“DIAGNOSIS SUGGESTION. After 12 years of attacks of RUQ pain, I think I have finally found a diagnosis! I want to share it, in hopes that it helps someone else. If you have pain and you recently had your gallbladder removed, or if you had a Hida Scan (gallbladder fuctionality test) and the test caused the same RUQ pain, or if you have undiagnosed RUQ pain at all, you should at least look at the Sphincter of Oddi (SOD) dysfunction. The SOD is the muscle that controls the release of bile from your bile ducts and pancreas. The dysfunction causes severe colicky RUQ or sternum pain like a kidney stone, it can cause increased liver and pancreatic values (but often does not, mine has not in 12 years, or like with gallbladder issues, the elevated values may not show up until days or even weeks after the attach), vomiting, nausea, etc. My pain generally is focused directly under the right ribs, but sometimes radiates to the center of my sternum and my back. I had my first attack in 1999. Since then, I’ve been given over 40 diagnoses, and undergone multiple procedures and nearly a dozen surgeries!
I saw a Mystery Diagnosis show on SOD dysfunction over a year ago and thought, “”No, that can’t be what I have because I’m not as sick as the patient on the show.”” Well, I wasn’t then, but after 12 years, the attacks got really bad after I had my gallbladder removed, and I finally developed some other symptoms of SOD dysfunction – certain foods, especially greasy, high fat foods can trigger an attack (literally, a bite of greasy food can cause a pain like an ice pick through your ribs, but the next bite of something not greasy is fine); vomiting (finally, though I’ve nausea and diarrhea for years, I had to puke before it became a real symptom), and low grade fever. After being admitted to the hospital for dehydration and malnutrition because the latest attack left me unable to eat or drink for several days, I still had to insist that the doctors keep me in the hospital when I was rehydrated to try to find the cause of the problem or otherwise, I’d have ended up right back there again since I still couldn’t eat. Luckily, I caught my gastroenterologist on rounds at the hospital before he was real awake that morning. (He’s the best in town, but his favorite answer to a suggested diagnosis is “”Oh, you don’t want to go down that road – if that’s what it is…the treatments are terrible or it just means it could be a number of things or well, that might be it, but let’s not test for it, let’s just try more drugs). However, I just hit him with the question first thing – I said “”I looked at the symptoms for SOD dysfunction and it sounds a lot like this…what do you think?”” He replied “”Oh, you have classic SOD dysfunction symptoms….”” Then he caught himself and added that the treatments are dangerous – they can cause pancreatitis, but doesn’t say you can get it if you don’t treat it! He then goes on to recommend that I see a neurologist for chronic pain treatment (i.e., drugs), when I’m having an attack that could be causing damage to my pancreas and liver! He also neglects to mention that SOD dysfunction can be tested for by having a pain management doctor or neurologist inject lidocaine into the muscle to numb it. If it works, they can also do injections regularly to keep the muscle relaxed, or if that fails, there are procedures for cutting the muscle but some of these techniques are still being studied for long-term effects. There are several studies going on right now at various medical schools around the country, so SOD dysfuction seems to be a relatively new diagnosis. That said, anyone who’s pain got worse after gallbladder surgery should definitely check into this disorder, and if you have RUQ pain, at least look it up on the Internet.
I’m hoping to get the injection into the SOD muscle this week and will provide an update on whether this works. Thanks to everyone for their posts – it really made me feel better knowing I wasn’t the only one with this pain, but I feel awful that so many are suffering through this too! Please let all of us here know what your final diagnosis is, when you get one, so others can know what else to ask their doctors. I am so tired of doctors telling us not to look up our symptoms on the Internet also. We should be knowledgeable about our treatments, conditions, alternative diagnoses! If I had accepted any of the diagnoses prior to this one, who knows how sick I’d be by now? With this condition, I’ve been diagnosed with everything from interstitial cystitis, IBS, endometriosis and scar tissue to “”something Western medicine cannot cure.””
Also, would everyone please tell their worst diagnosis ever? And your worst experience with a doctor (don’t name names)? I think it would help me (and hopefully others) to know if doctors are as condescending and awful as they are with me! If I ask a question, I’m “”doubting”” them or questioning their judgment (anyone does that to you, find another doctor). I’m also working on putting together some information for a letter to send to the doctors and hospitals that didn’t diagnose me properly and would love to know if everyone’s comments would be the same as mine. I plan on copying the appropriate medical boards on these letters to see if they’ll at least address the issue of patients like us by insisting that doctors take more continuing education courses or something!
You are all in my prayers! May each of us find a diagnosis and live a pain-free life again! In the meantime, may we all do our part to make getting a diagnosis easier for the next person, who could be our father, mother, child, sister, brother…. ”