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.

[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

[Liz from New Zealand]

I can relate to you all in the matter of sphincter of oddi problems. Having had my gall bladder removed because of constant squeezing - it had no stones but ended up like a little ball of overactive muscle. The squeezing started again one month later.Now it was the billiary tubes and of course the sphincter was getting tighter every day.  After a sphincterotomy where the surgeon said he effectively "took a chainsaw" to it the problems really started.  Now it spasms whenever it pleases and sends the liver enzymes skyrocketing. I am not keen to have any more surgery as each procedure has made it worse.  I have found great  relief by taking a slow acting nitrate drug called Imdur every morning and a muscle relaxant called Buscopan but only when the pain starts, or if I am going out for a meal and dont know what I may be expected to eat. Recently I had a course of acupuncture 32 needles for 10 days (treating the whole body not just the digestive area) and it helped amazingly. I go for top ups once a month now and I can feel it getting tighter just before the month is up. I do hope this helps you all. I would like doctors to start thinking a bit laterally.  If you can put a stent in an artery, why cant a titanium stent be put in the sphincter (titanium so the bile would not destroy it)????

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[Joe]

I had my gallbladder out early March. I continued to have gallbladder like pain in Right Upper Quad. This pain is somewhat of a burning and radiates to back and up into shoulder. I had bile duct stint put inplace and this work but when removed back to same old pain. The y did sphinterotomy when the took the stint out. I get the feeling that my GI doc thinks I am lying. I went to primary care doc (GI sent me thee when I complained of back spasms releated to RUQ pain he said I have a skeletal-muscular problem) and he agrres with me. He put me on amytriptaline (a muscle relaxer used for GI system) and I have been taking Ultram for a couple of months.

[David Bugbee]

My wife had her gall bladder out in January of 1999, after a month of severe pain in the right upper quadrant area.  One year later, this pain came back and after two months of tests, she finally had an ERCP and they cut the Sphincter of Oddi.  Three months later the pain came back and she had another ERCP where they again cut the Sphincter of Oddi and put a stent in.  After each of these procedures, she suffered from pancretitis.  Approximately two weeks after the second ERCP, the pain has come back and the doctors are now recommending Pain Management to as the only alternative.  This has been a very frustrating experience and I was wondering if anyone else has gone through this and had any recommendations.  The pain gets so bad that she cannot work, take care of kids, etc. Any help would be greatly appreciated.....

[Lynn]

To Kathy from Tuesday in Dec. 28, 1999.  What is going on with you sounds very much like myself.  Although, I had a pulmonary embolism in Oct. of 1999 and of course I always thing that all my symptoms relate to that.  But now I am beginning to rethink how I have had my gall bladder out and still have all this discomfort with the back pain that you mentioned along with the belching and pain in my abdomen.  I feel bad that anyone has to go through all of this pain but on the other hand it is good to know that I'm not the only one to feel like this.

[scarlet]

Re Lisa M,     I to underwent an ERCP.  last year and was diagnosed with SOD.  Next Jan. I will be going for a Manometry for Achalasia..I have been on a Low Fat diet with med. and I find it help a lot.  I also carry my Nitro everywhere but so far haven't had to use it.  Hope this info can be of some help.

[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

[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!

[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

[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?

[yvonne]

My mother has been having severe abdominal pains.  The doctors removed her gall bladder on 10/19 and sent her home from the hospital on 10/20.  On 10/28 she was readmitted into the hospital.  At first the doctor's claimed that her extensive pain, nausea and vomiting were side effects of the surgery.  However, yesterday they completed an ERCP and Sphincter of Oddi manometry.  Today she is still vomiting and complains of nausea and soreness in her throat and chest and stomach areas.  I hope that this cures her symptoms.  However, I do not feel positive because I not that several of the individuals listed suffer for long periods of time after this procedure is completed.  I am desperate for additional information or suggestions.  My mother is 59 years old and suffers from kidney failure.  She doesn't drink and she is not diabetic.  We are sincerely looking for a cure for her ailment.

[Lela]

Elizabeth,
You mentioned in an earlier posting that you had an appointment with a new Dr. on 11/1.  I'm curious if you found out anything.  The symptoms you wrote about in your original posting are almost identical to my 13 year old son.  He is having another ERCP along with sphincterotomy next week.  He has kept down very little food in last 10 days and his pain seems to be getting worse.  Good luck to you and let us know if you find out anything.

[angela]

Where can you go to get this surgery - where did your sister go, Kristi?  Was it laproscopic?

[angela]

Does this condition cause alkaline reflux gstritis - especially if there is no gallbladder and liver and pancreatic tests are normal?

[HFHSm.D.-Gastro-rf]

Sphincter of Oddi dysfunction is a failure of the sphincter of the bile duct to relax appropriately.  It is NOT a hereditary condition.  The symptoms are vague right upper quadrant pain.  It is necessary to exclude gallstones and pancreatic disease as the cause for any pain.

[Elizabeth]

Dear Kristi,
      Thank you for saying that. I have been thinking very hard about a second opinion and even made an appointment but I am feeling like I should just wait. My appointment isn't till November 1st which just amazes me.
      Anyway, thanks again. Your thoughts help me feel better about my decision.
                          Elizabeth

[Elizabeth]

I have been having abd pain but it is mostly on the left. When it gets severe it is all the way around my upper abd. I had an ERCP done among other expensive tests and while they couldn't find anything wrong I ended up with pancreatitis and in the hospital for 5 days. They have been 'watching' me now for 6 weeks hoping that my pain will go away. My GI physician mentioned sphincter of oddi dysfunction. I work in the hospital and it is my impression that many gastroenterologists are now performing the procedure. I don't have any problem with my gall bladder. Every test has come back negative yet my abd. pain is just as bad as ever. I guess I am just looking for as much information as I can find...

[Kristi]

ELIZABETH, THIS SOUNDS A LOT LIKE WHAT HAPPENED TO MY SISTER WITH THE ABD PAIN.  SHE NEVER HAD A PROBLEM WITH HER GALLBLADDER EITHER.  YOU SHOULD GO TO SEE ANOTHER GI BECAUSE SHE'S BEEN THROUGH ALOT IN ORDER TO FIND THE PROBLEM.

[Kristi]

LAUREN,
THERE ARE DOCTORS ALL OVER THAT DO IT.  MY SISTER SAW SEVERAL DIFFERENT GASTROENTEROLIGISTS{SP.?} BEFORE DECIDING TO HAVE IT DONE.  ALL OF THEM COULD DO THE PROCEDURE.  HOPE THIS HELPS.