Statistics on recovery rate after treatment for SOD dysfunction?

[mymomissick]

My mom is 57. She has had pain in her stomach increasing over the past couple years. Almsot a year ago she had her gallbladder removed. The pain has progressed more and more since. From what I've read about SOD on the internet I have a feeling it is SOD, but my dad, who is an internist, doesn't think so, nor does the "super specialist" in San Francisco think so. They think it's a motility problem. (The local GI specialist has given up.) All medication attempts have failed. All tests come back normal, CS, colonoscopy, MRCP, endoscopy. She has not had SOD manometry or ERCP from fear of complications, and because, like I said, the super specialist doesn't think that is what is going on. Despite that in the research I've seen it says only about 20% of patients who undergo the ERCP and sphincterotomy get pancreatitis, the super specialist in SF said in his experience he would say the number is more like 50%. He says if my mom got pancreatitis she would be in the more horrible pain imaginable and that she would "wish she had her old pain back." So hearing that doesn't exactly make he anxious to do it.
     The past few months have been a roller coaster. About two months ago my dad took her to the hospital at night because she was so naseated and sick. Her symptoms are constant RUQ pain and frequent (1-5 times a week) naseau. So she was hospitalized for days and that's when they did the most recent colonscopy. She's scared and depressed and not sure of how she can go on living like this.
     My question for you is, do you know how many people get better in the long term with these difficult cases? To narrow my question a little, how many people who get treated for SOD through spinchterotomy recover? That is to say including the ones who get pancreatitis after the operation as well as the ones who do not, what is the overal recovery rate? If it's good, then she can possibly look at the pancreatitis as a necesary path to get to a full recovery. Do you know what I mean?
     As far as where my dad is with this, (who is naturally her ongoing primary care physician) he is talking to a local surgeon who also knows about what is going on so far. The surgeon's only thought is to remove part of the colon. The surgeon says it is no garuntee, but it is all she can think of. Do you know of any cases where someone gets their colon removed because of these sorts of symtoms? If so, how often do they fuly recover?
     Your thoughts are highly appreciated.

     Adam

[mymomissick]

Doctors aren't Gods, you can't expect them to be able to solve all medical issues. Just because it's 2004 doesn't mean medical science has "figured it all out" yet. In 50 years we may look back at this time with wonder at how LITTLE we actually knew, in the same way we can now look back at the 50's and think the same thought. But you may be right that more studies should be done. The removal of the gallbladder too often seems to cause more/additional symptoms. And you may be right that more doctors should try to stick with their patients longer. But the idea that "people should not have to live with this kind of pain" well, who is going to disagree with that? But the fact is if the doctors are doing their best and thinking of everything they can think of given the most up to date medical science and there is still no positive results, you can't blame medical science, you can only blame the time you live. The same pain in the year 2050 might be easily diagnosed and treated. Being in this forum and reading people's posts about their unsolved medical problems is quite sad after awhile. There's so many people living with pain, like my mom. I used to think my dad, an internal medicine doctor, could fix anything. Now that I see him looking perplexed at this, I know there is much medical science doesn't know (yet?). The best thing you can do is go to the best, most highly recommended specialists in the country, or perhaps the world. Beyond that, all you can do is except life for what it is. Easy for me to say, I don't live with pain. At least those of us here who are having pain aren't also living on the street with no family or support, and believe me, there are some people in that category.

[Jen16]

Something I wanted to mention...when my husband saw his family doctor recently she said that she has had many patients having similar complains of upper abdominal pain following laproscopic gallbladder removal and was wondering if some studies need to be done to see if it is really the best way of gallbladder removal.  I know they prefer it as it is less expensive and faster recovery but if you factor in that a lot of people seem to be having complications well then it ends up being more expensive in the long run if these problems may not have occurred with the more invasive method of gallbladder removal.  

Also I think that people should continue to seek second, third or forth opinions if they can't find someone who is going to do something to first find the problem and then fix it.  This seems to be something that a lot of doctors seem to throw up their hands and say they don't know what is causing the pain.  People should not have to live with this kind of pain.

[mymomissick]

thanks for asking. she say's she's feeling "fair" these days. For her that means no nasea, but still abdominal pain. When she's naseated, that's what she considers her really bad days, for obvious reasons. I don't think that's happened in a couple weeks. But I think my folks realize they won't be able to go on like this forever. In the future she'll need further medical opinions, evaluations, and probablty procedures. How have you been feeling?

A

[tuff case]

Have not heard from you lately.  How is your mom? TC

[Jen16]

Well that is good to know that you can have pancreatitis without having eleveated enzymes because my husband's have been fine lately but the dr is sending him for all kinds of bloowork.  She is really good about listening to me and talking to me as a health professional (I am a RN) and not like I am an idiot who doesn't know what they are talking about.  So along with the bloodwork she also prescribed him an antidepressant and demerol.  Lately the pain has been a little better but still getting worse after meals.  He took a demerol last night before bed and he had a good sleep and then this morning it was better than it had been but started getting a bit worse when he got up.  She gave us the name of a GI specialist so we have to follow up with the surgeon that has been following my husband and if he has no further ideas what to do then I want to get a referral to this other dr.  I'm hoping maybe this is the end though, maybe his sphincterotomy is starting to heal and the pain will slowly decrease.  Still if it returns as what happened with you then maybe we'll still have to see this other dr.  Have you had your thyroid checked?  The dr is having that checked as being cold can be a symptom of hypothyroidism.  Could also be from less body fat particularly if you've lost a lot of weight with all of this.  Anyway thanks for all your help, talk to you again soon.

[krisg]

Hi,
Glad to hear that the doctor appt. went well.  I had my thyroid checked a couple of years ago.  All was fine.  I also have been diagnosed with celiac disease (in march) too.  I belong to a pancreatitis group on yahoo and have gotten lots of helpful information and support through them.  If your husband is interested feel free to e-mail me direct for the link.  ***@****. Just make sure you put ERCP in the subject line or I might delete it.  The group also has a great database of doctors around the USA who treat lots of patients with SOD and pancreatitis, etc.  Take care
Kris