SPHINCTER OF ODDI DYSKINESIA

[KRISTI TALLONE]

MY SISTER WAS RECENTLY DIAGNOSED WITH THE ABOVE DISEASE AND HAD A PROCEDURE DONE TO CORRECT IT.  I AM NOW EXPERIENCING SOME OF THE SYMPTOMS SHE HAD.  I AM UNABLE TO FIND ANY INFORMATION CONCERNING THE DISEASE, IT'S SYMPTOMS, IF IT IS HEREDITARY, OR WHAT CAUSES IT.

ANY INFORMATION YOU COULD PROVIDE WOULD BE GREAT.  I WOULD LIKE TO BE MORE PREPARED BEFORE I GO THE DOCTOR.

[Ruth]

I, too, have been diagnosed with a perfectly healthy gallbladder and an abnormal sphincter of oddi. After two ERCP's last week, (one to cut the sphincter to allow flow and put a stint in the pancreas, one to remove the stint) I'm still suffering. Does anyone know if there is a "cure" for this disorder and/or an end to the symptoms?

[Faith Thompson]

My son had gallstones at a very young age... he had GB removed at age 10. He continued to have very severe attacks of pain in URQ and elevated liver enzymes..he had ERCP X 2..first time they dialated his sphincter of Oddi and that lasted about 1 and 1/2 years with no symptoms..they returned and he was sent to UCSF ..this time they did sphincterotomy/papillotomy (spelling ??) anyway he has not had any severe pain attacks since ( it has been 9 months) ...The surgery is not without risks,,he hemorraged a day after surgery...but I think he would tell you it has been worth it..the episodes were quite severe and he even had pancreatitis as a result of one attack. F. Thompson

[Jan Overtuf]

I commented last August about my ERCP and the surgery on my sphincter of oddi.  I had my gallbladder out 2 years ago.  Never really thougt that was the problem becaue my pain started again 4 months after the surgery.  One year ago was my first sphincterotomy (I hope I am spelling this right).  I had it in St. Louis, MO.  I was pain free for 6 months but began to have pain again.  I was pretty depressed to have this start again.  In May of this year I had another ERCP and the Dr. removed scar tissue.  The second procedure was pretty painful the next day.  I have had one "big" attack and several little ones since.  Belive it or not, Tonic Water helps.  It doesn't taste good but does help if I drink as soon as I feel something going on.  Well, I know not to over eat, but this week was Thanksgiving!!  I had a real bad attack and vomited 12 hours later.  Today I am very sore and hurts when I walk.  My pain if right in the center of my stomach, and always has been.  I have never had pain on my right side.  I don't think I will ever have another ERCP.  My doctor says I shouldn't anyway.  I just wish there was something that could be done to help when the pain starts.  I have a precription pain pill but don't want to rely on them.  
If anyone has any suggestions, please write.  I wish I could have said today that I haven't had any problems since my May procedure but that isn't the case.  I could go on forever.  I'm sure any of you who have problems like mine could too.  We just want to be pain free.
Thanks for reading my letter.
Jan Overturf

[Kathy]

I had my gall bladder removed 4 years ago, and though it relieved my pain, I continued to have difficulty with belching.  An upper GI at that time showed mild reflux, and since that time, I took tagamet, then progressed to Prilosec one year ago.  Intermittently over the past 4 years, I would have episodes where I would have extreme pressure in my upper stomach that would radiate up my chest and neck, and back pain in the right upper quadrant of my back.  These episodes always occur at night, and I'd be awakened by the pressure and back pain.  Belching relieves the pain and pressure somewhat, but the episodes would often last for a couple of hours. These occassional episodes have increased in their frequency and severity in the past 6 months and because of that,  I have had a full round of cardiac tests, an endoscopy procedure for my stomach and esophagus, and abdominal ultrasound, and a week and a half ago had a CT scan (with contrast) of my abdomen and pelvis, plus a full battery of lab work ( for liver, pancreas, etc.) and all results have been normal. Now I have the symtoms nearly every night, plus lots of belching throughout the day.  The internist I am seeing thinks it is reflux, and has me on Acifex and as of yesterday prerscribed nitro to see if that would help during an episode.  He tried me on Propulsid, but that was a disaster, making me feel truly ill, so he took me off of it. To say I am frustrated is an understatement, and after having modified my diet, elevated the head of my bed, no lying down after eating etc. and faithfully followed my doctor's instructions things keep getting worse.  On the one hand I am grateful the tests were normal, but then again, it doesn't answer why I am so miserable.  Fear only compounds the problem wondering if the tests are "missing something".  Any input would be appreciated.  Thanks!

[Lisa Moylan]

Ruth,
When I read your comment I thought WOW - this woman has been through the same thing I have been through.  I also had a diagnosis of Sphincter of Oddi Dysfunction through ERCP.  The procedure was done on Jan. 12 and they also placed a stent in the pancreatic duct.  They removed the stent last week and my pain has come back ten-fold.  If you find any answers please write back.  I am desperately researching trying to find out more about this problem.  Thanks.  Lisa

[Lisa Moylan]

Ruth,  Please let me know if you find out any further information on your condition.  I am in the exact same situation as you.  I recently underwent ERCP and was diagnosed with SOD.  They also placed a stent in the pancreatic duct.  They removed the stent a couple of weeks and pain is back stronger than ever.  Please stay in touch.  I am researching like crazy trying to learn more. I follow-up with my doctor tomorrow.  Lisa