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I had my gall bladder removed in 2002 and had no problems until November 2008. I started to experience severe pain in my right upper quadrant and debilitating nausea. After several Dr.'s and every test in the world I was finally diagnosed with Spinchter of Oddi. I live in New Mexico and there is not a Dr. here who treats this condition so I was referred to a specialist in Denver. In August 2009 he did a biliary spinchterotomy and a stent was inserted in the bile duct. At that time my duct pressures were high and the duct was almost closed. I felt better immediately and it lasted for almost a year when the symptoms started all over. I saw the Denver specialist again in Aug. 2010. At that time he did another spinchterotomy by extending the bile duct, no stent. I felt better until Jan. 2011 when it all started again. In May I went back to the specialist and he did another biliary spinchterotomy and told me that this time the pressure was within normal limits and the duct was not closed. Due to this factor the gastric surgeon who was also involved decided I was not a candidate for the more agressive transduodenal sphincteroplasty. Approximately 3 weeks after the last stent was inserted I had to have it removed due to complications (continued/worse symptoms). At that time they advised me that they thought the best options for my continued treatment would be pain management and acupuncture. I contacted a pain specialist I had used several years ago for back problems and I saw him in July. We discussed options and the only procedure he thought was a possibility was a Celia Plexus block, very risky and normally only done on terminally ill patients. At this point I was desperate so he agreed to do the procedure. I had no problems with the procedure and about 75% relief. Unfortunately it only lasted about 2 weeks. The pain management Dr. does not want to do this procedure again due to the risks and the lack of long term relief. He suggested I try going back to the Denver people or perhaps the Mayo or Cleveland clinic.
I spent 20 minutes on the phone yesterday with the Denver people who told me there was nothing else they could do and I needed to go back to the pain specialist. Bottom line, live with it! I'm sorry but I'm not ready for my life to be over and I'm certainly not willing to spend the rest of my life taking large daily doses of pain and nausea medications not to mention the once a week trip to the Emergency Room because I can't manage the pain and nausea. I called the Mayo clinic and they told me they did not have a physician who treats this condition and they really didn't know of anyone to refer me to. The Cleveland clinic is still an option but a very expensive one and I hesitate to make the trip out of fear of being told once again that I just need to learn to live with it! What I live with daily is constant pain and debilitating nausea.
I am extremely lucky to work for sympathetic, understanding people because I am doing good to make it to work 3 days a week. Lately not even that much. But the fact still remains that I can't get any answers other than take the drugs and live with it.
I know that many of you out there are living with similar problems and I would welcome any advice or suggestions you may have. None of us should have to "live" life this way. Thanks for listening. Lisa
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