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Sphincter of Oddi dysfunction, what now?

Hi there, after suffering with chronic pain in my upper right quadrant for the past 8-10 years I finally got referred to a gastroenterologist today and after a thorough consultation, I was, for the first time in my life, diagnosed with and given a name to my condition - sphincter of oddi dysfunction. The Dr was quite certain that my condition was due to my stressful job and commented that it was a rare condition he had only seen in 4 other patients - all of whom were women in a similar position. I had 4 or 5 hospital stays, A&E visits over the years and each time bloods are taken and results normal. My Dr thinks that the condition will settle over the next couple of years but I'm inclined to disagree. When the episodic attacks come on I am doubled up in pain and though bizarre, I find lying on objects such as a hard deodrant can or similar hard object and rolling around on it gives me a little bit of relief but not enough to stop me wanting to admit myself for more pain relief.

I really don't want to face yet another 2 years of just 'waiting and seeing,' so am curious to know of any other options to investigate, treat, prevent or deal with the attacks please?

Any comments would be appreciated.

Many thanks

Rachael


This discussion is related to Sphincter of Oddi Dysfunction Questions.
61 Responses
1050938 tn?1311557178
If this is, as the doctor claims, Sphincter of Oddi dysfunction, there is probably no amount of rest, relaxation, or "wait-and-seeing" that is going to have any real effect on the symptoms you're having. This is a PHYSICAL problem, not psychological. It makes me wonder if your current Gastroenterologist got his medical degree out of a cereal box, because SOD is a narrowing of the valve that channels bile and pancreatic juices. The main treatment I've seen for that is to widen the valve surgically to prevent the bile from backing up and causing pain. A scary prospect, I know, but so is living in agony with no relief for 2 more years. It will probably be best at this point to consult with a new Gastroenterologist who has your best interests at heart. Try RateMDs.com or Vitals.com to look up physicians in your area and see how their patients rate their overall performances. USEFUL!!

Hope you get relief soon!
Avatar universal
Hi,
I was living with the same pain for 2 years when I was diagnosed with SOD.
The only way to be certain is to have a ERCP with Mannography(?), meassuring the pressure of the Sphincter of Oddi and than have through an ERCP a Phincterotomy ( cutting the muscle ) done.
Stents, Balloons and Botox Injections into the sphincter are also an option. The risk of this procedure is pancreatitis.
Unfortunately all this did not work for me. I had 8 ERCP's done before a surgeon was called and they had to do a major surgery called transduodenal Sphincterotomy with minor pancreatic duct sphincteroplasty. This involved a 8 day hospital stay and a long incision on my belly,- very painful.
I had the surgery done on March 4th and I am still in pain. I lost 70 pounds in the last 2 years because of vomiting a lot and my pain. I still cannot keep any solid food in . I have to go for a follow up back to the surgeon,- lets see what he has to say than.
You need to find a different doc. ERCP is the only way to diagnose SOD. He should know this.....good luck to you.
Avatar universal
I've suffered this same pain on and off for years and have not had a proper diagnosis although I know I have chronic pancreatitis.  I even saw a general surgeon who could not help at all recently, so I went home, got on my computer and discovered sphincter of Oddi dysfunction.  What I discovered quite by chance is that calcium channel blockers are sometimes prescribed.  They relax the sphincter muscle and it eases the pain.  Why I am certain that SOD is my problem is that I was on CCBs for BP but stopped taking them about a month ago when I suddenly got an endless dose of pain in my right shoulder blade which is what led me to the specialist.  I started taking the BP meds again 2 days ago and the pain has gone.  I am so relieved.  
Avatar universal
Hello,
I have been experiencing this pain since I was 15 and I an now 22. Being male my doctor said it was a rare case but all the signs point to sod. I'm having some further tests so have been given no prescription pain relief yet. Although he recommended an over the counter anti-spasmodic drug used for IBS. It's called mebeverine hydrochloride. It has different trade names but the mh is the active ingredient needed. I tried taking this the day after the pain when the pain was just dull and I felt better. Hope this helps as the pain is ruthless!
Avatar universal
Rachel
I have had SOD for approx 4 years and have had every test going and been hospitalised several times
However I now have botox injections which I have been having for about 2 years and I am completely pain free. I am only one of a few to have the advantage of being able to have this done as my Consultant at Southampton General Hospital is an expert on Pancreatic diseases and applied to the GMC to do this procedure in the hope that it may work.  My consultant is extremely pleased with the results and so am I!! I have the botox injections into the spincter of oddi muscle approx. every 4/5 months and while it is not pleasant to have done it has left me pain free.
1 Comments
Hello. Would you mind sharing the name of your consultant at Southampton hospital please?  I am desperate for a consultant here in the U.K. Who knows something about SOD!
Avatar universal
Hi there.  I'm glad that the anti-spasm drug is relieving your pain.  I'm a 27 y/o female with post- gallbadder removal pains similar if not worse than before surgery.  I'm thinking now that it might be SOD, and have been trying to research non-invasive treatment methods.  I have my first post op follow up with my surgeon tomorrow and i'm going to bring this up.  I appreciate your feedback about the medicine and only hope that if i do have SOD, i might get relief from the meds as you have.  Are you still relatively pain free now?  I hope so.  Any advice you might have for me would be so helpful right now.  Thanks!  God bless.  
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