I don't know if you ever got a reply on this but yes - I've had every test there is and everything came back normal - yet the pain is so intense at times I just sit and cry. I finally asked my breast surgeon about it today because she is also a gastric oncologist and she told me about this. Eureka!!!! Finally I may be relief. It has been 5 years since my gallbladder was removed and I have been in intense pain ever since!
Hi. I am a 47 year-old female and had a dual sphincterotomies approximately 5 years ago. By dual I mean that the physician cut both my sphincter muscle and enlarged my pancreatic duct. I was diagnosed with SOD III via a test called Manometry where your pressures are measured. Supposedly this test is the gold standard in an accurate SOD diagnosis. The dual sphincterotomies helped me tremendously pain-wise and I did not have any post complications. Prior to the surgery I was living on Fentanyl patches and Fentora for breakthrough pain, and not eating much. Unfortunately, now that it's 5 years later, I am looking at having to have the procedure again due to scar tissue from the first sphincterotomies. I have absolutely no hesitation in having it done again and am hoping and praying for results like the first time. The pain simply does not allow for any kind of quality of life so to me personally it is worth any risk. I saw Dr. Martin Freeman in Minneapolis Minnesota. I live in Kingport, TN and had to travel. He is one of the best in ERCPs and sphincterotomies thus the travel.
Me again! I have posted on this post before and promised I would update. I have had my ERCP and it turns out my sphincter was very tight. It isn't sphincter of oddi dysfunction in me, the doc called it papillary stenosis. I read the current correct term is sphincter of oddi stenosis. There was no inflammation or scarring so the docs think I have had it since birth. I have been sick with this for 20 years, I am 32 right currently. My symptoms improved some but my quality of life is still terrible. I am looking into a surgeon in NY to do a Choledochoduodenostomy, where they put a new hole in the duodenum for the common bile duct. Fun, fun!!!
Peggy
I was wondering if you were happy with your results with Dr. Morgan. I am about to make an appt in NY to speak to a surgeon about a major surgery, not the sphincteroplasty, but a different one for sphincter of oddi stenosis. I live in GA, and if I could go to SC that would be much closer. I speak to another woman online who had a surgery done by the doc in NY, for sphincter of oddi stenosis, which is why I am aiming to go to him. But, if you have feedback on Dr. Morgan, that would help a lot. TIA
I cannot think of words that would say how happy and satisfied I am with her. Her PA Stephanie is equally as amazing and I feel as safe in her care as I do with Dr. Morgan. It is 106 miles from my house to hers. I cannot tell you how degraded humiliated and disregarded here in Savanah by every doctor that I encountered. I was labeled a pain med seeker and I am the first to say YOU ARE DAMN RIGHT!!!!! I most certainly was, I have never been in more pain in all my life. They are the most knowledgable an d caring group of people I have ever encountered. I have to have a feeding tube surgically put in on January 24th so she is operating on me again because the scape approach failed because of my gastric bypass,, my escluded stomach has somehow moved itself behind my liver and it was impossible. I was left untreated for malnutrition for so long I still don't feel the sensation of hunger or thirst at all plus it is still quite uncomfortable for me. I am so pleased that you are thinking of going there and I know that you will be pleased as well. I wish you well. If I might ask what is wrong with you? Please let Dr Morgan I suggested her for you I would really appreciate that. I am considering writing a book on this whole thing as I promised God that if I made it through this and I lived I would do whatever I could to make sure the word got out that there is a problem and it really isn't in your head. Regards, Peggy
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Jennifer my dear DO NOT GO TO ANY doctor in Savannah for sphincter of oddi. When I finally learned that I had it I did some checking. Now just a little history for 2 years I was a referral specialist for three doctors and the Savannah College of Art and Design Clinic. I first saw Dr. Stephen Carpenter in Memorial (who I worked for, Memorial I mean) he was so arogant this was in February he said he wouldn't touch me because I had gastric bypass I had to see Dr Oliver Whipple but he would run a scope on me. Dr. Whipple had since came to me in the room I was inpatient at the time with a horrible attack and he explained to me that surgery he would do for me the next day, My liver enzymes were a mess and all kinds of symptoms. I went into the scope Dr. Carpenter said "ooo big surgery, Dr Whipple I don't know, I am not really going to be able to see anything here" he put me to sleep and I NEVER SAW HIM AGAIN!!! Very important point as this story continues. I for some reason was not NPO that night so I made myself NPO. The next morning Dr. Whipples people came in did you eat or drink anything I said no and they said good he is going to fit you in later this morning. 4 hours later Dr Whipple came in stood in the doorway never entered the room said it was cancelled and to follow upp with him and Carpenter in 2 weeks. Still, I had never again see Dr Carpenter. I saw Dr Whipple again in follow up who said again what surg he would do, I wasn't able to get into Dr. Carpenter until a couple months later but I because really ill so he scheduled another test for me. He walked into the room said 'I am not really going to see me again," after I paid my $500 copay he had given my husband a paper showing all the parts of my insides he could not see and said she needs her gallbladder out and that was it, once again I never saw him again. The first week of may I ate out and got incredibly ill. I couldn't keep anytbhing in at all. I called Dr Whipples office and scheduled the gallbladder removal. It was June 1 2011. about 4 days before I started swelling from the knees down. I worked for my primary care Dr and she said it was nutritional since I had been so sick. On the day of surgery I showed the anesthesiologist and he ordered STAT blood work and they were all battling do we wait go on but I had been given Versed already so when I woke up I was in super shock. I had a 13 inch long incision along with the laproscopic incisions. My gallbladder was 4x's its normal size, he had to pull all intestines out to unwind them from around a HUGE hernia and I had stones in my appendix. I still question with all the tests I had ran didn't any of those things show up????? Anyway I heal freakishly well from surgery. After a big back surgery I was up the same night using the bathroom on my own. I kept on swelling bigger and bigger. I kept asking everyone Is this ok. I mean HUGE not just a little big. I was a size small at top and a 2x on the bottom. Well I finally passed gas and was sent home. Two days later I was having trouble breathing and my body from the waste down was ENORMOUS. I called Whipples office on a friday and he said, "have her call her primary care!" I was furious. He did call back and order an ultrasound, now he was on the 1st floor of this building and I went to the 5th for the test. When the tech saw me she gasped and put her had to her mouth they had to use dopler to find the pulse in my legs due to the swelling. She called his cell and said she doesn't have a clot but You really have to see this. He at 4pm on Friday said send her to her primary care. this lady bugged me to go to the ER. Well in the ER I was found to be in congestive heart failure, I had protein malnutrition and a condition called anasarca where your body robs from the red blood cells and stores it in any fat you have. I was in the hosp 11 days on TPN to try and get my levels back to normal. I have never recovered. At my 8 week visit with him and I was still in so much pain and not thriving nutritionally he threw his hand in my face said, "I don't know surgically your fine, see a gastroenterologist," all while walking away from me. I said Dr. Borak and I was still wanting Dr. Carpenters head on a platter at that point. As is usual with SOD most of the test being ran were showing normal. Reason being it is more a structural problem. I did have bizarre up and down liver enzymes a positive CA19-9 test but I was merely to all of them a pain med seeker. I went to the hospital on Mothers day incredibly ill. My albumin was onlhy a 1.2. I had been begging both my Primary Care and the GI for TPN and was repeatedly refused. I had a hospitalist figure it out. I have to mention that my Primary cares nurse yelled at me for 10 minutes on the phone because my home health care nurses I eventually had to have called there to discuss pain med options, this nurse told me it sounded like "cramps." The home health nurse was furious and wanted to file a formal complaint against her about how she was treated. Charleston SC at MUSC in 2009 did one of the leading studies on SOD and especially for people with gastric bypass because non of the typical treatments are possible on gastric bypass people because of how we are rewired inside. I had to be on TPN 24/7 for 2 months to be strong enough to survive the surgery. I did well but am still quite bothered by pancreatitis and I do not experience the sensation or hunger or thirst. We do not know the reason for that but she is sending me to a Dr Hooper there that she says is brilliant and can help. I am having a feeding tube put in surgically on the 24th. The leading man to put gtubes in with a scope on gastric bypass people usually takes 25 mins to put it in but on me after 2 hours he stopped trying, my excluding stomach as somehow made itself behind my liver so Dr Morgan will have to open me up and put it in that way. About Savannah, I called Dr. Oliver Wipples office posing as a new patient to the area with the condition sphincter of oddi and I was passed to three people the last being his head nurse and SHE made ME spell it for her and said that she had never heard of it and didnt know if they treated it or not. Be careful with the pain word here in Savannah, doctors take offense to it here for some reason. Feel free to contact me with any questions I will do anything I can to help. my emails is
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Regards
Hi Hy! Sphincter Oddi Dysfunction is definitely not something fun to deal with. My history is somewhat similar to the post by PeggyJo. My gall bladder was full of stones but the start of the entire story was more so due to a stone slipping into my common bile duct blocking it off and causing me to be VERY ill and having to be hospitalized until stone was removed (ERCP number 1). Shortly after this, a week or so, my gall bladder was removed. Little did I know, this would began a VERY LONG drawn out ordeal. Like you, the pain did not go away completely. To make a long story short, I have been hospitalized inpatient stay three times since, 5 total ERCP's done, multiple endoscopes, diet changes, multitude of medications tried, etc. during the next few years after gall bladder surgery. I too researched as much as possible on what the probable cause was and came up with the SOD. I was fortunate at the time to have a doctor at a teaching hospital in NC that specialized in SOD and gall bladder disorders. He performed the last ERCP that I had and diagnosed the SOD at that time. He prescribed me HYOSCYAMINE 0.375 mg twice daily. This has been my "miracle" drug as I tend to call it. Ever since I began this medication (non-narcotic and non-addictive), I have been symptom free and no further hospitalizations. This medication helps control the pressure/spasms that come along with SOD at the common bile duct area. In return, the pain subsides and I pretty much can eat anything I want. I have been on this medication for about 4 years now and have not had to increase it to this point. I have found though that by trying to limit my fat/greasy foods/and proteins, the symptoms do stay better controlled as well. Hope this helps you out.
Thank you so much for sharing your experience. Unfortunately even with the sphincterplasty my ordeal does not seem to be over and I am not sure what that is all about. I have to have a feeding tube put in next Thursday because I still don't experience the sensation or hunger or thirst and the nausea and often time pain that eating causes is .... well just not worth it. I am on 24/7 TPN thru a PICC right now but I do eat some things through mouth occassionally. The other day though for some reason, I blame some evil force that invaded my pantry LOL I saw the Captain Crunch with crunch berries and I ate a bowl of it. Honey I begged God for death. I honestly did. I would have gone to the ER if I could have handled the trip but I laid on my bathroom floor and just got sick from every conceivable place. I couldn't keep pain meds down and usually I use a phenergan suppository when I get that sick but of course I had a scorching case of diarrhea. Yeah I had a good time. The only thing I can do when I get this sick is just not eat for a about 3 days and it finally slows down and I can continue to try again. A super day for me eating wise is 500 calories. From someone who used to weigh 305 lbs it is weird to have people beg you to eat. sounds easy doesn't it? Well little did I know that it would be one of the worst phrases I could ever hear. I would rather kick my rear end kicked than eat sometimes. I will keep you up on the feeding tube thingy. This is a new one for me. All I can picture is that movie Coma where they are like wrapped like mummies with this plug in their gut to get nutrition I assume. Right now though my assumptions can be quite vivd, wish I wasn't such a creative person sometimes. Regards to you and Live, Love and Laugh. Until we chat again!
hi, i know this is an old post but i have suffered now for over 7years i have tried all kinds of pain relievers and palladone (a synthetic morphine) works amazingly
Hi, I am wondering how you are now? I am about to have an ERCP and would like to hear your thoughts a few years after all of this was going on for you. Thank you so much! M
hi, i've had pretty much every type of scan, test, tablets going for this, was on morphine patches for 3years but finally last year had an ercp which they injected botox and that did reduce the pain and the infrequency but didn't last very long at all about 2 months and i wasn't totally pain free but this confirmed my diagnosis of sod as everything else always came back negative so they arranged for another ercp including a cut and a stent put in to try and stop the spasms but i found out i was pregnant :) so im having to wait till after the baby arrives, so atm all i can do is when the pain gets so bad i have to go to e&a and have gas and air which is great for getting me through the pain till it calms and then i can go home im also waiting to have this at home :). before i was pregnant this would happen but they would also give me buscopan iv injection which really helped to settle to pain quickly which is strange as taking buscopan tablets never did a thing. Its took me 6 years and many doctors plus 3 jobs lost and extreme pain to get to where i am now (not sorted) but finally i have a consultant who actually believes in sod and believes there is something wrong with me, which is actually really nice after years of being told it was just acid or constipation or even all in my head. So for me my plan is get through my pregnancy and try having the sphincter cut and a stent and hope thats the end but if not there are still some options like if it comes back after it being cut having it removed which they can do but for me the most important thing is being able to control the pain so if you can get that under control it will make a huge difference to your life and help you deal with solving it altogether :) i hope this helps even if it just points you in the right direction for pain relief
yes I do....I am having my surgery on tuesday.....
My nightmare began about a year ago. I had my gallbladder out because it was not functioning properly. About a week after the surgery, all off my symptoms came back. Unpredictable nausea and left sided abdominal spasms that would go into my back. I had ERCP with monometry done by the man who basically perfected the procedure. He placed stents that stayed in for 2 days (most painful thing in my life so far) then removed them. The point of this was he cute the sphincter open to widen it and the stents kept them widened and opened and my body adapted. Stents come out after 2 days. I found out my duct was completely blocked. Being a nurse I wanted to see the scans of my ducts and sure enough they were all clogged. I feel better for the most part and still have some bad days with spasms. The most frustrating thing is how many meds I have to take. I'm 30 years old NAND have never even broken a bone in my life, and now I'm on 5 different medications, all that have to be timed perfectly with meals or they won't work. I halos have to follow a very restricted diet, only 5g fat per meal. I can't even eat a subway sanwich. Anyone else taking lots of meds or on such a restrictive diet?