Sphincter of Oddi Dysfunction

Hi Zara, this procedure, sphinterotomy, has helped some people but there is weak understanding of which patients might find it helps. Some people who find it helps then find the benefit wears off. Having this procedure carries a risk of getting pancreatitis, which is serious and can be fatal. I tried acupuncture as a potential solution in order to avoid having the sphinterotomy. My personal feeling is that for many patients it would be well worth trying acupuncture before resorting to sphinterotomy.

Best wishes, Hazel

Yes, sounds like it could be a sphincter of Oddi problem. It is a very poorly understood issue. I have focused on dealing with the symptoms. Look further up this discussion for a link to the paper I had published on doing self acupuncture, all the details of my successful approach are there. Print it out and take it to a reputable acupuncture practitioner and give it a good try.

Best wishes, Hazel

Dear Orange Poppy,

Yes, the acupuncture still works for me. I have reduced the frequency to once every 3 or 4 weeks. I have also reduced the dose of Amitriptyline to 20mg each night.

Best wishes

Hazel

Thank you! Did you have burning as one of your sypmtoms? I've got an appointment with a accupunturist for Friday.

Oooops, one more question. How long does it take for the Amitriptyline to take effect? 

I had what I would describe as a burning type pain in my upper abdomen every day, worse after eating anything. The Amitriptyline deals with this. The severe pain of the night time attacks was way worse than a burning pain.

Do print out a copy of my paper and take it with you to the acupuncturist.

Hope it goes well.

Hi Gem, what country are you in? If UK, look at the website for the British Medical Acupuncture Society, they have a list of doctors on their website. You can find them on Facebook too.

Have you printed out my paper and shown it to the acupuncturist you went to? I would also tell the practitioner that you want to learn how to do it yourself. It might be worth travelling to find a BMAS practitioner who will tach you. Message them on Facebook (you can mention me).

For my daily pain (distinct from the severe night time pain attacks ) I take Amitriptyline. If you have not tried it yet, ask your GP. You would normally start on 10mg every night then go up to 20 then 30mg if you find no bad side effects. The side effects I got were dry mouth and drowsiness but a. they were mild compared to the SOD pain and b. they wore off. The Amitriptyline takes a while to start working so stick with it.

Best wishes

Hi yeah I'm in Northumberland will have a look on website now and see what I can sort thank you very much for info

Ok let me know if you get no joy on the website. A few of the BMAS people are really keen on enabling self acupuncture. They do training days for practitioners to train them how to teach their patients.

Hi hazel thanks for all info I have found someone who is going to show me how to self acupuncture looking forward to it pray it works can i just ask did it work straight away or did you do it a few times also I noticed you said you couldn't eat is this still the same or can you eat normally now I'm currently living off mash potatoes and toast all I can bare at the moment thanks gem x

That's good news, I really hope it works for you. Take notes and photos during your training sessions. I do recommend based on my experience that you focus on points GB34 and LR3 2/3. Don't bother with points on your stomach. Do print out my paper or make sure your acupuncturist has a copy.

For the severe pain attacks it worked immediately as an intervention during an attack and it took a few months before I stopped getting pain attacks. I still get occasionally woken by what feels like a spasm but there is no pain. It's weird but it also stops if I just press my fingers into point GB34 on my legs.

See my post above about Amitriptyline, this deals with my daily pain and I could eat normally about 6 weeks after increasing to 30mg a day. Ask your GP about it.

Good luck xx

https://patient.info/forums/discuss/sphincter-of-oddi-dysfunction-38010?page=1#2511760

Hi Hazel!

I've been having a lot of trouble in the digestive world lately. I started having classic gallbladder symptoms (main ones: burning, sometimes sharp pain in urq that wrapped around ribcage to back and shoulder blade, nausea, indigestion, heartburn) but had all normal tests (ultrasound, blood, endoscopy, Hida scan)   even though my results were normal, my GP, GI and surgeon thought that my best bet was to have my gallbladder removed because my symptoms pointed to my gallbladder and my ejection fraction was on the low side of normal and I reacted to the cck injection during the hida scan.

So, I had my gallbladder removed last week and here I am feeling worse!  I'm so upset!  Anything I eat causes pain...at least before the surgery I could eat a little bit with out this much discomfort. I've been trying to sip on smoothies so I don't waste completely away because I'm a few pounds away from being underweight as it is.

I had read about sod before having surgery but my drs were so sure that my gallbladder was to blame that I was really hoping they were right...now I don't know if they were.

Do you have any advice for how to approach this with my drs? I'm easily shut down by drs, they're intimidating.

I thank you in advance for your help and all the info you have provided already on this forum! I'm feeling rather anorexic and defeated at this point I have 2 toddlers and I have no energy for them and it's breaking my heart!

(Just want to add that I was diagnosed 8 yrs ago with gastroparesis but my symptoms basically vanished when I became pregnant with my first child so digestive woes seem to be my thing)

Dear Keefe

Oh dear, what rotten luck you've had. I remember those high calorie smoothies and being officially under weight. Do your best to consume calories, I ate quite a lot of ice cream!

From what you have said, it seems that your doctors have no immediate concerns about liver and pancreatic function. But just check that point with them.

You don't mention any further investigation that has been proposed. Perhaps an MRCP would be worthwhile, has it been mentioned?

In dealing with doctors whom you find intimidating, how about writing down any points you want to mention and any questions you have before you meet them? I often do this just as a memory aide. Also you could consider telling them that you feel nervous or intimidated dealing with them and would be grateful for their additional consideration.

In terms of your condition, logic suggests that you may have had SOD and no gall bladder problem; or, you may have had a gallbladder problem and SOD; or, you may have had a gallbladder problem but not SOD, but you developed SOD after your cholecystectomy. To a large extent, it doesn't matter now. Sorry if that sounds flippant. As long as you have no malfunction or structural issue which is causing observable harm, then your problem is the pain. Although I was rather horrified to be told by one surgeon that all they could do was help me manage the pain, in fact that has been what I have done, very successfully.

It is frustrating not to know for sure what is wrong with you (and technically I don't have any objective positive evidence that my SO malfunctions, only circumstantial evidence and a differential diagnosis). It is frustrating not to be able to fix the cause of whatever is going wrong in you.

But, from my experience, I would highly recommend getting on with managing the pain, even if other non-urgent investigations are pending. You will have seen above that my twin approach has been Amitriptyline and acupuncture. Read my paper (link in previous post) for full details. Speak with your GP and/or your GI about Amitriptyline or similar medicine. Take a copy of my paper or this forum with you if it will help you.

Amitriptyline works for many chronic pain sufferers and it got me back to pain free most days and normal eating.

Very best wishes for positive moves forward.

Hi Keene

I too have gone through similar only my weight gained but I do have mobility issues. I had my gb removed 3 years today and suffered the same as having gb still in. I was rushed to hospital numerous times as pancreatitis was suspected. I had chronic diarrhoea even just eating a leaf salad.

I finally got a new gi after extensive testing with no outcome. This new gi along with a gi surgeon suspected sod type 11 . Because of other health issues an operation to cut the muscle has been put on hold and I am taking nortriptolene nightly but carry a spray for under my tongue, sorry forgot the name of it due to memory loss but it's same spray for people with heart issues, up to now it's working oh and when I feel acid building up I go on a soft food diet only. If symptoms start I just call hospital and can have operation but be warned the operation can cause scar tissue and you can get back to all the issues again so please try and put off as long as you can.

It's a horrible disease to have but I'm currently just happy to be alive. Good luck. Wendy

Thank you for all the information Hazel! It's very much appreciated!

I have an appt with my GP tomorrow to discuss pain management. My gastroenterologist is on vacation for 2 weeks but I do plan on bringing up the possibility of sod with my gp tomorrow (I'll be taking the info you have provided with me).

I also made an appt with a dr I found on a website for sod that is supposed to be 'sod friendly', there's a month wait to see him so I figured there was no harm in setting up the appt even if sod isn't what's causing my pain. I figure if my local drs are not educated about sod enough to test for it, it's good to have someone that is on my Dr schedule.

My surgeon ordered a Liver panel yesterday morning, still waiting for those results. I spoke with him on the phone and he said that my current symptoms leave him to believe that having my gallbladder out was not the answer to my problems like he had originally thought. I appreciate his honesty.

I have an acupuncturist that I plan on making an appt with soon and will be taking your handout with me.

Your story has given me hope that I won't have to live in pain everyday and will be able to care for my family again. I thank God for heating pads and ice packs as they help keep things manageable.

Thank you for taking your time to help so many

Sorry you're going through this Wendy. I would really like to try to stay away from the medical procedures that I've read about regarding sod, they sound quite scary, but very hopeful that I'll pain management through other forms

I hope you can avoid the muscle cutting as well!

Thanks Keene

Even my GI warned me about surgery. Up to now I'ts been months since ive had an attack so crossing fingers and toes. Hope you are pain free soon

Take care x

hi hazel hope your well so been doing accupuncture went 9 weeks with nothing then started hurting again the last few times I've done it on night i get up in morning and have racing heart adrenaline and feel awful is this something you ever experienced I'm wondering if i have machine wrong or not getting right place for points could this happen thanks x

Hi, no I have not had this experience. Whenever I used to use needles for pain in the night I just did manual needling rather than use the electro acupuncture machine. Perhaps you could try that?

I use the electro acupuncture machine for prevention every few weeks.

I really hope this can help you xxx