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sphincter of Oddi dysfunction
Hello question for all...been sick since oct. 2005. Trying to be an airline pilot, 2 weeks before my flight instructor checkride...I get royally sick.
I've had constant sometimes severe nausea and upper left/center/right abdominal pain (mostly on the left) and also radiating in the upper left back. Usually in the mornings it's like a 2/10 pain wise but it goes all the way to 7/10 on the pain chart as the day goes on. Also lower left..below belly button pain but I think that's from my chronic constipation (which I didn't have before when I was healthy). I was running super healthy before this happened.
I've had 2 endoscope's/colonoscopies/small bowel barium xray...Ct scans..even IVP of my kidneys trying to find the pain. There was slight gastritis found on the last endoscope. Also my face feels flush like i'm swimming in toxic soup at times..but my blood pressure is normal. My stool studies keep coming back with white blood cells but colonscopies/endo's have shown no results on biopsies.
In 2007 on a hunch I begged for an ultrasound/HIDA scan and found zero stones but my gallbladder only working 16%, and was reccomended to be removed. Before surgery I couldn't even lie on my right side because it was so swollen. Finally after it was removed the surgeon told my parents that it was good it came out when it did. Looked swollen and infected.
Years later i've gone through the whole IBS theory, antidepressants..now can't work at all due to nausea so I begged the doctor to test me with an ERCP thinking maybe this is bile duct related. He refused because my pancrease and liver enzymes were normal and felt the risk was too high but he let me do a MRCP last week. Which came back normal.
My question is: Since they've done a MRCP, I know that doesn't rule out SOD at all.. just rules out strictures and obstructions but now that they have imaging on MRCP, is there any point in doing a full ERCP with injection since they can see the imaging *or have*
Isn't it better and less risky to just test for a sphincter of Oddi manometry instead? Less risk for pancreatitis? (which I might be suffering this whole time from I can't tell..). My pain on the right side is there now..and recently these last few months is getting worse. I have a bad hunch I have SOD and i'm trying to find a doctor in salt lake city who will do the procedure since my GI (semi-new doctor) won't do it. Thanks!
I've had constant sometimes severe nausea and upper left/center/right abdominal pain (mostly on the left) and also radiating in the upper left back. Usually in the mornings it's like a 2/10 pain wise but it goes all the way to 7/10 on the pain chart as the day goes on. Also lower left..below belly button pain but I think that's from my chronic constipation (which I didn't have before when I was healthy). I was running super healthy before this happened.
I've had 2 endoscope's/colonoscopies/small bowel barium xray...Ct scans..even IVP of my kidneys trying to find the pain. There was slight gastritis found on the last endoscope. Also my face feels flush like i'm swimming in toxic soup at times..but my blood pressure is normal. My stool studies keep coming back with white blood cells but colonscopies/endo's have shown no results on biopsies.
In 2007 on a hunch I begged for an ultrasound/HIDA scan and found zero stones but my gallbladder only working 16%, and was reccomended to be removed. Before surgery I couldn't even lie on my right side because it was so swollen. Finally after it was removed the surgeon told my parents that it was good it came out when it did. Looked swollen and infected.
Years later i've gone through the whole IBS theory, antidepressants..now can't work at all due to nausea so I begged the doctor to test me with an ERCP thinking maybe this is bile duct related. He refused because my pancrease and liver enzymes were normal and felt the risk was too high but he let me do a MRCP last week. Which came back normal.
My question is: Since they've done a MRCP, I know that doesn't rule out SOD at all.. just rules out strictures and obstructions but now that they have imaging on MRCP, is there any point in doing a full ERCP with injection since they can see the imaging *or have*
Isn't it better and less risky to just test for a sphincter of Oddi manometry instead? Less risk for pancreatitis? (which I might be suffering this whole time from I can't tell..). My pain on the right side is there now..and recently these last few months is getting worse. I have a bad hunch I have SOD and i'm trying to find a doctor in salt lake city who will do the procedure since my GI (semi-new doctor) won't do it. Thanks!
made an appointment for consultation with the specialist on the 30th
*figured i'll keep everyone updated. Hopefully i'll get a success story on here.
*figured i'll keep everyone updated. Hopefully i'll get a success story on here.
forgot: sillyvixen WOW holy crud...hopefully that doesn't happen to me..my gosh..that sort of thing is the stuff that scares me. I'm to the point where - do whatever it takes to heal..I may go bankcrupt but I have zero life now but wow hopefully that doesn't happen. This guy i'm going to is apparently really experienced so..*crosses fingers*
(but yeah posts like that scare me to death..)
*but thank you for the good luck..best of luck to you too!
(but yeah posts like that scare me to death..)
*but thank you for the good luck..best of luck to you too!
thanks all for the replies!
Just to update my situation I begged my GI who was hesitant to do the ERCP and he fowarded me with the name of Dr. Saundhu here in utah who has done a bunch of these (actually he's an expert in it). I'll call and make an appointment first thing monday morning. Hopefully the wait won't be too long.
Thanks for the information CalGal, I've read it's a dangerous procedure and everyone scares me to death about it but I mean, there's not much else to do but I will for sure ask about having the pressure test done for SURE with it. That's the whole point, MRCP was negative but my right side aches..and spasm's occasionally but it just feels tight 24/7 even in my upper right back..when I get stressed it really drives the nausea up the wall. I have been having a hard time sleeping but I have had *some* success on a drug called librax (an anti-spasmotic) so that helps me conk out and if I lay on my right side I can actually feel it relaxing/draining. We'll see what this guy says but i'm all for it (doing the procedure).
The sad thing folks is i'm really at the end of the road being sick 3 1/2 years without health insurance, I've applied for goverment help and since i'm single and not married living with parents I've been denied like 5 times. I'm going to start working on disability I guess because I barely have enough now just to pay for office visits now..no clue how i'll pay for this ERCP with manometry. But i'm very certian this is somewhat related or is my problem (SOD)
I'd take drugs for life but as a pilot I can't take really any pills, if I have to rely on them I can't fly..fact I don't even know if i'll ever fly again :'*( hopefully if it is what I think it is..they'll cut it or surgery and I'll work my way out of medical debt that I piled up. I don't know about you people...but my experience our health care system is really messed up, especially for a poor college kid like me. It needs serious attention..I'm going to work on pushing for health care reform when i'm better!
KeyD; good luck on your decision.. I need to work and right now the pain and nausea is to the point where I can't do squat, I used to be a high school teacher but I don't even dare try and teach now.... I'm to the point where i'll take the risks (and I did find that John hopkins article..flip i'm ready for surgery if that's what it takes..i'll do anything to fly again). Thank you.
Just to update my situation I begged my GI who was hesitant to do the ERCP and he fowarded me with the name of Dr. Saundhu here in utah who has done a bunch of these (actually he's an expert in it). I'll call and make an appointment first thing monday morning. Hopefully the wait won't be too long.
Thanks for the information CalGal, I've read it's a dangerous procedure and everyone scares me to death about it but I mean, there's not much else to do but I will for sure ask about having the pressure test done for SURE with it. That's the whole point, MRCP was negative but my right side aches..and spasm's occasionally but it just feels tight 24/7 even in my upper right back..when I get stressed it really drives the nausea up the wall. I have been having a hard time sleeping but I have had *some* success on a drug called librax (an anti-spasmotic) so that helps me conk out and if I lay on my right side I can actually feel it relaxing/draining. We'll see what this guy says but i'm all for it (doing the procedure).
The sad thing folks is i'm really at the end of the road being sick 3 1/2 years without health insurance, I've applied for goverment help and since i'm single and not married living with parents I've been denied like 5 times. I'm going to start working on disability I guess because I barely have enough now just to pay for office visits now..no clue how i'll pay for this ERCP with manometry. But i'm very certian this is somewhat related or is my problem (SOD)
I'd take drugs for life but as a pilot I can't take really any pills, if I have to rely on them I can't fly..fact I don't even know if i'll ever fly again :'*( hopefully if it is what I think it is..they'll cut it or surgery and I'll work my way out of medical debt that I piled up. I don't know about you people...but my experience our health care system is really messed up, especially for a poor college kid like me. It needs serious attention..I'm going to work on pushing for health care reform when i'm better!
KeyD; good luck on your decision.. I need to work and right now the pain and nausea is to the point where I can't do squat, I used to be a high school teacher but I don't even dare try and teach now.... I'm to the point where i'll take the risks (and I did find that John hopkins article..flip i'm ready for surgery if that's what it takes..i'll do anything to fly again). Thank you.
I too have been questioning if I have SOD. the johns hopkins university has done extensive research on the dysfunction--there are actually three different types of the dysfunction, not all can be indentified via ercp/mrcp, type 3 is symptomatic based. I too went to my local gi doc and was told that it can't be SOD "because i haven't had pancreatitis again"( i had it prior to my GB being removed.) there is a risky procedure that can be done via ercp to stretch the area where the sphincter is located. there is also a medication called callen the may help. I have chosen not to proceed with additional testing and doctors at present but am confident that SOD is my issue. i can't remember the web site for johns hopkins but google search it. good luck.
sorry i should say i hope you find piece of mind and a cure for your problems soon - all the best!
ERCP is not a picnic - i had to endure this barbaric proceedure 3 times!! the sedation did not work and i was traumatised each time!! if i had had a MRCP i would have emergency open choly there and then .... unfortunatly the NHS has to look at the cheapest options ... due to my age i was eventually shedualed for day surgery lap choly at a local cottage unit - i was a candiday for for day surgery due to my age - i was an open conversion due to infection and adheasions!! my gallbladder was gangrenous and stuck down to my liver and duedunm (sp) i had a hour slot and was in surgery for 6 hours! i nearly did not make it - i had pancreatitus and peritonitus i had to have my apendix removed as well as my gallbladder scraped off ajoining organs - i would not have made it to my origional date 2 weeks later if i had not accepted a cancelation due to holiday comitments of the patient ahead of me on the list. my consaultant actually said that if i had had an mrcp i would have had an open choly as an emergency - rather than wait 6 months for day surgery!!
Sorry.........that should read the manometry step ISN'T done without the ERCP.......... to check for SOD it's done as a single test when SOD is suspected.
Matthew, the ERCP test should be done with manometry, and technically the manometry step isn't done with the ERCP - so the two are actually one test. Yes, you're right that the MRCP does rule out abnormalites, but it does not rule out spasms or elevated ductal pressures which only the ERCP with manometry can do. So if you're experiencing spasms, unfortunately the only way you're going to find out is by doing ERCP/manometry.
In the meantime, have you tried high doses of anti-spasm meds? Or something like nitroglycerin or specific calcium channel blockers? I know they're horrible due to the side-effects, but if those meds work it could give you an indication as to whether or not the condition is due to spasms. You'd have to be working with a doc that really understand SOD, but it might be worth looking at.
Yes, the ERCP does run the risk of pancreatitis, but that's why many docs have added the stenting step - to try to tamp down the odds. Other docs also suggest botox injections, which might help.
Do NOT work with just any doc who will do an ERCP. Please find one that REALLY understands SOD. In the long run, you can't afford not to.
And make sure that if the pressures aren't high in the ducts that a sphincterotomy is NOT done. The long-term problems resulting from an inappropriate sphincterotomy can be miserable.
In the meantime, have you tried high doses of anti-spasm meds? Or something like nitroglycerin or specific calcium channel blockers? I know they're horrible due to the side-effects, but if those meds work it could give you an indication as to whether or not the condition is due to spasms. You'd have to be working with a doc that really understand SOD, but it might be worth looking at.
Yes, the ERCP does run the risk of pancreatitis, but that's why many docs have added the stenting step - to try to tamp down the odds. Other docs also suggest botox injections, which might help.
Do NOT work with just any doc who will do an ERCP. Please find one that REALLY understands SOD. In the long run, you can't afford not to.
And make sure that if the pressures aren't high in the ducts that a sphincterotomy is NOT done. The long-term problems resulting from an inappropriate sphincterotomy can be miserable.
also been tested for allergies/celiac/went to rhumatolgist to rule out vasculitis
h.plori to all kinds of blood tests..thyroid..the whole bit..
even had a urolgist test my kidneys if they are tilted..i've pretty much been tested for it all unless i'm missing something... wish I had done the ERCP instead of the MRCP (MRI)
h.plori to all kinds of blood tests..thyroid..the whole bit..
even had a urolgist test my kidneys if they are tilted..i've pretty much been tested for it all unless i'm missing something... wish I had done the ERCP instead of the MRCP (MRI)
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