate

early stage CP with no overt signs noted). If they would, I can

imagine a protocol that would be similar to the rheumatologists:

that is, periodic examintion, imaging studies and clinical

evaluation; and aggressive treatment of symptoms while the

paitent and the clinician are doing the " watchful waiting " dance.

While frustrating, this is a reasonable approach to certain

chronic diseases that have no known " cure " . Although blunt and

cold, his comment of " just having to live with it " has a kernal of

truth. By that I mean, in chronic diseases in which the body is

destroying itself on a cellular level, there may be no way to

correct that damage or to stop it from occuring. So the best we

can do is to manage the symptoms. Going home to learn to live

with it should mean that he, as a doctor, will do whatever he can

to help you have a good quality of life....to live the best you can

with all the approaches that modern medicine has to offer you.

While acknowledging that he has no magic bullet or answer for

you, he should offer you his expertise and ongoing monitoring of

your disease. If he was the type of doctor that is willing to treat

patients with a confusing chronic disease. But if he is using that

phrase of learning to live with as a way to dismiss his patients

then it is very unprofessional. No doubt, we all have to live with it,

just as the asthmatic learns to live with his breating / allergy

problems. But he doesn't go it alone. In the same manner, so

should " symptomatic CP " patients.

As far as your pain clinic noting that keeping appointments may

determine availability of prescriptions....again that is not

unreasonable as a general policy. They have to document that

they see the patients every so often or else they will be

sanctioned by the DEA. In addition, it is just good medicine to

have a face to face examination of a patient for any

prescription...whether it is narcotics or not. The doctor has to be

sure that the prescription is being used correctly or that there are

not knew symptoms or signs that warrant a change. That being

said, I would think that a pain clinic could make exceptions for

patients that may periodically re-schedule an appointment. My

pain clinic is very, very adamant that no prescriptions will be

written without an appointment with the pain doctor. Once there,

it is up to me and my doctor to determine when I will need to be

seen again for " refills " on my scripts. For the last year and a half,

I go every three months. Hopefully as things get more

manageable, I can stretch out the 'scripts to only needing an

appointment every six months or so. But from a clinicians point

of view, that general policy of scripts is reasonable and

understandable.

Hope this long response to your long post helps you a little. I

am not condoning your doctor nor trying to excuse his behaviour.

You know how much I resent arrogant doctors....but I think that

some of the information that he gave you may have some useful

tidbits. Think about the surgeon and about Mayo.........Like you

said, fighting until you get the answers will probably get you on

the right track. It is just tragic that the fight has to become an all

out war.

Laurie

Didn't have a chance to proof read this, so let me know if there

are drastic confusion in my words!!! LOL