SOD

[medical_questions]

1) Why have I heard that some doctors don't even think SOD is real? Or is it that maybe 5 - 10 years ago certain doctors didn't believe it, but now they're coming around and acknowledging it? Or do some still not think it's real? If some don't think it's real, why don't they think so?

2) Would you agree that new evidence is suggesting that laproscopically removing the gallbladder seems to occasionally cause this SOD thing?

We're in one of the most extremely difficult cases with my mom. My dad, an internal medicine doctor for over 30 years, says he's never seen such a difficult case. She had her gallbladder out laproscopically over a year ago, and it's been trouble ever since, getting worse. She doesn't have episodic pain, she has pain ALL the time. And it's worse after she eats. She's getting extremely skinny. So all tests are normal. She's had endoscopies, colonoscopies, ultra sounds, CAT scans, you name it. The GI doctor she just changed to recently now is suggesting she pursue the SOD treatment option in San Francisco with one of the experts in the field. We've heard about this option in the past, and from research we've done, my mom has just been too scared that the manometry and the sphinterotomy will make her worse and/or not help at all. Not just the research, but the super specialist himself in San Francisco basically warned her against it when she saw him like 6 months ago. My dad, again, the internist, has always been very skeptical about this SOD thing also, and says some of her pain doesn't fit the criteria for SOD. But now my dad is acknowleding maybe the SOD accounts for half, or more than half, or maybe most of her pain, and perhaps something else is causing the other pain. Therefore he acknowleges maybe she should pursue the SOD treatment if it could mean relieving a great deal of her pain. And her new GI doctor I mentioned before said he spoke with the super specialist in San Francisco on the phone about it, and that the super specialist himself now is acknowledging maybe she should pursue the SOD thing at this point.

So that's the direction we're going in. She has a consultation appointment with the super specialist soon, at which point she'll likely schedule the manometry/sphinterotomy. As scared as she is about it, I think she acknowledges at this point it's either take a risk it will work, or don't and die.

3) Are there short term and long term studies that show the effectiveness of the sphinterotomy for relieving pain/curing the patient (particular ones who, like my mom, have had their gallbladder removed laproscopically?)

4) How many people die each year of unknown gastrointestinal disorders? I mean, is it relatively common? I mean, if she doesn't get treated, or if the treatment doesn't work, she's just going to get skinnier and skinnier and her will to live will be fully gone (it's almost gone already), and she will die.

[charchar]

Sorry to hear about your pain. Really you could learn about this disease on the website www.pancassociation.org they are so caring and helpful. Someone on this website gave me that website and it had helped us so much .My daughter had 4 stents placed (at different times)  and they only helped for about 2 weeks and she finally had to have a total pancreatectomy with auto islet cell transplant and she is doing great now she had the surgery in feb 2005.She is completely out of pain.She too had all labs come back normal and she WAS questioned on if her pain was real. we went through 2  family dr.s and 3 GI dr.s until we finally found the dr. that wouldn't give up on her and sent her to a dr. that did her surgery and pretty much saved her life.(She is only 20 years old.) Because without the surgery we thought we were gonna lose her.She had constant pain that was crippling and they were just knocking her out with pain meds. ,but as soon as the meds wore off she was back in pain.she was hospitalized 20 times in 10 months. But really if you could go to this website it will give you great knowledge on this subject.  Hope to see you there.

[nursejenrn]

i had my gallbladder out 12/30/04.  i had five hospitalizations from 1998 to 2002 for elevated amylase and lipase levels and pacreatitis.  after the gallbladder removal, i had a bile leak as a complication to the surgery.  so, i never got better.  we waited and waited for the pain to go away as the bile absorbed, and it never did.  here it is 4/26/05 and i am still on oxycontin and dilaudid.  i have been hospitalized three times since the gallbladder removal for pain.  all of my labs and scans/xrays/egd/ercps were all normal.  i guess i am the picture of health except for the crippling pain. i was completely worked up by well respected gastroenterologists.  my brother is a cardiologist and asked his best friend, who happens to be a GI doctor, what we should do.  he told me to go to these two doctors at the university/county hospital because they were the most published on pancreatic and bile leak issues (on sphincter of oddi dysfunction).  so, i went to see them, much to the chagrin of my internist.  my internist told me that "they like to cut sphincters" at their clinic.  i am a registered nurse and have personally worked with these guys and it seemed that their patients never seemed to get better (but why would i see people that got better if i worked only in the hospital?  duh!).  anyway, i underwent an endoscopic ultrasound yesterday which showed a perfectly normal pancreas.  my MRCP was grossly normal.  so, here i am with a diagnosis of sphincter of oddi dysfunction.  i am so lucky to be working with doctors that have known me for years otherwise i don't think they would believe that my pain is real.  i hear stories of patients that no one believes and they suffer.  i am on 80 mg of oxycontin a day with dilaudid for breakthrough pain.  my career as a critical care nurse is over.  i am so scared to go through the sphincter stenting and sphincterotomy.  i just don't see that anyone gets any better from this.  maybe it's because i just haven't met them!  i only meet the ones that never get better.  anybody out there ever gotten better after the stenting?  i'm scared and depressed.  what a life altering experience at the age of 35.  i have two children; corey is 3 and ted is 18 months old.  i wonder why this has happened to all of us.  anyway, would love to hear from anyone with stories of this disease.  thanks for listening!  jennifer

[charchar]

Hi, I wanted to know if you were able to get on to the pancreatitis support group. The web site I gave you tthe second time is the right one .After becoming a member (free) Click on Pancreatitis Association International and then click on Pancreatitis online discussion board and support group and then click on messages .And you can read other people's post and also post questions of your own .There is no charge for this. Hope you find this helpful.

[ltchick]

Hi, I too, am an educated healthcare professional who was diagnosed and treated for SOD. It is a very difficult disorder to research and getting information about treatment and long term results after sphincterotomy is even harder.

I am a 46 y/o female who had a lap choly, URQ pain(1 1/2 years later), ERCP ( with long term damage by an inexperienced physician...his mentor was present during the procedure), manometry (proved SOD), pancreatitis (from the procedure), 50 lb. wt. loss, little pain relief from the sphincterotomy and now 3 years as a pain clinic patient.

I can fully understand what those of you are currently experiencing or have gone through this far. This disorder was all consuming for me. The pain ruled all aspects of my life. I had pain all the time, even at night. I made informed decisions regarding my care and I have no regrets. I may be on medication for the rest of my life, but that is better than what I went through. I have my life back. Best of health to all!

[charchar]

Hi here is the web site that I was telling you about www.pancassociation.org     Let me Know if this helps.For pancreatitis its the best site ever.

[charchar]

hmm, The Pancreatitis web site..you don't have to be a paid member, you have to make up a username and password but you don't have to pay.I will make sure I gave you the right one.I never paid anything ever to them. You were saying that your mom has pain every minute of the day ..So did my daughter thats why she practically lived on pain meds. And she was hospitalized so many times.the only thing that helped her pain was the surgery .She had other surgeries to try to help like I mentioned before but the pancreatectomy was the answer for her.She got it June 21 and the pain lasted until February 18 and thats the day they did her surgery.Yes most of the time chronic Pancreatitis does come and go but hers didn't, she stayed in pain constantly. And when the doctor took it out he said it was diseased.

[medical_questions]

The website about pancreatitis is useless unless you become a paid member, which I'm not about to do right this moment.

Reading about chronic pancreatitis and asking my internist father about it, I thought it was something that came and went? My mom's trouble is CONSTANT. That means EVERY MINUTE OF EVERY DAY. I've read nothing about chronic pancreatitis that says it can be like that.

[charchar]

That was my thoughts also. I still don't understand that, but I do know when we got to the right one he knew exactly what to do and he fixed her.I only knew him for a week and she was scheduled for surgery the next.We went through 4 gastros. and 2 Drs.( all within 8 months) before we found one that knew what to do.He pretty much gave her back her life.

[medical_questions]

Just seems utterly ridiculous that multiple gastroenterologists and internists have not thought of that.

[charchar]

Yes , she very well may have.There is a pancreatitis site that you can talk to other people that has it or has had it.Some of the people have been dealing with it for years.We couldn't of made it without them .They helped us tremendously .Someone gave it to me from here.It is http:\\health.groups.yahoo.com\group\pancreatitis                                                    
                                          deedee hubbard

[medical_questions]

Interesting. My mom could have pancreatitis for the past year and a half?

[charchar]

Hi , I have a daughter that just turned 20 years old in Nov. 04 well in may 2004 she started getting very nauseated and starting having some upper abdominal pain. She started throwing up every meal after about a week of that we took her to the ER. and they put her in the hospital she was in the hospital on iv fluids for a week and no change she was still throwing up everything they did a test on her gallbladder and said her injection fraction was 18% so they took it out. Still no change she continued to throw up anything she ate. They also took out her appendix .Well they decided to go ahead and send her home still vomiting and said to watch her.Exactly 1 week after they removed her gallbladder and only 3 days of being home from the hospital she had a severe attack in the upper abdomin and we imediately took her back to the ER. and they said she had pancreatitis(she never drank in her life or has taken anything more than an asprin) she was in for 1 more week there and then transfered to a university for another week.Basically the treatment for pancreatitis is starvation and Loads of pain meds.! She lost so much weight. One day after she was discharged from the hospital she was back at the first hospital with the same thing ! She was in for 3 more weeks . Well it continued this way for a long time(she was hospitalized 21 times between June 04 to Until Mar. 05) we took her to a Dr. in Minnesota and he removed the pancreas and transplanted her islets cells back into her liver .It is now 1 month after surgery and she finally has her life back .We thought we were going to lose her to this HORRIBLE disease.She is pain free now .The reason I am telling you all this is pancreatitis is hard to diagnose they also said she had sod. And we had stents put in .And it was better for a short time. And then we were back to where we started from. They said she had an eating disorder just because they couldn't find out why she couldn't hold any thing down ...sometimes she wouldn't eat because when she did she would have so much pain. She lived on narcotics.what were your amylase and lipase levels ?? Did they check them? Make them keep looking for a reason for your pain and don't give up.. keep fighting.Most of her problems started when they took out her gallbladder.But they said they really don't know why she got this disease.

[medical_questions]

Beth G,


Are you still out there? I can't believe it, I lost your email. Please let me know if you're still out there. ***@****

[medical_questions]

Beth,

Thank you so, so much for your answer. I have to say, this is the best, most heart-felt, most compassionate, AND most HELPFUL answer I've ever gotten from anyone on this subject, doctor or non doctor. Thank you. I'll be giving it to my mom to read for moral support.


Thanks,

Adam

[beth g.]

hello again,
please read my reply posted below about my sphincterotomy.  i now see that this post is also yours and I would like to expand a little further about myself as i see your family is really struggling with this.
First I would like to let you know i am a masters prepared registered nurse practitioner who works for a cardiology practice in new york, so I am a very well informed health care consumer.  The physicians i work for, although cardiologists were encouraging me to seek a second opinion and pursue any viable treatment option. They were obviously concerned when I lost thirty pounds in two months!!!
I did quite a bit of medical literature review on my own while seeking treatment, and the truth is, there just isn't that much.  If you or your dad has access the best lit rewiew was done in Gastrointestinal Endoscopy Volume 59 Number 6 may 2004
In regards to type III SOD there is really not alot of great data, but success rates range from 55 to 80%.  The weight of expert opinion seems to support intervention. The minor risk of pancreatitis was acceptable to me.  I could not continue living the way I was.  I also felt like I was dying.  A pancreatic stent protected me and was placed during the procedure.
I have a few more thoughts on this as well.  I disagree with the surgeon that this is an overdiagnosed problem.  perhaps I am now somewhat jaded but unfortunately I see this as a condition that usually afects middle aged WOMEN, as they are the ones who get their gall bladders out the most frequently in the first place. I think this contributes to the medical opionion its "not real" or the patient also must have an underlying psychiatric disorder.(this is in the literature, I'm not making this up)I have talked to far to many women who's problems were far from over once the gall bladder came out. If it happened to men it would have been better studied long ago.  Just my opinion and I'm in health care.
Good luck.

[surgeon]

SOD is probably real, and overdiagnosed. Further, it's hard to rely on manometry when it involves traversing and therefore directly affecting the very sphincter whose function is being assessed. Drugs given during the procedure can affect it too. So the test used to diagnose SOD is not highly reliable, nor reproducible. The diagnosis, despite technology, remains one, to a large extent, of exclusion. On the other hand, there's evidence that there is a group of patients with pain referable to the biliary tree that get relief by sphincterotomy, and it really is a pretty low-risk procedure with little chance of adverse effects. So in the case of your mother, without knowing enough detail on which to base a judgment, if there's no other obvious explanation for her problems, and the experts think SOD is possible, there's not much reason not to have it done.

[medical_questions]

When you say "not highly reliable" are we talking 20% reliable? 50%? 75%?

When you say "there's no reason not to pursue it" what about the possibility of developing acute pancreatitus, feeling worse, and getting no relief?

Basically, if Im reading what you write correctly, you're painting a pretty bleak picture. I mean, do you know anyone or know OF anyone who had manometry, it showed SOD, then had a sphinterotomy, then felt BETTER? Even if they had to have a couple or several sphinterotomes. Are there cases where eventually the patient felt all better??? Does that EVER happen with SOD?????

(Still waiting Dr. Pho's answer to regarding my specific questions 1 - 4).

Thanks, Surgeon,

Adam

[Kevin Pho, MD]

To answer your questions:
1) Sphincter of Oddi dysfunction is a real disease.  It can be difficult to define in the literature, since it goes by many names (i.e. biliary spasm, post-cholecystectomy syndrome etc.)

2) It has been suggested in small studies that SOD occurs with greater frequency in those without a gallbladder.

3) Studies regarding surgery suggests an improvement in symptoms at a rate about 50 to 60 percent.  There are some medical treatment options that you may want to consider, including calcium channel blockers, nitrates, or even endoscopic botulinum toxin injection.

4) I cannot quote any numbers from people dying from "unknown" GI disorders.  It is certainly possible that undiagnosed (i.e. idiopathic) disease can lead to morbidity and mortality - but this will be less and less common as diagnostic tools become more advanced.

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