Frequently Asked Questions:
In this section we'll cover some questions that you may already have asked, will ask, or maybe haven't even thought about yet. The purpose of this page is to cover information that you can present to your Dr. or reference when you need it the most. I must aknowledge that I am not a Dr. and most of the information I post is strictly from experience. If I can link you to other resources with solid history, they will be hot-linked.
What is Sphincter of ODDI Dysfunction?:
- The Sphincter of Oddi is a muscular valve that controls the flow of digestive juices (bile and pancreatic juice) through the ampulla of Vater into the second part of the duodenum (First part of the small intestine). The Sphincter bascially spasms causing the symptoms listed below.
- SOD is usually only considered in patients who have undergone cholecystectomy (Removal of the Gallbaldder).
What are the symptoms of Sphincter of ODDI Dysfunction?:
- Pain behind the breast bone radiating around to the back (usually center of back, or straight through). This is what my wife suffered with everyday.
- The major presenting symptom in patients with sphincter of Oddi dysfunction is abdominal pain.
- Pain/Pressure under rib-cage that can radiate around to your back.
- The pain is characteristically sharp, postprandial, and located in the right upper quadrant or epigastrium.
- The pain may be associated with nausea and/or vomiting, may last for several hours, all day, or everyday.
- Fever, chills, and jaundice are uncommon symptoms.
- Patients may also present with acute recurrent pancreatitis.
- SOD can be tricky to diagnose because the symptoms mirror other common, more well-known issues such as: GallBladder dysfunction, IBS, Costal Chondritis, GERD,
Esophageal spasms, pancreatitus, and much more.
What triggers the distinct pain of Sphincter of ODDI Dysfunction:
- Stress and anxiety (a definate trigger for my wife)
- Pain can or cannot be trigged by Caffeine (a definate trigger for my wife)
- Greasy foods
- Alcohol (Vodka, Rum, Whiskey, Rum..etc)
- Certain medications:
SSRI's, Pethidine, Morphine,
- Larger meals, regardless of content
- Lumina distention of the gut
- Not eating frequently
- Large vitamins or various pills
How is the Sphincter of ODDI Dysfunction classified?:
- Type I =
Patients will have definate readings on laboratory work and through X-rays; elevated liver enzymes in blood work and dilated bile ducts on an Ultrasound or CT scan).
- Type II = Patients will have definate readings in either blood work OR scans, but typically not both.
- Type III (What my wife had) = Patients have normal blood work, normal scans, but still experience the common symptoms and issues related to SOD.
- Type I and Type II patients COULD have a stone in the bile duct (depending on pathology).
- Type III patients are tough to diagnose and some Dr's are skeptical about performing any procedures.
What can be done to fix the Sphincter of ODDI Dysfunction?:
- Proper Diagnosis = First off, you have to make sure this is what you have. The SOD can be difficult to diagnose in most cases because a larger percentage of Dr.'s are not familiar with the overall dysfunction. CT Scans are basically useless. You're best bet is bloodwork and either an MRCP or ERCP. SOD is usually only considered in patients who have undergone cholecystectomy (Removal of the Gallbaldder).
- Medication = Some medication can be used to relax the SOD muscle. Calcium Channel Blockers and Nitrates have shown positive results in treatment of SOD.
- Botox Injections = This procedure will relax the muscles and assist or prevent the spasming.
(Magnetic Resonance Cholangio-Pancreatography) =
This procedure is good for checking the biliary and pancreatic drainage systems.
- ERCP (Endoscopic Retrograde Cholangiopancreatography) = This procedure checks the "squeeze pressure" of the main bile duct of the Sphincter of ODDI and pancreatic ducts drain. The ERCP is often used to cut the muscle, relieving the common symptoms of pain. There is a chance of suffering an attack of pancreatitis. For this simple reason an ERCP is usually done only after other simpler tests have been exhausted.
- Sphincterotomy =
The sphincter is separated either by simply stretching or cutting. Cutting the muscle prevents spasm and temporarily weakens the muscles. Both methods help the underlying area to heal. This can be done when performing an ERCP.
- Sphincterplasty =
Performing a complete sphincterotomy at open surgery. Consult with your Dr. for more details.
- Relapses occur in about 1/3 of cases (Per Dr. Cotton)
What are the risks of performing the various procedures?:
- Medication = Side effects can include the typical vomiting, nausea, low libido, depression, or no relief.
- Botox = This procedure is short term (6-12 months). Consult with your Dr. for specifics.
- MRCP = Is purely diagnostic. Direct intervention is not possible at this time.
- ERCP =
The main risk of ERCP is pancreatitis, which occurs a few hours after the procedure in 5-10% of cases. It usually settles in a day or 2, but can last for several weeks. When sphincterotomy is done during ERCP there is also a very small risk of bleeding or perforation, which may require surgery.
- Sphincterotomy = Reference this link (Downloadable Document)
- Sphincterplasty = Reference this link (Downloadable Document)
- Per Dr. Peter Cotton: "ERCP and sphincterotomy in this context is potentially VERY risky. Pancreatitis rates of up to 30% have been reported. Patients should seek out tertiary centers that do manometry.
We/they may not understand the condition completely, but we do know how to reduce the risks of the procedures."
Do you know of any Doctors or references that I can consult with?:
- To start with, these contacts/references WILL most likely need a referral from your Doctor.
- These contacts/references were obtained through personal experiences of SOD patients like you and my wife. They are proven and know ALL about the sphincter of oddi dysfunction.
- #1 - Please visit this site:
www.clinicaltrials.gov Per Dr. Peter Cotton;
"This website gives details of the EPISOD study, and the collaborating centers. The NIH has funded ($7m) for a very careful research study in SOD III to try to bring better clarity to its existence, diagnosis and treatment. I am the Principal Investigator at MUSC, and 6 sites around USA are recruiting. We hope that this will better identify those people who may benefit from sphincterotomy, and, equally important, those in whom ERCP treatment is both useless and harmful."
- #2 - My wife's Doctor: Dr. Timothy Kinney (GI Department) at the Hennepin County Medical Center
- #3 - Dr. Peter Cotton: This Dr. was mentioned in the thesphincterofoddi.com blog and was kind enough to clarify some of the facts listed on our website. Dr. Cotton is located in Charleston, South Carolina.
Advice from us!:
- Log Everything = If you haven't started logging everything, DO IT NOW!! We didn't start until 1/2 through the process. What we learned throughout the process is that Dr.'s go by previous records. Most of the time they just scan through them, possibly missing important details. We saw one Dr. that said it was "Chronic Pain" that people get and prescribed her medication, I asked him if he looked at her records and he straight-up said "NO."
- Diet Log = Start by trying to figure our what your triggers are. Keep a diet log of when and what you eat. If something triggers an "attack", log it and the time. Until you find a permanent solution, maybe you can help control the pain and attacks.
- Medical Visit Log = I can't stress how important this one is. We spent and wasted probably 70% of the time transferring records and repeating the same thing to different Dr.'s. even though they said they read over the records, it's the same questions; "What's your pain", "Where is it located", "Do you smoke", "On a scale of 1-10, what is your pain?" blah blah blah. Eventually I kept close track of EVERYTHING and when we went to a new Dr. I handed them a copy of THIS - CLICK HERE!
- Ask questions = When you get a new Dr. or even if something comes to mind, question them. Dr.'s that are not driven by ego will listen to you. My wife was somewhat reserved but I was more aggressive and to most Dr.'s they did not like me because I had a voice.
- Stay Strong = I know it's tough to keep your head up but it's important to keep the faith and never give up! If you stay persistant and keep looking, you WILL find a solution.
- Update 5.20.2010 = My wife has been on the prescribed Amitriptyline dosage since the procedure. She is on 25mg EOD (every other day) and lives a normal healthy life. If she tries to quit the drug or goes longer than 4-5 days, the pain and discomfort will slowly come back. As a suggestion, you could possibley as your Dr. to check into this as a solution for you before any surgical procedures are performed or before you're given every medication under the sun.