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Avatar universal

sphincter of oddi dysfunction

PLEASE, CAN SOMEONE HELP ME FIND A GASTROENTEROLIGIST THAT CAN HELP ME MANAGE THE PAIN OF SPHINCTER OF ODDI DYSFUNCTION.  There are no specialists in this area who can do manometry of my liver.  In 2002, Dr. Bailey at Duke Univ. made three attempts in a period of nine months to access the bile duct and measure the pressure inside my liver.  He was unable to do the manometry and I developed a severe case of pancreatitis.  The second attempt he was still unable to do the necessary measurements, but he put a stent in my pancreatic duct (not sure why). I Have had chronic bouts of pancreatitis and have been pretty much in constant pain which escalates to what I call "mind-bending" pain 3 to 4 times a day.  I DRAW UP INTO A FETAL POSITION AND CRY AND ROCK BACK AND FORTH, I CAN NO LONGER LIVE WITH THIS SUFFERING, I DESPERATELY NEED HELP NOW!!!!!!!!!!!!!!!!!!!  In November 2006, I had a Gastric bypass, only after spending two hours explaining about the "liver pain" and being reassured it would have no bearing on that problem.  I was fine for about a week and then I couldn't keep anything down, not vitamins, not liquids, nothing.  No matter what I tried to ingest I would get severe pain in my stomach and would immediately throw up.  I lost 100 lbs but couldn't stop losing.  The pain in my stomach combined with the liver pain was treated with Fentanyl !00mcg patches and lortab 10 for breakthrough pain.  The medicine did not touch the liver pain.  Than in July of 2007 I was hospitalized with MRSA Sepsis and Osteocytoclastic vasculitis.  I had many complications.  Pulmonary embolism, "sm. holes".  I was admitted to the hospital every month thru April of 2008. I had 2 more episodes of MRSA, pneumonia 2 times, endocarditis once and home health the entire nine months.  I received antibiotics thru a PICC line because of my inability to keep anything down.  The vasculitis was quite severe and the fact that MRSA requires antibiotics and the vasculitis required steroids (which suppresses the immune system) only complicated and delayed my recovery.  Approximately eight months ago the pain in my liver was so severe and the pain medicine wasn't helping, I took six xanax hoping it would make me sleep through the pain.  My daughter was so distraught I went to the ER and was admitted for a few days in hopes that the hospital could find an experienced physcian with extensive knowledge of Spincter of Oddi dysfunction.  They were unable to locate someone in this area.  I know it is dangerous to "self-medicate" and I have not done so since.  I went through basic tng in the army, we were the first coed basic tng.  I loved the military, I have traveled and use to be so proud of my accomplishments.  I returned to nursing school and eventually graduated.  I continue to renew my RN license every year even though I have not worked since 2001.  I was an oncology/hospice nurse, I miss that more than anything.  Nothing, absolutely nothing in my entire life has caused the kind of pain I am in with my liver area.  I have osteoporosis, osteopenia, fibromyalgia and lupus (some doctors say "yes" to lupus, some so "no", most say yes. And as for the fibromyalgia, there is no test to confirm one way or the other.  I wonder if it is possible that all of these symptoms are related to one diagnosis.  

Currently, the pain in my liver area is disabling me.  I can't get out of bed for weeks at a time.  I keep a heating pad on that area constantly.  I have a wonderful husband, however the intimacy is practically non-existent this makes me very sad.  I feel like such a burden, he reassures me I'm not.  He took me to the ER last week, the pain was impossible to bear.  I was given morphine which didn't help much so he gave me dilaudid, this did help for awhile.  He stressed I needed to find a doctor familiar with sphincter of oddi dysfunction and get into a pain clinic and don't stop going (as I have done in the past).  Yes, I desperately need something for pain control but not forever!  I have had no biopsy of the liver or the duct, no manometry and possible other studies.  I really need someones' help.  I don't feel that all the tests have been exhausted.  It was never explained to me how severe the pain would be or any kind of prognosis for this problem.  When the pain is so intenses as it has been in past weeks, it is impossible to wrap my mind around it, I truly feel like someone has there hand clutched around my liver and is twisting it.  I don't know how much longer I can handle this. PLEASE, IF THERE IS A PHYSCIAN WILLING TO HELP ME TRULY GET TO THE BOTTOM OF THIS, I WOULD BE INDEBTED TO FOREVER.  I want to be well, that is all I want.  With all the pain combined together from my other health problems, that is a fraction of how intense the pain in my liver area is.

Any reply is appreciated maybe there is someone who has had the same problem and can just tell me I am not alone with this problem.
5 Responses
Avatar universal
You may not be able to find someone in your area. There are only a few physicians who are very experienced with this problem across the country and I'm not sure that those people are found in your area. Go to the SOD group at yahoo and read through the posts. Several good physicians are recommended at that site.

There are unfortunately few meds that can really help the pain associated with SOD. Narcotic-based meds are NOT recommended due to the fact they raise the pressure in the common bile duct and can actually raise the pain. You may have to try some heavy dose anti-spasm meds, nitroglycerin or some specific calcium channel blockers.

But I believe you're going to be looking at some travel if you're going to find physicians experienced in this condition.
Avatar universal
I feel for you!!  I too have SOD and pancreatic divisum.  It took several doctors to realize that I needed a manometer reading and ERCP to find out what was going on.  I was told to go out of town since there are few facilities that do this type of testing.  By the grace of God and 5 gastroenterologists later, I went to Cedars Sinai Medical Center in Los Angeles, CA.  I found my angel, Dr. Simon Lo.  He is a specialist in this field, dealing mostly with pancreatic disease.  I too had a biliary and pancreatic stents put in to open my pancreatic ducts which were completely closed.  I too am a retired RN.  I have lived with severe pain for six years.  But Dr. Lo has helped me.  Taking pancreatic enzymes with each meal to digest my foods, and changing my diet to a no fat, no red meat, no spicy foods diet has improved my life.  I take Hyrocodone/APAP 7.5mg Q6hr PRN for pain. This is the only narcotic that does not increase my pain.  When I have acute pancreatitis, Demerol with Zofren for nausea work better than the other narcotics. It does not take all the pain away, but it helps me to have a better quality of life and to be able to eat more.  I have 100% faith in Dr. Lo.  He saved my life when everybody else told me to enjoy what life I had left.  I live in El Paso, TX.  I fly to see him to get restented when my ducts close.  He has prolonged my life and given me hope.  I hope that he can also help you.  His address is:
                              Dr. Simon K. Lo, MD, FACP
                              Cedars-Sinai Medical Center
                              8730 Alden Dr., Suite 2E
                              Los Angeles, CA 90048
                              Office:  (310) 423-6082
                              FAX:    (310)  423-1826
                              Toll Free    888-344-3378
                              E-mail    ***@****

I hope this information helps you.  God bless you!


701334 tn?1262857103
wow,i dont know what to say,,i can tell you realy,realy feel very bad and my heart goes out to you.
have they tried anything for the pancreatitis you get such as a cell transplant or even given you enzymes to take with meals to help in digestion and let the pancreas settle down?
as far as what ive been told calgal is right,meds dont realy help,and can actualy make things worse with the oddi.
is there any kind of nerve block they can do?,,,id be curious to know about that one.
Avatar universal
I am so sorry for what you are going through.  I too live in an area where I am unable to find good medical help.  I travel out of state.  I have a friend who also has the same disorder as you.  She is going to the Mayo Clinic and is very happy with the care she is receiving.

Avatar universal
I know exactly what you are dealing with. I've had SOD for about 6 months.  The reason your doctor put a stent in your pancreatic duct was to keep it open whenever the sphincter spasms so that the pancreatic enzymes won't back up and cause pancreatitis. However, stents can sometimes fail for various reasons, and they can sometimes make pancreatitis worse. Even just having a procedure that has anything to do with the bile and pancreatic ducts can cause pancreatitis. I know this sounds ironic because narcotics are supposed to relieve pain, but they have been shown to make SOD symptoms worse, so maybe you should ask your about trying an antispasmotic instead. Antispasmodics are usually used to treat IBS, but they are also used to treat SOD because they work by decreasing the intensity of muscle spasms. But, I wouldn't recommend taking Levsin unless nothing else works for you because, for me, the side effects were greater than the benefit. However, I have had some success with Bentyl. It blurs my vision periodically and makes me constipated, but the pain seems to be less severe, so long as I take it every 6 hours on the dot. That being said, I still get breakthrough pain intermittently, but I would take some relief with a few side effects over no  relief. I know that this is probably pretty far away from you, but I would recommend seeing a gastroenterologist at the Virginia Mason Hospital in Seattle. They are some of the best gastroenterologists in the US and are currently doing a research study on new SOD treatments. I am going there in two days to talk to Dr. Gluck about treatment options for SOD because I have exhausted every therapy the GI specialists in my area know.
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