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Sphincter of Oddi Dysfunction: What helps you?

Posted by Virginia Franzen @ginnydoll, Jul 11, 2014

<p>I have Sphincter of Oddi Dysfuncfion. It causes severe upper abdominal pain, a lot like a gallbladder attack. I was misdiagnosed for ten years and have still had problems, pain that required medication and the ER every once in a while. The pain has suddenly gotten so much worse. I also struggle with Pseudo Tumor Cerebri which causes massive headaches. I am getting spinal taps every 5 weeks, they do not work on the headaches but we are trying to keep me from going blind from the Sphincter of Oddi.</p>

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collenp | @collenp | Jan 19, 2023
In reply to @kr88005 "My daughter got really sick 11 years ago while pregnant. So they removed her gallbladder while..." + (show)
@kr88005

My daughter got really sick 11 years ago while pregnant. So they removed her gallbladder while pregnant due to 3 to 5 emergency room visits a week. Now to this day she has extreme pain in abdomen back and has problems using bathroom. I ran across the sphincter of oddi here and now more than ever I think this may be her problem. She's at the emergency room as I'm typing this. She has such bad pain and is down under 100 pounds and she's 45. She throws up acid so strong it leaves burns in and on her mouth. She's had several colonoscopies and the one down her throat. Still no answers. Is there anywhere I can take her for diagnosis? We live in New Mexico and healthcare here if you go to hospital they think you are on drugs. Her doctor even prescribed her lidocaine and malox to make GI cocktail at home. I'm scared she will die before anyone can help her. 11 years of extreme pain and vomiting she tells me often she wants to die. Help please. She can't work because she never knows when she will have an attack. They last for a day to a week and that's if she can get a emergency room doctor to help her. Today I called ambulance at 5 pm. She just called to tell me they stuck her in a wheelchair and pushed her to waiting room. I just called at 11:50pm and talked to a hospital administrator and hopefully they will do something to help with her pain

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GET ON A PLANE AND GO TO MAYO CLINIC IN Rochester Minnesota.
They have a Hepatobiliary And Pancreas Clinic with the best doctors in the world.
I am thinking of going there myself.
Good Luck to you and your daughter. Saying prayers for you.

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kblove21 | @kblove21 | Feb 8, 2023
In reply to @suerc "Does any one have this and how are they being treated ? My daughter has this..." + (show)
@suerc

Does any one have this and how are they being treated ? My daughter has this and she cant eat anything. she has lost so much weight.

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Is she not eating because she can't? Or is she just so uncomfortable she don't?
They are guessing I have it? I swore it was stones or gall bladder, they say no.
It scared me, I had suddenly had a very sensitive area on my body which is now a whole area. IT IS NOT PAIN!!! For me it is a Severe Extreme Discomfort. I changed my diet immediately from fear. I eat peanuts, Rotisserie chicken, fruits and ( mostly blueberries, grapes,rasberries and pineapple vegetables such as canned mixed, fresh green beans, (baked potato) almost plain now) lots of beans kidney, black and chicken peas. No bread at all. Sometimes egg whites with spinach and tomato. Canned spinach.
That's my diet. I was 116 about 1and half months ago and I'm 102 now. I don't know what to do. I associate eating or walking ( movement) with my discomfort. If I touch it I will jump out of my pants...it's a No Don't touch it!! I'm very afraid I will die. I am left with no real answers and I'm scared. I don't know what to do? Even my clothes touching bothers me.
Again it does not hurt. Discomfort as if my organ is moving around best to descibe??describe???
Someone please ease my kind.
I don't believe in medication especially for a guess??? What di I do? Will I be okay???

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kblove21 | @kblove21 | Feb 8, 2023

Can anyone read my reply to @suere etc. above and give me any answers as well??? I'm at a loss

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beckyinok | @beckyinok | Jun 21, 2023
In reply to @jordi2002 "I am glad this works for you! But not everyone can afford that type of treatment..." + (show)
@jordi2002

I am glad this works for you! But not everyone can afford that type of treatment and some institutions in some states do not offer it at all! I will be 20 next month, I have had SOD for 6 years, since I got my last round of the Gardisil/HPV vaccines. These have ruined my life in many ways and I can no longer function. All Dr's in Oklahoma just tell me to go out of state for help since they are not willing to do the ERCP. They don't even believe I have it because I have type III. I was misdiagnosed for having IBS and none of those medications worked. I've been on many medications for the issue. All the ones on the SOD list either didn't work for me or are just now starting to wear off because my SOD is worsening. I've tried the medical/medince route and its not working, they suggest pain management when studies have shown pain medications make the symptoms worse. They of course also said it was stress and started talking about the mental aspects of it. While those can affect SOD it is not the ONLY cause and effect trigger for SOD and it won't just magically go away with mumbo jumbo pretend the pains not there meditation therapy. I've dropped 20 pounds in 2 months and can hardly eat or drink. The first time when all this started I was 90 pounds. I want to know why Drs are not educated with this issue because I hear about many girls in my age range having this all the time! Why is this not a bigger issue to Drs!? People who vomit almost weekly and cannot eat or drink, they get malnurished and dehydrated but they still brush you off because you are too of complex case. IJUST WANT/NEED HELP!!!

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I found Dr. Nusrat over 4 years ago after suffering for 16 years. He specializes and teaches other doctors about SOD. I hope this message finds you so that you may contact him for help. He is an excellent doctor that immensely changed my life. Salman Nusrat, M.D. Gastroenterology, 3366 NW Expressway Suite 300, Okc, OK 73112, (405) 702-1300.
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