I have been diagnosed with SOD. The test used to diagnose it is the ERCP with menometry. The test is very risky because it can cause and usually does pancreatitis. For me it was well worth the risk.
I had my gallbladder out in Nov of 2000. The day It was taken out I developed this horrible pain just below the sturnum. SOD can cause pain either when the stomach is empty or right after eating. Mine was always when my stomach was empty. The pain would always come on very suddenly, and everynight between 12am and 4am. I spent a year and a half sleeping sitting up , because when I layed down it would make the pain worse. This pain would cause me to sweat all over my body. There were times when the pain got so bad I would forse myself to throw up just to relieve the pain. It would bore into my back just as bad as the front hurt. I searched going Dr to Dr for someone to tell me what was causing the pain I've had 2CTs, upper GI with small bowel follow through,2 Hida scans, 2 gastric emtying scans, 4 scopes , and an ERCP all normal. One Dr thought my pain just couldn't be as bad as it sounds - 3 others said it was IBS to get me out of their office. Then one had no clue so he refered me to the Borland Groover clinic to see a biliary specialist. BINGO!! He knew when I walked in his office what was wrong. A year and a half later I felt like a weight was taken off my shoulders. I had the ERCP with menometry done found out my pressure in the duct was way high and he made a cut in my sphincter and the pain was gone. I did end up the next morning back in the hospital with pancreatitis for 3 days, but like I said it was well worth it. I am now having some pain again, but not anything like what it was. I might have to go back and have it done again - I sure will if it gets to bad. By the way SOD is usually found in people who had a non functioning gallbladder , and I too had a liver liver test. This procedure works the best with people who have more than just the pain. Pain plus the high liver has better results.
WOW! As I read your post, I was amazed just how similar it sounds to my husbands problem. He never had this pain, until he had his gallblader out. HIs was a non functioning gallblader also. It took the docs 9 months to diagnose that. We were soo thrilled when they found it out and took the gallblader out. WE thought that was the end of it all!! It was reall just the begining. It has been 4 years now and at first, he was told the same thing, IBS and didn't want to mess with it anymore.WE have gone to so many doctors and been told so many different things.I wanted to ask you, is the billiary doc the same as a gastro doc? I have never seen one listed in our book through our insurance. I would love to get him diagnosed. We have a really good gastro doc but even she is starting to run out of ideas. I plan on bringing this up to her at his next visit though. She is trying to chalk up his pain, to his fatty liver. I know and he knows, that it is not that. It all started after they took out his gallblader. I thank you so much for your post. I had my husband read it because he was starting to think he was going crazy. He gets very discouraged. Besides the pain, what can happen if you let SOD go too long?
Sorry for the long post but it sure is nice to hear about people who have similar things going on. Thanks again.........Tanya
I'm really not sure about the biliary specialist. I happen to stumble across this SOD topic when I was up at night and seaching the internet for answers. I found out about SOD a year before I was diagnosed - then asked my gastro Dr at the time if it was possible I could have it. He told me no. That he didn't really believe that it was a true problem. Another year went by before I heard about it again. SOD and Biliary Dyskinesia (which is sludge) seem to pop up together when you do any kind of search. I was diagnosed with Biliary Dyskinesia when they took my gallbladder out. You may find when you talk with his Dr that she won't have too much to say about it. It seems the Drs tend to shy away from the Biliary tract ,because of the dangers. I can only tell you what happened in my case as far as how long one can go with this. I just got sicker and sicker. My liver was fine when they took my gallbladder out - as time went on the level started to go up. Then my pancreas started to show signs. Here is my theory - My sphincter had this problem for years before I thought anything was wrong. It was too tight to open up and let the bile out, so it started to back up into the gallbladder. I had my first gallbladder attack when I was 16 (I'm 36 Now). Over the years the gallbladder stopped working. I had it taken out. Then the bile had no where to go ,so it started to back up into the liver and pancreas. This can't be healthy even though when the pain isn't there you feel perfectly normal. I was in incredible pain that was ruining the quality of my life. My kids were watching my go through all this ,because I couldn't hide it. Plus I had put on 30lbs eating my pain away. I was terribly depressed. I had my ERCP with menometry done at the Borland Groover clinic in Jacksonville Florida. They didn't take my insurance - so my Dr worked it out with the office to make it work. Look them up and read about their Drs. borland-groover.com
Thank you for your post. It got my attention because my husband has been taking lortab for his pain, I hope it isn't contributing to it instead. Good luck to you........Tanya
Just wanted to let you know of my experience with the Mayo Clinic in Jacksonville. I went to them Because my insurance company said they did the ERCP with Menometry there. When I got there - I brought all of my records with of every test I ever had done. They insisted on running them all over again to get their own results. In the end I was told I did have all the symptoms either and refused to do the ERCP with Menometry. They then told me they didn't do that test anymore. I walked out of there with a huge bill and no further along than I was before. The only diagnoses I got was IBS. Good luck to you.
Oh great! Here I thought we were on the right track. Well, I don't know if we have much of a choice, to start with. Our gastro doc said the the mayo clinic in Arizona, does that test. Well, thanks for the heads up and atleast we will know what we might go through. Thanks again