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Sphincter of Oddi Dysfunction Questions

For about a year I had a constant pain behind my rib cage (upper right quadrant) that felt like I had a tennis ball lodged inside me.  In May 2004 I was diagnosed with common bile duct obstruction and had an ERCP with a sphincterotomy.  About 3 months later the pain behind my rib cage returned.  In October 2004 I had an ERCP with manometry, during which I was diagnosed with Sphincter of Oddi Dysfunction.  Another sphinterotomy was performed.  Unfortunately, the procedure resulted in severe acute pancreatitis.  Four months later, I still have some inflammation, but not that severe.  I am concerned because the pain behind my rib cage is coming back.  

1)  What is the liklihood that the sphincterotomy was not successful and that the SOD is back?

2)  If it is SOD, can it be corrected using external surgical methods? Does surgery pose the same risk for pancreatitis?

3)  What risks are involved with doing nothing, assuming I can learn to live with the pain?

Thanks for your input, I really appreciate it.
46 Responses
233190 tn?1278553401
MEDICAL PROFESSIONAL
To answer your questions:
1) Studies have shown that sphincterotomy improves discomfort in between 70 and 80 percent of patients, so there is a distinct possibility that the procedure was not successful.

2) Yes, surgical methods can be done to treat SOD.  Studies show a somewhat lesser success rate of 60 to 70 percent.  Currently, the endoscopic technique is preferred as it is less invasive.

3) If there is no treatment, it is likely that the pain will continue.  There has been some cases where improvement was made without improvement, but this is an uncommon occurance.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b
Avatar universal
My mom, 57, has been dealing with chronic stomach pain for a couple years now. All tests pretty much show everything normal, that is, blood tests, ultrasounds, colonoscopies, endoscopies, and on and on. For the past year or so we've been thinking about SOD. The GI doctors say "yeah, maybe that's what's going on" but nobody gives a sure answer about it. My mom's been real scared to go down that road because of all she hears about it causing pancreatitus and, more importantly, about the possibility that it won't really help her.

Anyway, so, Im wondering, can you give me a follow up on your situation? I would love to get to know other people who have been through manometry and sphincterotomies for SOD, to see what their experiences have been like.

Thank you,

Adam
Avatar universal
Hi,
I have been diagnosed with Sphincter of Oddi Dysfunction just recently.  I have dealt with at least two episodes each year since I had my gallbladder out when I was 17 years old.  This has been going on for approx 25 years now.  I have been to several physicians about it and have had many tests ran.  My next step is to have a sphincterotomy done.  
I want to let you know of some coping techniques that have helped me.  If you are like me, I get tired of having to go to the ER each time this happens, only to be treated strangely since many ER physicians are not aware of this.  Each time they take blood to check the liver and pancreatic enzymes.  My blood tests always come back good.  The pain is awful!!!!!  Compared to a kidney stone pain in the upper right quadrant and through to the back. They also make me drink a GI cocktail.  I tell them not to bother as it is not my stomach that hurts. I'm allergic to demerol so they just give me morphine until the pain stops and then I go home. I have tried the meds that you place under the tongue, but they do not help.  A gastroenterologist suggested that the next time this happens, I should request Torodol via IV to stop the spasm.  This works real well!!!! It needs to be give via IV as intramuscular doesn't work most times.  Another coping tool if it will be awhile until you can get relief is to fill the bathtub with real warm water and soak.  This stops the pain for the time I'm soaking.  Once I get out, though it starts back.  A few times I have been able to stop it completely if I stay in for approx 45 minutes.  
I hope this is of some help for you.
Avatar universal
I've written in another forum in this area ... but let me tell you of my case. I had gall bladder removed in 1991 and was diagnosed with biliary dyskinesia in 1994. I have had innumerable ERCPs done, two sphincterotomies and yes I got pancreatitis with both. I've also been diagnosed with smooth muscle disease. I still get bouts of severe pain in clusters that put me into hospital several times a year for IV morphine therapy. The pain is acute like an arrow staight through from my ziffisternum (spelling?) to my spine. The sphincterotomies made a profoundly beneficial change to my life and even with the pancreatitis I would still go through with them again (I don't think I had a stent - in fact I'm pretty sure about it). My life post sphincterotomies is a lot better than before but as you can see it is not without pain - it is just a heck of a lot better than the intolerable pain I was in before. What I would recommend is always carrying a letter from your specialist (and keep it up to date) stating your condition and recommended therapy which will avoid you going through a heap of useless tests and delay the start of pain therapy in an unfamiliar ER. I was treated for cardio pains because the pain level was sufficient to change my T line on an ECG - ended up with nitro-induced migraine AND usual pain! Five days of this in cardio ward, I was not a happy fella ...
Avatar universal
i had my gallbladder out 12/30/04. i had five hospitalizations from 1998 to 2002 for elevated amylase and lipase levels and pacreatitis. after the gallbladder removal, i had a bile leak as a complication to the surgery. so, i never got better. we waited and waited for the pain to go away as the bile absorbed, and it never did. here it is 4/26/05 and i am still on oxycontin and dilaudid. i have been hospitalized three times since the gallbladder removal for pain. all of my labs and scans/xrays/egd/ercps were all normal. i guess i am the picture of health except for the crippling pain. i was completely worked up by well respected gastroenterologists. my brother is a cardiologist and asked his best friend, who happens to be a GI doctor, what we should do. he told me to go to these two doctors at the university/county hospital because they were the most published on pancreatic and bile leak issues (on sphincter of oddi dysfunction). so, i went to see them, much to the chagrin of my internist. my internist told me that "they like to cut sphincters" at their clinic. i am a registered nurse and have personally worked with these guys and it seemed that their patients never seemed to get better (but why would i see people that got better if i worked only in the hospital? duh!). anyway, i underwent an endoscopic ultrasound yesterday which showed a perfectly normal pancreas. my MRCP was grossly normal. so, here i am with a diagnosis of sphincter of oddi dysfunction. i am so lucky to be working with doctors that have known me for years otherwise i don't think they would believe that my pain is real. i hear stories of patients that no one believes and they suffer. i am on 80 mg of oxycontin a day with dilaudid for breakthrough pain. my career as a critical care nurse is over. i am so scared to go through the sphincter stenting and sphincterotomy. i just don't see that anyone gets any better from this. maybe it's because i just haven't met them! i only meet the ones that never get better. anybody out there ever gotten better after the stenting? i'm scared and depressed. what a life altering experience at the age of 35. i have two children; corey is 3 and ted is 18 months old. i wonder why this has happened to all of us. anyway, would love to hear from anyone with stories of this disease. thanks for listening! jennifer
Avatar universal
I had my gallbladder removed approx. 10 years ago, never had any problems, until about a year ago when I started with right upper quadrant pain. Amylase and Liver enzymes were normal except when I had the pain. Wound up having a spincterectomy and a stint place in the pancrease. It is 6 months later and back to square one...pain is back...should I go for another stint?
Avatar universal
I had my gallbladder out  4 years ago and have been to the ER
4x I have severe spasms and vomiting the only thing they ever find is 1 elevated liver enzyme then when I go to my regular doctor it is back to normal. He put me on Hyoscamine the last time i had a spell it stopped it within 10 minutes but it also made me very sleepy but i don't mind.
Avatar universal
Three weeks ago my mom had the sphincterotomy and a stent placed. The manometry showed high pressures, the duct was dilated and even "angulated." The stent was suppose to straighten the duct. She has had no relief. In fact, possibly even worse pain. Is surgery our next option? Perhaps a longer stent? We'll see. I'll post again soon.

You know there's a support group for everything in the world, EXCEPT SOD. (Just to add to the nightmare of this condition.)
Avatar universal
Amazing. These stories are shocking similar to my wife
Avatar universal
See my posting under undciagnosable RUQ pain cyst related
Avatar universal
Oh my God!  I am crying as I am reading this.  I just had my gallbladder taken out on 5/24 after over a year of the gallbladder pain.  I was doing well after my surgery until Tuesday of last week.  I have more pain now than I did before!  I went to the doctor today for my post-op and he thinks I may have the Oddi dysfunction now.  I cannot believe this.  I am 32 and I don't know what to do now.  I am scared to death.  The pain has progressively gotten worse over the last week and it is especially bad after I sit for for long periods and driving is a horrible experience now.  I read the posts and I feel just like the poster who said they had a tennis ball stuck under they rib cage.  My belly feels like its full of gas and very distended too.  Th pain goes into my back as well.  I talked to so many people who had they gallbladder out and this did not happen to any of them.  I didn't have any stones but had a 0% ejection fraction so we were certain that is what was causing the pain.  How can people live like this?  I am so discouraged.
Avatar universal
I can't believe what I'm reading (and I've been reading A LOT). Of all the things I've been reading on the internet these stories are the closest to mine of anything I've read. It's comforting to know I'm not alone.

I've been to the ER 4 times in the last 8 months. It's always the same intense epigastric pain accompanied by vomiting, shaking, hyperventilating, diarrhea. They told me the first two times it was the flu. I came away thinking I was a wimp for not being able to handle the flu. The third attack landed me in the hospital for dehydration. Like a post before the only thing that has helped so far was morphine, toradol and phenergan (the phenergan knocks me out and I don't care how much pain I'm in!!) While in the hospital they ran every test known to mankind and only uncovered a low functioning gallbladder. They removed my gallbladder but last week I had another attack and went back to the ER. This time my amalyse and bilirubin was elevated. I went back to my surgeon and he thought I had an acute pancreatitic attack. He sent me to a GI doc who isn't convinced and thinks its a sphincter of oddi problem. I'm scheduled to have a ERCP in 3 weeks. I'm scared of the complications but it seems this is my ONLY option if I want some answers. And I'm not convinved I'm going to get answers either. AND I'm certianly not guaranteed that my pain won't come back. I'm darned if I do and darned if I don't.

I'm amazed that this baffles the docs so much!!! I know they're only human but every doc gives me a different answer. And one doc in the hospital thought I was doing this for attention. Between his comments and the lack of answers I am slipping into depression. Before my first attack I was a VERY healthy, very active 36 year old woman and mother of 5. And now I'm nauseous all the time and always scared of another attack.

Doesn't it feel so lonely when noone believes you and noone can help??
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