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Sphincter of Oddi Dysfunction

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hazel5
hazel5

I was struggling with Sphincter of Oddi Dysfunction but feeling it was not worth the risk of pancreatitis to go ahead with the endoscopic sphincterotomy and would like to share my success using self-administered acupuncture.

My SOD had two pain styles. My daily pain is very successfully managed (99% pain free days) using 30mg amitriptyline each night and 10mg Buscopan 3xdaily. Before drugs my daily pain was so bad that I was hardly eating - not a long term strategy.

I also get (used to get) episodic severe night time pain attacks. The upper gastric / chest area pain is extreme (as you'll know if you have SOD) and I used to take 20mg oxycodone. Each morning after an attack I woke with migraine, vomiting and general weakness, needed a day in bed. These night time attacks became worse and more frequent until I started acupuncture.

A GP friend taught me to do acupuncture to myself, the most useful points are GB34 and LR3. I do electro-acupunture weekly as a preventative measure, since March 2012. My night time attacks are now infrequent, very mild indeed, and I can stop them by using manual needling in GB34 only. I don't even have to get out of bed, go straight back to sleep and can get up and go to work as usual in the morning.

This has transformed my experience of this horrible condition.

Happy to discuss further with fellow sufferers or medics. Planning to present a paper at an acupuncture conference soon

11 likes, 149 replies

149 Replies

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  • gerryc
    gerryc hazel5

    Posted

    Many thanks as I start the journey.

    Regards

    Gerry

    • hazel5
      hazel5 gerryc

      Posted

      Hi Gerry,

      I have now published a case report paper that is open access so you can download it and take it to your doctor or acupuncturist. Go on to Google Scholar and search Walter and Curtis Self administered electro acupuncture provides symptomatic relief in a patient with sphincter of Oddi dysfunction. It is published in Acupuncture in Medicine.

      Let me know how you get on. xx

    • maureen33532
      maureen33532 hazel5

      Posted

      Hazel

      Hello from Ontario canada. I am elated to read your account and the possibility that electro acupuncture may work for me. After seven years of trying every possible drug..I am desperate to try your method. 

      Where did you go to get trained regarding the procedure? Did you have to purchase your own equipment. 

      Pay very worse attacks are always during the night..I have always assumed that positional. Gravity has something to do with this. 

      I teach ( or try to). Nightly attacks this entire week prevented me from a much planned for return to work. 

      Please advise ASAP...I really would appreciate it. 

      Have you found any other literature that supports this. 

      Thanks  again. 

      Maureen from Canada. 

    • hazel5
      hazel5 maureen33532

      Posted

      Hi again Maureen,

      I already replied to your other mail. I knew socially the doctor that taught me, although he lives in southern England and I am in Scotland. I stayed with him and his wife for 3 days and he trained me on 3 consecutive days. He gave me a box of needles and a sharps disposal box to take home so I could start immediately with manual acupuncture.

      Given your recent severe episodes so close together, I would suggest getting yourself to a medical or traditional acupuncturist as soon as you can and have them treat you every 2 or 3 days for a couple of weeks. In addition, try to fine a practitioner, preferably the same one, who will show you how to locate point GB34 on your legs and who will show you how to needle safely, and give you some needles and a sharps box to take home. I say this because early on, when I still used to get some night time attacks, I would insert needles at GB34 and the pain would just switch off in about 10 minutes and I could go back to sleep and wake up feeling fine in the morning.

      Several experts in North America and Australia said they were not surprised to read of my success.

      Very best wishes

      Hazel

    • maureen33532
      maureen33532 hazel5

      Posted

      Thank you Hazel.  What a fascinating  paper that was a to read!! How fortunate for you ( and now, for us), that someone finally took you seriously. I will do my utmost to find a acupuncturist....is there a regulating body for acupuncture facilities? I know that there are several in my area..how do I screen? 

      Did you get a chance to view the video? Thank you so much for the information.   Very much appreciated. 

    • hazel5
      hazel5 maureen33532

      Posted

      Hi Maureen, I am sorry I don't know much about regulation of acupuncture in Canada, but I've heard it said that Google is your friend! Try searching to see if there is a Canadian medical acupuncture society or association. Ask your GP if they know a reputable acupuncture practitioner. GB34 is the main point you need and it is not risky to use.

      Take a copy of my paper with you and do share your progress. I am thrilled if I can help anyone else get their life back.

    • maureen33532
      maureen33532 hazel5

      Posted

      Thank you so much Hazel...Google is my best friend...it s how I encountere you and found your great research paper that may save my life. 

      Please wish me luck Monday as I begin my phone calls. You can absolutely bet that u will be armed with your paper. Many a many thanks. 

      I will keep you posted. 

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • gerryc
    gerryc hazel5

    Posted

    Is this the paper that costs £27 to download?
    • hazel5
      hazel5 gerryc

      Posted

      No! My paper was made open access and is free to download smile
  • clarissa1975
    clarissa1975 hazel5

    Posted

    May I ask what this is and what kind of pain it causes? I have some pretty bad pain after my gallbladder was removed on an emergency basis for stones obstructing the bile duct, but I do not have a regular doctor and don't think I saw a gastroenterologist, or if I did, I didn't know it since I had surgery after being in the emergency room. This was fifteen years back. 

    Since then, I have progressively bad pain in my gallbladder area after eating that reminds me of labor pains. Is this like the pain of sphincter of oddi problems? I've never heard of this before, Googled it, and see it has pain with it. Does SOD cause a pain like a knife in your gallbladder region after eating? Thank you. I have limited funds and am trying to figure this out before seeing a doctor because they are costly (I live in the U.S. and have poor health insurance). 

    • hazel5
      hazel5 clarissa1975

      Posted

      Dear Clarissa, your pain sounds as though it could be caused by SOD. The sphincter of Oddi is at the bottom of the common bile duct where it comes together with the pancreatic duct and these two ducts empty into the gut. If the sphincter malfunctions it can cause pain. This is not very well understood by medical researchers. A well informed patient recently got relief from having the remnants of his cystic duct surgically removed. You could perhaps also find some useful information from reading papers available free via Google Scholar. Search for sphincter of Oddi dysfunction and for post cholecystectomy pain. You might need to have Wikipedia open to look up all the medical words you are not familiar with, I totally did! Good luck and if you can manage it, go and see a gastroenterologist (thank goodness for the National Health Service )
  • gerryc
    gerryc hazel5

    Posted

    Thank you Hazel but the only article taht I can find is:

    The abstract/extract view of this article is free (link available in right hand box).

    Access to the full text of this article requires a subscription or payment.

    Full text

    Training in self-needling and performing it as part of a clinical trial: the practitioner and patient experienceAcupunct Med acupmed-2014-010708Published Online First: 6 March 2015

     

  • Dreamy82
    Dreamy82 hazel5

    Edited

    Can anyone tell me if SOD type 3 can also give ULQ pain? For 3 months now I have had symptoms of mild pancreatitis (feel epigastric pain mostly after eating or at night - sometimes on the left and at times on the right side, and radiating to my back), and all my results are clear (ultrasound, CT scan with contrast, MRI and MRCP, blood tests), so doctors see no cause for these pains and mention some kind of functional problem. Does that sound familiar to anyone?
    • evica
      evica Dreamy82

      Posted

      Hello, the pain  you have described is very similar to mine. And all of my results are also clear, ultrasound, MRI, blood tests, gastroscopy, colonoscopy. It has been going on for 15 years now, it started 7 years after my gallbladder  had been removed, right after my first child was born. I was never fat, I don't eat fatty food, my colesterol is fine. The doctors told me I was healthy,  but now I am sure to suffer from SOD type 3. All the symptoms are there, the pain that can be horrible, almost always at night, starts around midnight, and Buscopan can help, but every time , sometimes is so severe that I have to go to the IR. Now I take Buscopan every second night before going to bed, I eat almost nothing but bread, chicken soups, yogurt, bananas, and carots. Is there anything that can be done in order to prevent these attacks? I did noticed that during the summer I feel better.
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