Sphincter of Oddi Dysfunction Questions

[SuesQ]

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.

[dakotagal]

I have been doing some research to try and explain some of my gallbladder symptoms.  I am scheduled to have mine removed but my symptoms are not "in line" with most gallbladder dysfunctions.   My pain comes when I sit down.  It feels like a tennis ball is stuck under my rib and back and it is impossible to drive for longer than 20 minutes or so.  I have only seen one similar comment on this site and it was from someone who already had their gallbladder removed. Can anyone comment that might've had this symptom and if they had any luck after their gallbladder was removed. I hate to have an organ removed and it ended up being the sphincter of oddi that was the cause of the pain. I would appreciate any advice. Thanks.

[Marcie R]

I am so glad that I found all of this wonderful information. I thought I was alone.  I had to diagnose myself.  I am 36 years old.  I had my gallbladder out 12 years ago.  About 11 years ago I started having pain in my upper stomach that circled to my upper back.  I would get flushed, hot flashes, I would have to strip my clothes off.  Sometimes I would have to vomit, sometimes diarrhea.   The pain is horrible.  I would go to my Doctor and he would to tell my it was muscle spasms, acid reflux, gas, etc.  To this day, almost 12 years later my Doctor still does not know what it is.  I have told him about the horrible pain, he has prescribed Toradal, Soma, Vicodin, just to name a few.  Now I think that some of these meds made the attack worse.  One of the things that helps get thru my attacks are walking around the house rubbing my stomach furiously and then lying down on the bed while my husband rubs my back as hard as he can.  The attacks normally last 2 hours.  The longest two hours of my life.  At my house we call them the "freak out pains".  I have been to ER once and was hooked up to a heart monitor, ekg, etc.  They thought I was having a heart attack because my chest was hurting.  They finally gave me toradal via IV.  That helped SO much.  I have been doing research on this for the past two weeks.  I plan on printing all of this out and taking it to my Doctor, and telling him I really think this is what I have.  It is so wonderful to know there are other people out there that have this.  I would love to talk with any of you about this.  Please email me at ***@****.

[tarczely]

hi all,
just wanted to post my story after 3 1/2 years of in and out of the hospital with what they said was cornary artery spasms...i have been on so much meds and nitro etc.  well each time i would go in with this servere pain after staying at home trying to tough it out and taking to vicadin for the pain i would go and get admitted and get morphine which would double me over....so then they started given me toradal iv.  which helped alot.  
i alway keep saying this is somehting to do with eating i would eat pizza not even leave the resturant and pain would start, sometimes just drinking my am coffee.
and the other sign was that my liver enzymes would go up everytime i would be admitted, the last time 10x the normal that i when they did the spinterromty (spell) well that was 2 weeks ago and iam 90% better i have gone from taking 2 pain pills a day to one a week.

i still have to go back to the specialist and they said they might have to cut a little more to make it go away totally!

but who would have thought I was hospitalized 3 times just in june to give you an idea of what was going on and had two heart caths in the over three years.

it finally took me to say wait!!!!!!!! this is nuts you guys are not listening to ME!

feel better everyone, and I guess I was lucky no side affects from the sugery, I had to eat very little for about a week.

good luck email if you want to more lynn at ***@****
beleive i know what you all are going thru, had my liver enzymes not been so bad I still don't think they would have beleived me!

[ginnsu]

I think all 4 of my attacks have happened within 2 days of starting my period too. My ob/gyn said there isn't anything related that would cause stomach pain but I question that. I also wonder if my attacks are related to the ibuprofen I take for cramps. My doc says I'd have to take large amounts to cause the pain I suffer but I also question that.

Has anyone else seen a connection between their attacks and their cycle???

[Moonflowerpc]

I have had a MRCP (with normal results) done and am now scheduled for an ERCP 6/28.  I too am terrified of getting pancreatitis, having been in pain off and on since 1991.  My gallbladder was removed LAP in 1992 in hopes that would get rid of the right upper quadrant pain but did not.  The pain has progressively gotten worse over the past year.  I've also had  an endoscopy, upper GI and colonoscopy, (all with normal results) in January 2005.  My blood work is always normal, which confuses everyone. I guess because they think something "has" to be elevated.  I was diagnosed with gastroparesis in 1999 but since have been told I do not have it....go figure.  Several years ago it was noted in one of the CT scans that I have a fatty liver, which I guess could be due to my having hyperlipidemia.   This pain is very real and affects every aspect of my life and is very depressing.  I do not take any kind of pain meds as I would not be able to work.  Every day is a marathon just to get through the day.  The only thing that helps is to sit in my recliner or go to bed and rest on my left side until the pain gets better.

[ginnsu]

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??