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spincter of oddi dysfunction

i am a 20 yr old woman i have been suffering severe pain in my upper abdomin area since i was 5 then was diagonsed with spincter off addi when i was 18. I had my gall bladder removed at 19 to fix my problem then hadnt worked i had my spincter cutt 3 months ago the surgeons told me it would fix my problem.it hasnt, i expierence massive spams and aching in the middle, let and right side of my abdomin, ive had hida scans and all they have no answers for why i have this pain as everything is normal. i now have up to 150 micrograms of infentanyl now with no affect i have been turned away from the hospital saying they can do no more for me as i have had all the pain relief i can have, my body is becoming ammuned to these drugs.i expierence these on a near weekly basis this is taking over my life and no one can help me.The diatrian has put me on herbal pills witch are the only thing that has come near to helping now as its working with my body .Please help me i feel i have come to the end of this and been told by surgeons there is no more they can do for me and feel these people have given up trying to help were i feel people are not taking this seriously, half the docters say they've never come across this condition before, What more can i do?
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Avatar universal
I totally understand, I was given the same diagnois coupled with pancres divisum. I was treated by a wonderful dr. at indiana university medical center, his name is dr. Glen Lehman. The treatments were not easy, 23 ercps, and 2 major surgeries, the last being a total removal of my pancreas. I was on fentanyl 100mcgs, 2 lorcet plus every 4 hours if i could keep them down and phenergan 50mg iv every 4 hous. All this barely controlled the pain and vomiting. You are definately in my prayers!!!!
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Avatar universal
Oh honey - I am so sorry for all that you are going through.  SOD is not a nice condition at all and you are right on when you say that doctors (some) dont know of it.  You need to get yourself to a GOOD doctor who specializes in SOD.  There are a few centers aroudn the US (assuming you are in the US?) that i would highly recommend.  Where are you located?
Indiana University, University of Minnesota, Medical Center at Univ of South Carolina would be the top three I recommend that I know have docs that acutally specialize in SOD.  They might be able to help more by a) being experiened in ERCP if that is something you are open to and b) being familiar with medicines that might be able to help like muscle relaxers, etc and not just pain meds.


I'm so sorry you are going through this at such a young age, and have been suffering for so long.
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