sod dysfunction

[Julfer]

In October 2002 I had my gallbadder removed which left me with a bile leak and nearly killed me. Since then I have had many visits to the doctors and was sent home with a new pill and told that I was alright
After a few horrible attacks after the bile leak was i guess you can say fixed, they found a blocked valve in the sphinter of oddi.  A different GI opened it up, which took the attacks away. Since than I have still dealt with this horrible swishing or like that butterflies in your stomach filling, but it is where that valve is. I am told I have SOD Dysfunction.  I have had many ERCP,S which resulted in pancreatitis almost every time.  I went to Scott and White Hospital in Texas and was told that probably no doctor would be able to help me because the mortality rate would be 75-80%.  He said the only doctor that could propably help is Dr. Lehman. I need to try to see him if I can because the pain is debilitating and I also have the pain in my back that feels like someone hit me so hard and also like I am being squeezed to death. Has anyone had the same experience?


This discussion is related to Statistics on recovery rate after treatment for SOD dysfunction?.

[CalGal]

I haven't dealt with this debilitating condition, but you're not the only one going though it. I don't know the statistics on postcholecystectomy SOD, but the numbers are unfortunately very high.

When you had the ERCPs did the docs also do manometry? Unfortunately that is the only way to get a true diagnosis of SOD since there appear to be 3 types, each with slightly differing characteristics. That manometic reading of the pressures in the duct is very necessary to figure out what is going on.

I'm not familiar with Dr. Lehman, but there are some very good, top-notch docs around the nation who deal with this horrible condition. In many cases 'typical GI docs' don't have the expertise to handle it.They do ERCPs in the hope it will help and sphincterotomies (cutting the sphincter - muscular opening) in some cases when it shouldn't be done, which can be deleterious in the long run. In addition, in most cases, they now appear to be suggesting that those who undergo ERCPs also be stented to lessen the chance of developing pancreatitis. It's doesn't always work, but at least it's better than nothing.

I hope you're going to contact whomever it takes to try to get some relief.

[ohiogirl]

Hey Julfer - I am so sorry that you have had such a rough time with SOD.  I have it also, but was one of the lucky few who got into good hands quickly.  I have not had and ERCP (yet) and I have been living with SOD for two years now, luckily with not too much pain once I started meds.  Have you docs prescribed Elavil and Levbid for you?  One is an antidepressant that has an effect on pain, and Levbid is an antispasmodic which can help with the SO contracting.

I am a member of an online support group for SOD and Pancreatitis that has helped me more than I can ever explain.  If you are interested, I'd love for you to join, just visit our home page which is:  http://health.groups.yahoo.com/group/sphincterofoddi-pancreatitis1/ and we'll get you signed up.  The help htat I have received from people like you and me has to do with meds that help, good docs across teh country, and just other's experiences which help to hear.

I would highly recommend you see Dr. Lehman if you can, he's at Indiana University.  I see Dr. Sherman there, and he's also as good.  There is also Dr. Freeman and he's at University of Minnesota.  Otherwise, I woudln't trust anybody.   ERCP should only be performed by docs who have experience performing thousands of them, and I woudl only go to a speciality university hospital like IU or UM, if you can get in the hands of any of these docs, you'll be in the best care possible.

I'm curious to know if the docs that performed your ERCP did it with manometry?  Is that how you were dx'ed?  Also, I have never ever, ever, EVER heard of a mortality rate that high after and ERCP - that's insane!  I think it's something like 2%, at least that's what I heard from my doc.

There is always a risk of pancreatitis after ERCP, but the risk is lowest with the best docs.  

I am so sorry that you ahv SOD.  It can definitely be a long road.  :o(  I am very passionate about it though, as I have it, so I hate to hear of a fellow sufferer, especially one that might need to get in better doc care.  I don't mean to scare you, it's just that SOD is sooooooo unknown, even in the GI community, which is pretty scary.

Please feel free to visit our home page.  There is currently a message out there and a memorial to one of our dear friends on the home page.  Or, feel free to write me a private note on this and I'll see how else I can help you.

Good luck - please keep us posted.

[rhinestonecowgirl]

I sorry to hear about your problem.  I had my gallbladder out 2yrs ago.  I started having pain posterior L radiating around to R anterior with the pain is a squeezing sensation.  You are the first person who has described the same pain and squeezing.  I am not familiar  with SOD .  I have tried Elavil and Levbid without any success.  I hope you are  successful in getting help.  Now I may be able to get help or at least rule the disorder out. Good luck.

[ohiogirl]

Hey there,
I also had my GB out almost two years ago now, and immediately after, and I do mean immediately, I started having bad URQ, more frequent, more predictable, squeezing unbearable pain.  The only way I remember describing it was as if someone had my organs in a vice inside of me just squeezing to death.  And, it hurt mostly through my back.
I would always get my pain on an empty stomach which I have heard of others being the same as well, but most of the time people react to foods rather than an empty stomach.   I'd get my pains in the middle of the night, all night, once counting 10 "attacks" in an hour - it was horrible.  I'd have to eat to stop the pain.

I am sorry that the meds haven't worked for you.  They really are hit or miss, but they are worth trying at least.  Docs prescribe Elavil and Levbid if they suspect SOD - and by the description that you gave, it sounds liek you may ahve it too.  How are you getting along now?

I suggest that you try to get to a major Pancreas Center if you can.  The ones that I know are good are Indiana University, University of Minnesota, and Medical University of South Carolina where I have heard of people seeing Dr. Peter Cotton. (I forgot about him a little earlier when I posted back to Julfer.)

Good luck - please feel free to contact me if you have any questions, or visit our SOD support group online at:  http://health.groups.yahoo.com/group/sphincterofoddi-pancreatitis1/

[saxon72]

I have suffered from SOD as well.  I was referred to a local hospital for an ERCP,  and that is where all my troubles began.  I can't express to you loudly enough that you need to get to DR. LEHMAN in Indianapolis.  Unfortunately, I wasn't referred to him until it was too late... by the time I saw him all the damaged had been done, I was left with Chronic Pancreatitis.  So listen to your doctors, get an appt. you won't be sorry.  He is the best.
Good luck, feel better.

[BB72]

Your story is almost word for word the same as mine. 3 years ago gallbladder surgery & left with SOD.  After 3 hospitalizations with severe pancreatitis that nearly killed me, I was sent from Tampa to Charleston SC to a tertiary care center to see "world renound Dr. Peter Cotton".  He did the sphincter release, manometry, and stent, and sent me back to Tampa.  Within 2 weeks I was back in the hospital with - you guessed it, pancreatitis.  After 2 more attacks and hospitalizations, I was sent back up to Dr. Cotton in Charleston.  He put me in the hospital again and put 4 more stents in - after 3 days I was sent back to Tampa.  Within 3 weeks, I was back in the ER with pancreatitis.  I was hospitalized 3 more times with pancreatitis until I could not take all the pain anymore.  By this time, we had tried demoral, morphine, and dilaudid for controlling the pain.  My liver enzyme tests were still off the charts, and I was on so much dilaudid that the nurses couldn't believe I was still functioning and not knocked out from it.  For nearly 18 months after the original gallbladder surgery, I was hospitalized 12 times for pancreatitis.  Finally, I was given the name of the Chief of the Gastroenerology and Pancreatic Diseases unit at Tampa General Hospital - Dr. Rosemurgy.  I was released from one hospital in Tampa on Friday afternoon with an appointment to see Dr. Rosemurgy on Monday morning.  He took one look at me and immediately put me in Tampa General Hospital.  By now, I had lost 30 pounds and was so exhausted, I could not even sit up on his examination table.  Dr. Rosemurgy was my hero.  He explained to me what he thought was happening and why all the stents did not work.  He needed to open me up to repair all the damage and reconstruct my entire biliary tract.  The surgery was extensive (7hours), and I came out of it with several tubes and part of my duodenum removed.  I was cut from side to side, and the recovery was not easy.  The good news is that I have had only 1 hospitalization since then, and it was due to an ERCP performed to make sure none of the ducts were blocked again.  I now have regained some of the 45 pounds I lost, and am doing much better.  I no longer take dilaudid unless I absolutely need to, as I still have some pain occasionally.  I take 4 pancrease enzyme pills before I eat anything, which is to help the pancreas digest food.  Dr. Rosemugy gave me my life back and I would recommend him to anyone that has problems like mine.  I wish you luck in your quest to get relief and answers to your problem.