What are they doing? Please help

[Guest guest]

Hi all. Okay I have a couple of questions. For those who know,

I've been having pancreatic attacks and they diagnosed my pancreas

divisum. I've had an MRCP done in Dec and they've attempted twice

by ERCP to cut the duct and place stents. Both times they failed

cause they couldn't access the duct.

Now they are suggesting either an MRCP or ERCP with secretin

stimulation. Why didn't they do this already? It took me 3 months

to get in for my first MRCP. And why didn't they do this on the

other 2 ERCPs.

I'm just so frustrated and ready to give up going to docs all

together. They never give me straight answers and seem to take

there time with doing anything. I've been sick for a year and I

just want to stop fighting the medical system to get healthy. I

have pain daily and last check my amalaze (sp?) was 150 and lipase

2220. Why doesn't anyone want to help me get better? Jen

[Guest guest]

Hi Jen,

Boy, I am so sorry that they haven't been able to get access to

your dorsal duct. Have they told you why? Usually if the minor

papilla is really small they can cut it then get the instrument in to

inject the dye. In my case, the doc said it was one of the smallest

that he had seen in years but he was able to cut the papilla and

insert the endoscope using a dilating probe - kinda like a

corkscrew. Then he put in a stent. Maybe your duct is very

twisted or crooked?

I am unsure what they hope to accomplish with another MRCP

other than to see if they did any damage from your previous

attempts at stenting (pseucdocyst formation or scarring of the

duct?). The secretin stimulation is to dilate the pancreas duct.

Maybe they are hoping that this will illuminate why and where you

are obstructed (from a stone or stricture or something).

Here is some quotes from an article that discusses using the

secretin test with endoscopic ultrasound (taken from " Dynamic

imaging of the pancreas using real time endoscopic

ultrasonography with secretin stimulation " Gastrointestinal

Endoscopy; Dec 1998: Catalano et al.)

" Secretin-stimulated endoscopic ultrasound (SSEUS), 1IU / kg

secretin) was performed in 20 control subjects (no pancreatic or

biliary disease), 40 patients with symptomatic chronic

pancreatitis, 40 patients with symptomatic pancreas divisum, 20

patients with suspected SOD and 20 patients with suspected

occlusion of pancreatic duct stents. Ductal diameter was

measured by endoscopic ultrasonography at baseline and at 1

minute intervals, after administration of secretn, for 15 minutes.

A result was determined to be abnormal when a 1mm or greater

dilation of the pancreatic duct was observed from baseline after

secretin administration. "

The authors conclude:

" Of the 40 patients with symptomatic CP, SSEU correctly

predicted obstructive pathology (stones, strictures) in 12 of 13

patients (92%). Of the 40 patients with symptomatic PD, 22

underwent stent therapy (16 of 22 with resolution of symptoms).

SSEUS accurately predicted response to stent therapy in 13

patients (81%). Seven of twenty patients with suspected SOD

had abnormal sphincter manometry. SSEUS accurately

predicted sphincter dysfunction in only 4 of 7 patients (57%).

Finally, 20 patients with suspected occlusion of pancreatic duct

stents were studied. Of the 14 stent occlusions confirmed at

ERCP, SSEUS correctly predicted premature occlusion in 12

patients (86%).

SSEUS appears to be a useful diagnostic modality in the

evaluation of patients with suspected obstructive disorders of the

pancreas and it can predict which patients may respond to

endoscopic therapy. "

Because the secretin test is again CONTROVERSIAL that may

be why they didn't do this to begin with. Interpretation of the

results as well as the actual theory behind the action of secretin

may be why this isn't one of the first line diagnostic methods.

But seeing that you have run into difficulties with the endoscopy,

they may feel that it is time to be more aggressive and open

about trying riskier and more expensive procedures. Depending

on how confident you feel with these doctors it may be worth

giving this a try. It seems that they know in a general sense what

the problem is (your PD) but that specifically they do not know

what in the pancreas is causing the difficulties in accessing your

dorsal duct. In most cases of PD, the dorsal duct can be

accessed even though it can be difficult. So there may be

something else going on that is related to the PD but separate

from it that they think is worth looking for. They may even be

thinking of evaluating you for possible surgery, depending on the

condition of your dorsal duct. These are things that you need to

ask them : why are you doing this (what are you looking for) and

what will you do with the information that you get? If you see an

anomaly or pathology what is the next step? Can we try stenting

again? are you thinking surgery? if you do not see an anomaly

or pathology, what do we do to treat the pain? I really think that

you are going to want to get to the bottom of why they cannot

access your duct - for mental and physical comfort.

I know that you are reluctant to go to Indy, for example, for

another opinion, but I am wondering how financially feasible it is

for your docs to send the tapes of your ERCPs to Dr Lehman or

Sherman to do a chart review? They may be able to determine

by actually seeing your procedure, why the duct is not accessible

and have recommendations for your doctors to try or may even

suggest that you schedule a visit with them. It never hurts to get

an opinion from an endoscopist that has " seen it all " and if they

are willing to do a chart review / consultation this may be a really

good compromise for you! This is what I am hoping to do for

myself as soon as I talk my surgeon into being the referring MD.

(or any other good endoscopist for that matter - I just pulled the

Lehman / Sherman team out as an example - not to just endorse

them.)

Oh well, just my thoughts. They may not be helpful but at least

gives you something to think about......

Laurie

[Guest guest]

Jen: I totally share your frustration especially the " timeliness "

of it all. I don't know why they can't just run all the tests they

need to run and be done with it......it IS totally frustrating. I

mean, obviously there are other patients that have appts and have

probably been waiting the same amount of time to get in but it does

seem a bit ridiculous. And all the more so, when you have daily

pain. What really gets me is that they are somewhat leery of

prescribing narcotics to control the pain which they sometimes

begrudgingly end up doing, however, it just seems like a double

edged sword. I just wish I could say " If you're so leery of

prescribing the pain meds, then why don't we get to the source of my

problem and I wouldn't NEED to ask you for pain meds. "

best wishes and please let us know what they decide to do ok?

> Hi all. Okay I have a couple of questions. For those who know,

> I've been having pancreatic attacks and they diagnosed my pancreas

> divisum. I've had an MRCP done in Dec and they've attempted twice

> by ERCP to cut the duct and place stents. Both times they failed

> cause they couldn't access the duct.

>

> Now they are suggesting either an MRCP or ERCP with secretin

> stimulation. Why didn't they do this already? It took me 3

months

> to get in for my first MRCP. And why didn't they do this on the

> other 2 ERCPs.

>

> I'm just so frustrated and ready to give up going to docs all

> together. They never give me straight answers and seem to take

> there time with doing anything. I've been sick for a year and I

> just want to stop fighting the medical system to get healthy. I

> have pain daily and last check my amalaze (sp?) was 150 and lipase

> 2220. Why doesn't anyone want to help me get better? Jen