Dual problem perplexes GI docs

[Tomskie]

I've been suffering for 4 years with billiary sludge and a small hiatal hernia. I had a constantly contracted gall bladder with a large amount of billiary sludge on my echo and my gall bladder was removed 1 1/2 years ago.
My first problem is I continue to suffer from billiary colic. I have rather constant pressure in my upper abdomen and I can feel and hear the movement in this area. The condition has gradually worsened over the last year and a half. As the pain increases I find that lying down on my back helps relieve some of the pain and may gradually allow some the backup to flow out. If that fails I have found that Epsom salts and water will provide almost complete relief of pain and pressure within a half hour. Unfortunately this approach (and its laxative side effects) now has to be done every two weeks now as the pain has been worsening. My GI doc have resisted doing the billiary workup I have asked for because my liver values are always normal. They are also confused the very unusual and separate problem I have with esophageal reflux.
    During the last 4 years, I've suffered from acid/bile reflux due to a smallish hiatal hernia (I'm using PPIs), worse when I lie down. I have low/normal LES pressure and my pH monitoring/acid contact times were total 10.3 upright 7.7 supine 13.2 symptom indices 75%. While the heartburn aspect of my reflux is quite tolerable my vagus nerve reaction to the reflux in the morning is not. While I have always been prone to very rare heart dysrhythmias when I drank something very cold (cardiology workup normal), I have never had any other cardiac issues. This reflux in recent years has caused a variety of disabling symptoms including low body temperature 94.1 / 95.1 recorded at ER, low blood pressure 95/55 range (normally 125/75) recorded at ER visits, light headedness, some bradycardia, ringing in the ears. I also believe that my vagus nerve problem has contributed to my sphinter of Oddi not opening as it should, contributing to my billiary pain. The only solution to this problem I have found is to sleep with my chest at a 45 degree angle to the floor which my vagus nerve loves and my back hates, but I'm getting accustomed to it.
     When I have tried to get GI docs (I've had 3) to focus on my billiary pain they invariably attempt to combine all of these symptoms together and look for the single cause of my problem. This approach has led them to conclude that  my billiary pain is all imaginary, because my liver values have been normal and they would not explain all of my symptoms. Panic attacks are a common response and they ask about my stress level. My attempts to convince them about my happy personal life have been unsuccessful. They assure me that with normal liver values there is no need for a billiary study (MRCP/ERCP) and that there is no connection between my reflux and vagal nerve (rare dysrhythmia, low body temp, low BP ect.) After 2 years I've been unable to get ERCP or useful reflux treatment.

[Kevin Pho, MD]

Hello - thanks for asking your question.

I'll try and shed some insight into your situation.  If 3 GI doctors have examinined you, I hope that you can understand that I cannot diagnose you, considering I have neither met nor examined you.  

One consideration that you may want to suggest is Sphincter of Oddi dysfunction (SOD).  This is suspected in patients who have biliary-type pain without other apparent causes.  In this setting, SOD is most commonly recognized in patients who have undergone cholecystectomy - as you have (hence the name postcholecystectomy syndrome).  Reasons for this are not well understood, but may be related to unmasking of preexisting SOD due to removal of the gallbladder, which may have served as a reservoir to accommodate increased pressure in the biliary system occurring during sphincter spasm.

The best studied classification system for biliary SOD (known as the Milwaukee Biliary Group Classification) is based upon the number of laboratory, clinical, and radiologic features suggesting SOD in an individual patient. It recognizes three groups of patients who have biliary type pain without an identifiable cause prior to manometry:

Type I patients fulfill all of three criteria: (a) pain associated with abnormal serum aminotransferases (ALT and AST more than two times normal on at least two occasions); (b) a dilated common bile duct more than 10 mm on ultrasound or 12 mm on ERCP; and (c) delayed drainage of contrast from the common bile duct after more than 45 minutes in the supine position).
Type II patients have one or two of the above criteria.
Type III patients have none of the above criteria.

Thus, it is possible to have SOD without necessarily an elevation of liver function tests.

If your physician considers SOD, here is a recommended approach.  In patients whose gallbladders have been surgically removed, an ultrasound fatty meal test should be done. Patients with a positive test undergo sphincter of Oddi manometry via ERCP. In patients with a negative ultrasound fatty meal, sphincter of Oddi manometry is performed only if symptoms persist and are bothersome despite conservative treatment for other causes of functional gastrointestinal disturbance.

I am not aware of a connection between your reflux and the vagal symptoms you describe.  As a last resort, you may want to be evaluated for the various surgical options to control your reflux if your gastroenterologists have no further input.  

I strongly suggest continued followup with your personal physician.  

I stress that this answer is not intended as and does not substitute for medical advice - please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.


  

[tessa0825]

Have you tried a wedge pillow for when you sleep...They are wonderful for nite time acid-reflux...You can buy them at most medical supply companies for 24.00 - 28.00 they raise the head of your bed about 6-7 inches and stops the acid from REFLUXING back into the Esophagus while sleeping..They are kind of hard to get used to but once you do you will be very happy with the results....Most GI Dr.s recommend them for acid-reflus during sleep....Hope you get some good answers from Dr. Kevin...Take care....Tessa

[surgeon]

As a surgeon who has done thousands of biliary operations, I can say your symptoms are really not suggestive of biliary dysfunction. However, not all symptoms fit the classic pattern, and if there is any suggestion of corroboration (abnormal lab, abnormal bile duct size on sonogram or CT scan) ERCP would be a consideration. To feel and hear movement in the area is much more suggestive of intestinal issues than biliary.  Can it all be tied to your reflux? Possibly. The vagal symptoms you describe are way outside the usual; however, it is known that reflux can trigger such things as bronchospasm independent of actual aspiration. Antireflux surgery may become a consideration. The hard truth is that when symptoms a well outside the usual it can be extremely hard and frustrating, and sometimes the best that can be done is to reassure that it's not something awful like cancer,etc, and aim for the best possible control of a difficult situation.

[nadia]

Similarly to Tomskies posting, I have had chronic non-stop upper epigastric pain since before and after my Cholecystectomy. All work ups show mild chronic gastritis. I have been told this does not cause this kind of pain and am on PPI's.

It is my understanding that Type III SOD does not cause abnormal alt and ast levels. No dilation of the bile duct or slow drainage.  So why then do GI docs dismiss SOD type III?

Why is it so difficult to diagnose, when I can point to the area of pain?  It's been in the same place for over 2 years now. They can send a man to the moon but try and figure out one area of pain and doctors are completely baffled.

This experience has caused me to have a total lack of confidence in these so called specialists.

[petalma]

Would Sphincter of Oddi Type III be detected by a HIDA scan?  Is ERCP the only definitive test?  I fear that my daughter has it.  Her symptoms fit but enzymes, HIDA, endoscope, upper GI, ultrasound, CT with contrast show nothing unusual - but something is VERY unusual and her pain seems to fit with SPh. Oddi Type III.  The docs say a 16 r. old is too young to have this and that the diagnosis may not even be "real." Can anyone out there shed some light on this?  Thanks. - A Desperate Mom

[schaeff]

Anyone who thinks they might suffer from Sprincter of Oddi dysfunction really should read the comprehensive article by Dr. Sherman of Indiana University. It is on the web at:

http://www.joplink.net/prev/200111/04.html

In response to Petalma, the "gold standard" for SOD diagnosis is the ERCP with SO manometry - a procedure with significant potential for complications.  A non-invasive test, QHBS, (quantitative hepatobiliary scintigraphy) using a scoring system developed at Johns Hopkins, has had mixed results in diagnostic sensitivity and specificity when compared to SOM.

It is amazing to me that otherwise bright and logical physicians suggest "stress" as the cause of most difficult to diagnose GI problems - even when doing so defies plain common sense.  When I developed excriciating epigastric ==> RUQ pain the day after my gall bladder was removed, disabling pain nothing like I'd ever had before and that recurs 2-3 hours after every meal every single day for several years, as soon as all the blood, scope tests and CT scans were negative, my GI doc went to the stress explanation.  That this presumed that somehow my stress level increased so dramatically the very day after my gall bladder was removed never seemed unreasonable to him.

[surgeon]

the problem with SOD is that it is very hard to duplicate or reproduce the studies used to evaluate it: specifically, manometry of the bile duct is subject to many influences, including the surrounding anatomy, the exact location of the recording device, drugs the patient may be on or which are used during the procedure. So the data are not nearly as "pure" as, say, a blood pressure reading. The diagnosis of right upper abdominal pain that is like biliary pain but which is associated with normal lab and xray studies is very difficult indeed; removing the gallbladder, cutting the sphincter all have been done with success, and at least as many times without success. Manometry seems useful because it produces numbers. But it is still really unclear to what extent the numbers are actually meaningful, and useful to guide therapy. There is, unfortunately, much we don't understand in this area. Some claim to understand more than others. Whether they actually do is still an open question.

[surgeon]

the problem with SOD is that it is very hard to duplicate or reproduce the studies used to evaluate it: specifically, manometry of the bile duct is subject to many influences, including the surrounding anatomy, the exact location of the recording device, drugs the patient may be on or which are used during the procedure. So the data are not nearly as "pure" as, say, a blood pressure reading. The diagnosis of right upper abdominal pain that is like biliary pain but which is associated with normal lab and xray studies is very difficult indeed; removing the gallbladder, cutting the sphincter all have been done with success, and at least as many times without success. Manometry seems useful because it produces numbers. But it is still really unclear to what extent the numbers are actually meaningful, and useful to guide therapy. There is, unfortunately, much we don't understand in this area. Some claim to understand more than others. Whether they actually do is still an open question.

[Moppet]

Oh my God, after almost three years of suffering with pain in my chest and tests and trips to the emergency room, a 24 hour ph moniter, 2 ultrasounds, 3 endoscopes, Upper catscan, 2 ecocaridiograms, 1 stress test, one appoint with a heart specialist AND the surgical removal of my gallbladder...which had one very tiny stone.  NOT TO MENTION ALL THE THINGS I FORGOT and all the types of homeopathic and Dr. presciptions...I have finally been as close to cured as I can possible be. Pain is MUCH better and my life is getting back to normal (including my diet). I empathize with you deeply.

First, I want to say my diagnoses is ACID REFLUX...with possible esphogael spasms.  BY the WAY none of the PPI's made me better...infact I was worse on them. A rare case of wierd gerd. My GI doctor then tried an antidepressant called Amptriptaline (check spelling) 50 milligrams a day! AND low and behold my life is back!!!  I also dropped all of the PPI's that I was on and after about 1 month I felt SOOO GOOD.

Good Luck to You!!

***@****