Sphincter of oddi dysfunction

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I had botox injection into my ampulla yesterday for the treatment of SOD 3. I am in so much pain today. please does anyone have similar symptoms. if pains could kill I would be dead by now.

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  • Posted

    I also had an injection of botox... only for my pyloric valve. Most people respond well, but I also was in SERIOUS pain afterwards. The good news is that the botox injection will wear off in about 1 month (contrary to what a lot of people say about them lasting a super long time/ thats only if you have multiple ones injected close-together.) Anyways... I also had ringing in my ears from it, facial paralysis etc. I honestly think that some people just can't handle this toxin. I won't be getting another one. Mine was for severe gastroparesis. I would goto the ER to be checked to make sure there are no more serious complications. Because of my pain, I went and had a CT scan. All was well, and again- pain wore off after 4 weeks (and other side effects wore off too)... I would vouch for another method of treatment for your SOD, if you haven't exhausted everything. These things- my disease and yours, are not the easiest to treat. I am personally trying to avoid a gastric pacemaker. Have you had stints before? I know there is risk for pancreatitis... but less so, if you have a good Dr. Maybe you need a new Dr??? I hope the botox injection didnt jack you up, so that you have pancreatitis. Are you on Creon or anything? Id seriously look into digestive enzymes at this pt, if not. Hugs and my prayers are with you. You will make it. Just remember to be your own advocate and let them know you are IN PAIN... and they HAVE to CARE. It's their job. if they don't ... find a new Dr. 
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    • Posted

      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.
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    • Posted

      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!!~
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    • Posted

      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

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  • Posted

    Hello Friend,

    It has been a year since this discussion about SOD started, so I'm coming in late. Id like to know if anyones got any relief from this awful condition. My sister has been suffering tremendously, but she won't let any family members help. She has gone thru MANY procedures to diagnose and find relief, but now she only takes pain meds, and vomits nnonstop. I'm certain she has type 3 and i want to be able to offer hope from someone who's been through it. Please help! Any ideas or experiences will be most appreciated! Thanks,

    Chare

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  • Posted

    Hello Friend,

    It has been a year since this discussion about SOD started, so I'm coming in late. Id like to know if anyones got any relief from this awful condition. My sister has been suffering tremendously, but she won't let any family members help. She has gone thru MANY procedures to diagnose and find relief, but now she only takes pain meds, and vomits nnonstop. I'm certain she has type 3 and i want to be able to offer hope from someone who's been through it. Please help! Any ideas or experiences will be most appreciated! Thanks,

    Chare

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    • Posted

      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.

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    • Posted

      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.
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