Sphincter of oddi dysfunction

I have been to several doctors and they said theres nothing else they could do. I am left to bear my excruciating pains alone.  what are stints? is it the ercp cos they are not willing to carry it out on me as they think its too risky and I may not benefit from it.

yes, the stints are done through ERCP. Its the same procedure that's done for a blocked heart valve. Essentially the botox is there to keep the sphincter open... also, stints can be used (like straws) that are put inside your sphincter of oddi, to keep it open. Or, there's sphincterectomy... where they just cut the sphincter. That can be done through laproscopy, I believe. I don't think it has to be done through an ERCP... whcih would be safer for you. There is some risk to pancreatitis with all of these procedures, but if I were you.. I would seek out a doctor that is pretty sure they can perform another option on you, without the same worry of risk. (ie a really good pancreatic surgeon) I would vouch to say that "most" surgeons are not specialized enough to do stints or a sphincterectomy without some serious possible side effects. I know someone who went all the way to see Dr. Cotton in South Carolina (US)... He did a sphincterectomy on her (instead of botox) and it totally fixed her SOD. He did it through ERCP, and she did get mild pancreatitis, but he's a pancreas Dr so he treated the side effect, and she's GREAT now. I read somewhere actually, that sphincterectomy's for SOD done by a good surgeon are like 80 percent effective at relieving the pain (almost) permanently... You might have a reoccurence later, at whcih time... they can just re-perform the procedure a few years later. But, yeah... most people try only botox because it's temporary. Most surgeons are afraid to do the perm fix. in case they perm mess up. But, yep...if I was you... in that much pain with no perm answers... I personally, would try and find a good surgeon to reduce the risk of complications/ to try and take a chance for permanent healing. I will pray for your recovery!!~

Hello Friend,

I just responded to a post above on SOD. I came into this a year late, so i was hoping to get any advice on this difficult condition. My sister has been SO sick and can't get well. She doesn't do anything at all anymore except taking alot of pain meds. She is suffering and needs them, but i want her to know other peoples experiences so she may accept help. Id appreciate any help!! Thanks, Chare

Hi,

I have been living with SOD for about 6 years. I have had numerous ERCP's where they have tried to stretch the valve and I have had a stent. I never once had pancreatitis from the procedure. Nothing worked!!! He said they will not perform them on anyone anymore as the Risk of the valve rupturing is to high. I have changed my diet, avoid stress and get as much rest as possible. My specialist has suggested I take Amitriptyline on a low dose, he also said there was no guarantee it would work. I was in so much pain and visiting the A & E so much I would try anything. My sister who is a yoga instructor told me first to try Acupunture. I laughed!!!! She has been telling me this for about 3 years. I keep ignoring here until 6 months ago I tied it. It works!!! I can not believe it. How can sticking needles in me stop me from having this terrible pain. I have not been to the hospital once since I have been going. I still get some pain but not as often and it is manageable. ( day in bed rather than hospital and feeling sick for days after)

The Acupunture helps relax the muscle and tension around the area. I see my specialist in 2 days. If he has come up with any new medical ideas I will let you know. It is a terrible thing to have and live with. Very scary as you never know when it will happen but you know how bad the pain is. Let me know if I can help you any more.

Very important!!!! Can't believe I forgot to mention this. When she feels the pain coming on drink cold water! Sounds crazy but sometimes works. found this tip on other SOD websites.