Re: Nere, here - not sure what I have....any ideas?

[Guest guest]

Hi!

After reading your post I can say, based on my own experiences,

that your situation is consistent with SOD. Doesn't mean, of

course, that is what it is....only that is is a logical thing for you and

your doctors to pursue.

There is a very good article that you can get online which is

written by two experts on SOD, biliary and pancreas problems.

The link is:

http://www.joplink.net - Vol.2, No 6 - November 2001. Title:

Sphincter of Oddi Dysfunction: Diagnosis and Treatment by

Stuart Sherman and Glen A Lehman. Published in the Journal of

the Pancreas (online). Another good website to get information

is the emedicine " post-cholecystectomy syndrome " .

As far as your symptoms: in my experience that is pretty much

what I feel when I have an attack of biliary colic. It comes on

suddenly, increases in intensity over an hour or so, leaves me

feeling achy, sore, nauseated and generally like I was run over

and dragged by a semi truck for a couple of hundred miles. I

also refer to it as a " heart attack " of the abdomen. I also get

elevated liver enzymes within the first 24 hours after an attack,

however if you test later than that, they usually go back to normal.

That is pretty diagnostic of SOD: quick elevations with quick

returns to normal of either liver enzymes or pancreas enzymes

(although there are people who don't have any changes at all -

these patients are harder to diagnose). When / if you read the

papers mentioned above, you will learn that there are three

subtypes of SOD. And that it is easier to diagnose depending on

the type and that there are more or less treatment options

depending on the type. The easiest to diagnose and the more

successful treatment is the type that has obvious dilation of the

common bile duct, elevations of liver or pancreas enzymes as

well as the biliary colic pain. The hardest to diagnose and less

successful treatment is the patient who has pain only. In your

case, if the surgeon found a dilated common bile duct on US or

MRCP then he will most likely go straight to treatment. However,

if the US or MRCP didn't show a problem then he will most likely

recommend that you have ERC(P) with manometry....this is the

only way to diagnose high pressures in the sphincter of Oddi that

may be causing your colic. However, this is not a test that is

routinely done and there is a lot of controversy surrounding its

use and the interpreation of the pressures recorded. SOD is

thought to be either a functional disorder (nerve damage for

instance) or a physical obstruction (from scarring due to either

the gallbladder surgery itself, from inflammation of the diseased

gallbladder or from irritation caused by a stone in the common

bile duct). If a cause if found, the doc will most likely cut the

sphincter to enlarge the opening, remove the stone if there is

one then stent the duct until you heal from the cut. Once this is

healed, you should experience good relief - oftentimes

permanently, sometimes not (in my case, it lasted a little over a

year). If relief isn't obtained, then they may go back in and look at

your pancreas.....some docs will not do both at the same time,

instead opting for the least risky but most likely problem first (the

common bile duct) then turning to the more risky, more unlikely

culprit second (the pancreas). In your case, having the liver

enzymes elevate (especially if your pancreas enzymes remain

normal) then it may be that you can be " cured " by the bile duct

cut. However, you have to keep in mind that your pancreas may

be involved too, even though your pancreas enzymes haven't

elevated. Which means that you have to stick with it......it may

take months of diagnosing and treating this.

Basically, it is a diagnosis and treatment that takes a lot of time,

trouble, exasperation, tears and patience. Most doctors do not

" believe " in SOD or if they do, have very little experience

diagnosing and treating it. Your best bet is to find a doctor that is

known for treating pancreas and SOD problems.....not all GIs do

this and not all pancreas specialist do either. In my case, I

resort to medicines to treat the symptoms that I have incurred as

a result of untreated SOD combined with a birth defect in my

pancreas. Do not be afraid to ask for meds to help you through

the diagnosis and treatment process (anti-nausea and pain

meds as needed) and look to diet and lifestyle changes to help

reduce the severity level and occurence rate. The most

important thing that I can suggest is that you pursue the

diagnosis, learn what you can about your treatment options then

proceed cautiously wth not too great expectations about a

complete " cure " . If it is SOD, you are unlikely to cure it....but it can

be managed enough to live a fairly normal (but changed) life.

Feel free to ask me more questions or email me for more

information. I think you are doing the right thing by seeking more

information from people who have gone through the process that

you may be entering. Learning from both the medical

practitioner's as well as from the patient's points of view is to get

the best from both worlds I think.

Laurie

[Guest guest]

Freebird,

Your description of your attacks, their location, intensity and duration sounds

to me just like what all my friends in the group who have SOD, (Sphincter of

Oddi Dysfunction), say their attacks are like. One friend, Kaye, even has an

ear ache right beforehand, which seems quite similar to your feeling that pain

and pressure in your carteroid arteries in your neck.

Although I don't have SOD, just CP and a host of other nasty things, that's

what my gut reaction is to your description. I'm sure you'll hear from many of

our members about what you're describing. I guess what I need to explain is

that these people who have SOD have chronic pancreatitis as a result of it.

If that's the case, then you're surely at the right place, and we're glad

you're

here. Not glad about your pending diagnosis, but glad to know that you've

found a group that can befriend you and support you with any of the

problems you'll encounter in the future.

Keep reading and listening, and you're bound to hear something that

supports your speculations. If there's anything we can do, all you have to do

is ask. We'll all be curious to see what the surgeon says when you meet with

him Thursday.

If it is confirmed, I would advise you to get a gastroenterologist at your first

opportunity. There's a lot to learn and treatment by a specialist will make

everything much easier for you.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

South Eastern Regional Rep., PAI

http://www.pancassociation.org/anthology#Heidi.html

Note: All comments or advice are from personal experiences or opinion only,

and should not be a substitute for consultation with your medical professional.

[Guest guest]

I just want to let you know that you are not alone in this! I have

had Sphincter of Oddi dysfunction now for 6 years since my

gallbladder surgery in 1998. I also have chronic pancreatitis.

The SOD attacks are daily for me still; sometimes more than once a

day. Since my visit to the Mayo Clinic back in September and I

started on medication, the pain is not as bad as it was before. My

attacks usually occur in the early morning hours and most of the

time on an empty stomach. I am not exactly a textbook case. I know

when an attack is coming usually a couple of minutes before

it " hits " me hard. I get a wave of nausea and I break out in a

sweat. This is followed by a " gnawing " pain just under the sternum

(chest bone). Then all heck breaks loose and the pain intensifies

and radiates to the back. This lasts anywhere from 10 minutes to 2

hours; never letting up! It takes my breath away sometimes. I am

usually sore afterwards and absolutely drained of any energy I may

have had. If the pain and nausea gets really bad during the attack

then vomiting....and more vomiting.

I had a Hida scan done after my gallbladder was removed because my

gastro doc also suspected SOD but it came back normal as well as all

of my bloodwork. He gave up on the idea that it was the sphincter.

It took me 6 years and several doctors to finally get the diagnosis

and to also learn that my pancreas had been damaged in the process.

I hate to hear that you may have this problem. I hope you find the

answers you need but if you don't, please don't give up. Let us

know what you find out about your tests.

Zoie

[Guest guest]

It does sound like you might have sphincter of oddi dysfuntion. However,

Please, please, report your chest pain to the doctor. I had a heart

attack and single bypass surgery when I was 29. Turned out I had a

genetic blood clotting disorder that caused a huge blood clot in my

heart. I would have died if I hadn't gone to the ER when I had problems

breathing and then had fiery pains radiate down both my arms. Even

though it is unlikely that you are having a heart attack, Always, Always

report chest pains, just in case.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Freebird,

Hi, I too have SOD with CP and celiac disease. Please, I want to

stress that it is VERY important that you seek a TOP SPECIALIST if

you are going to need to have an ERCP in the future. I had gone to

2 " GI specialists " , both at University hospitals in 2 different

states. Neither of them could help diagnose me completely. I

finally took the advise that I had received from this group and

contacted DR. Lehman. There are a few other TOP specialists in the

US too, and I'm sure many people on this board will let you know

their names and contact info too. I wish you the best of luck in

getting a proper diagnoses.

Take care

Kris in TN