My mom's situation

My mom, 57, had her gallbladder removed about a year and a half ago or so. She's been in pain ever since. My dad is an internist and has been trying to treat her but cannot and says in his over 30 years of practice he's never seen anyone with such bad, unexplained stomach pain.

Had ALL the tests known to man. Three different local GI doctors have tried to help, a super-specialist in San Francisco, and nothing is really working. All tests have shown nothing.

With regard to SOD and manometry, the super specialist in SF said that she shouldnt do that because in his experience he says over 50% of cases who go that route end up with worse pain then ever. (Reading some of the stuff in this forum, I see that ERCP/Spinchterotomy/manometry can lead to further problems.) He said she could very well end up wishing she had her old pain back.

But one of the GI doctors here locally said he was suprised that the super specialist said the 50% figure, and he feels my mom SHOULD go for the manometry. He is the first GI to say this, all others have said they don't think it's SOD.

Here is my question: Who is right? Is it 50%? Do the majority of people who have spinchterotomies after prolongued unexplained GI problems get better? I guess this is a two part question:

1. What percentate of people who do it end up worse?
2. What percentage end up saying their symptoms have been eleviated?

She cries a lot and is very, very fed up with this. Even if she can't get treated for it, she's at least like to know WHAT is going on inside her.

As part of my question above: is there a particular University in the United States (someone on this forum once praised the one in Indiana) that has the highest rate of success for the treatment of rare, unexplained GI issues, including the whole ERCP/Spinchterotomy/manometry thing? If you give me general statistic for my questions above, now about specific statistics for the best institution? Would it maybe be worth it for her to travel there?

If there is no hope for her, she basically feels as though she is slowly dying. She isn't eating enough in general, and her quality of life is so low that she has a hard time finding the will to go on. It's very painful for the family to watch. Here is my last question...
   You sir are used to telling people what their next medical option is. Well, is it possible that there is no more options for someone? I mean, is it possible that the best a doctor can do is say, "well, you'll just have to find a way to cope with the pain as well as force yourself to eat enough... or else you may very well end up dying." Is there a certain point when that's all the medical community can offer? It seems like we've already reached that point, except for this last option of manometry/spincherotomy, which my mom is so afraid is just going to make things worse. If you were her, would you do it or live with the pain? Those seem to be the only options at this poin

[Kevin Pho, MD]

The bottom line is that in difficult cases like these, there are no guaranteed solutions.  If there is dysfunction of the sphincter of oddi - treatment normally helps in 50 to 60 percent of cases.  

Being in the SF area, I would think that UCSF Medical Center is pretty adept at diagnosing these conditions.  If you want to go for another opinion, any major academic medical center would be a good start.  I cannot say off the top of my head which center is the best for sphincter of oddi manometry.  

Regarding your last issue - there certainly comes a point where there are no other diagnostic options.  In these cases, referral to a pain management center to alleviate the pain should be considered.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[surgeon]

Dr. Larry Way is a surgeon at UCSF who has a world of experience with such things. He's been around a while and may or may not still be doing surgery himself, but as a consultant with an impressive background whose advice would be worth getting, he's at the top of the list.

[SuesQ]

I had an ERCP w/manometry, which confirmed the diagnosis of SOD.  Unfortunately, I did not beat the 1 in 3 odds of getting acute pancreatitus (pancreatitis).  My overnight stay in the hospital turned into two weeks.  That was 3 months ago and I'm still recovering.  I don't know if I'll ever be 100% healthy.  Would I go through it again?  Yes.  Before the ERCP my food intake was almost nil because of the pain.  I had no future - I was slowly fading away.  At least, now, I can eat a little more and the pain can be controlled with meds.  The lifestyle change isn't always fun, but at least I'm alive.   An ERCP w/manometry does come with significant risks, but when weighed against doing nothing - I think it's worth it.  But it's not for everyone.  I wish your mother well in whatever she decides.  Good luck.

[spen]

i had surgery for SOD which i suffered since 2001 (PCS) my surgery left me with a huge scar however having suffered the pain which if is severe no-one can live with it your mum should have the procedure as if she does not she runs a real risk of bile duct infection and pancreatitis attacks as was what happened to myself, by time i had surgery my CBD had fibrosed and bile juices were very gritty, i was told that sludge/stones could still form in biliary tract even without a GB

i am not a Dr just a sufferer of chronic GI illness and found through experience that this condition gets worse if not treated

[princess7780]

How is your mom doing?  Did she decide to go for the ERCP test or not?

Thank you.

[coco53]

A related discussion, sphincter of oddi dysfunction (SOD) is it safe to operate on a 73 yr. old? was started.