Seeking Sphincter of Oddi Relief through Sphincteroplasty?

[ChronicPanc123]

Hi,

Please let me know if you have had transduodenal sphincteroplasty, know someone who did, or know much about this surgery. I was recently diagnosed 8 weeks ago with sphincter of oddi dysfunction through an ERCP with manometry. The doctor cut the pancreatic and biliary sphincters for the first time. I felt better for a few weeks, but am now feeling exactly the way I did pre-procedure. There is a reputable surgeon who recommended I go for the transduodenal sphincteroplasty surgery. I am seriously considering it as I don't want to be one of those people having to get multiple ERCPs with sphincterotomies. I had my gallbladder out 13 years ago and had SOD pain that entire time but learned to live with it. I was misdiagnosed with IBS. After having a baby last year, my whole digestive system shut down--vomiting, no appetite, nausea, abdominal pain. It got so bad I had to get a feeding tube to my small intestine to bypass the pancreas biliary area. I went from 140 pounds to 95 pounds. I am heading that way again and am pretty desperate! Please help by sharing any info with me.

[CalGal]

I'm not sure if specific names can be posted.................? Go to the Iahp.com website. Find the search practitioners tab and enter Saratoga Springs NY. In specialties, highlight visceral manipulation and hit go. Look for the PT with a larger number of 'circles' colored in - it indicates the classes taken. If that doesn't work drop me a note/message via the board.

[ChronicPanc123]

Who is the PT who does the visceral manipulation near me?

[CalGal]

I'm so sorry to hear all that's happening. GI issues are so damned devastating - to say the least. I have one slightly screwy suggestion you might want to consider.

In the medical setting I'm in, we encounter a variety of thoracic, abdominal and pelvic issues and use a number of modalities to try to help. They range from strict 'Western medicine' to blended techniques including osteopathic and visceral manipulation techniques. In some cases, the use of visceral manipulation can be a big help if adhesions or other 'restrictions' are holding the tissues and organs hostage. Organs and tissues need to be able to freely move and slide past and over surrounding tissues. Otherwise dysfunction ensues.

I noted you're in Albany. I couldn't find anyone in your specific area, but in checking the IAHP website and querying Saratoga Springs, I found one PT who has been trained through at least 4 levels of the visceral manipulation modality. I don't know how much that individual uses those techniques, nor do I know if their 'hands' are any good - which is a must since those hands have to 'listen' - but it might be worth a call and perhaps a chat. You might also want to consider querying other towns around you for others who have more training in both visceral and neural techniques. And you want to find someone who uses them a lot.

[CalGal]

There is another way, the gene test. It can be done via Entoerolab using a cheek swab. They provide a brief explanation on which genes you have on the sheet they'll forward to you, and have a fuller explanation on the FAQs on the website.

[ChronicPanc123]

Hi CalGal,

Thank you for your interest and don't think you are butting in. I wish more people would get involved with helping those of us suffering on these forums. I have been gluten, dairy, and soy free for some time now. I do have the celiac gene but always tested negative for celiac on blood and endoscopy tests. Regardless, I don't want to chance it and opt to live gluten free. I am hoping the colonoscopy I will have on March 13 will reveal why I feel so lousy. Thanks!

[ChronicPanc123]

I am so sorry you continue to suffer like this. I know exactly how you feel--wishing for an abnormal test result. I do know a woman in Australia who got relief from SOD pain by having stents put in. She ended up having a sphincteroplasty and it didn't help, so she is going to go back to getting stents. It's like her bile duct itself is spasming, not just the sphincters. I get the shooting up into my right shoulder pain as well. I suggest getting an upper GI with contrast to at least see if food and drink are backwashing up into bile duct. I don't have stones either.

[tylercrew]

Along with the extensive blood work, I have had biopsies of my upper and lower intestines. Ive had ERCP's, swallowed the imaging capsule, upper GI series, etc. Is there another way to test? I have tried to associate/eliminate it with certain types of foods and have not noticed any triggers. And you are not being "pushy." I welcome any suggestions :)

[CalGal]

How were you tested? I don't mean to 'push' the issue, but I've seen misdiagnoses with blood tests so damn many times when it actually was part of the problem. I know it's not definitive when you're dealing with the pain you have, but if it could bring down the level a couple of notches it might be of a small bit of help.

If you didn't have the gene test for gluten genes, you haven't covered all the bases yet. Some studies suggest it can take up to 10 years for a biopsy or possibly the blood tests to actually pop positive for celiac disease. And there's a new player on the block - gluten-sensitivity. It can and does have some rather serious symptoms all of it's own (although docs are still debating.............give it 13 years or so, and they'll finally start to understand).

[tylercrew]

Gluten is a great suggestion and I have heard it many times. I have been tested for that as well. I was actually hoping for something definitive. From extensive blood work to new imaging studies, this is such a tricky medical condition. Days where you feel defeated and days where you are determined to find an answer! :)

[tylercrew]

Hi. I read the link you suggested. I thought I was quite informed of this but I need to reread to understand. I never had any stones. Just had upper right quadrant pain for several months with all tests looking normal. Into the 6th month, a repeat test showed my gallbladder function had dropped tremendously. They thought that was the answer. It was removed. The pain continued. I saw a specialist. Diagnosed me with SOD type 2. Sphincterotomy was performed. No help. Couple months later, Botox injections into sphincter of oddi were injected. No help. Couple months later the Transduodenal Sphincteroplasty surgery was suggested as my only option. That was January of 2013. As of today, nothing has changed. You name the test, I have had it. Blood work has been normal. Every imaging you can think of has been done. Most of the more detailed imaging studies were done mid last year. The only recent studies were an xray or CT scan which were normal. I have also had trigger point injections directly done under my rib cage. My first symptom I ever had began in late 2011 and was a night of increasing pain under my right rib, similar to a stitch one gets when running, but amplified and unrelenting as though it was a gallbladder "attack." ER doctor immediately thought gallbladder but all tests showed nothing. Pain subsided. April of 2012, I began to have pressure and building pain. After a few months of tests, that's when they discovered my gallbladder disfunctioning. Then all of the above mentioned followed to where Im at today. I still have daily pain in my right upper abdomen ranging under my ribs to just below. I have never experienced acid reflux. Its almost as though I have gallbladder attacks daily with no gallbladder. I have nausea and occasionally vomit. The pain can come on suddenly. I can have pain with or without a meal. It does seem to worsen throughout the day. I usually have diarrhea (which can come on suddenly) or if I do break down and take pain medicine, it can make me constipated and sometimes can aggravate the symptoms. I will say the when I do have a bowel movement (sorry to have discuss that) I actually feel worse inside. If I have several movements in one day, the pain is more intense and feels like a heavy, stabbing, gnawing pain that sometimes bores into my right shoulder blade. I have lost weight. I am 5'11" and began this at approximately 155 lbs. I am down to 120 lbs which is quite obvious on my tall stature. (20 of those pounds lost occurred with in a 2 month time frame.) I still love food and eat as often as I can but I cannot guarantee in will stay in me for long. For almost 2 years now, it is a daily pain, some days worse than others and some days just tolerable. Thank you for taking the time :)

[CalGal]

I don't mean to butt-in, ChronicPanc, but I'm wondering if in addition to what's going on that you know about, have you ever been evaluated for gluten issues? I'm wondering because you've said you not only have digestive problems, but you've also got neuropathy. Those are two 'biggies' when it comes to gluten issues. In the medical setting I'm in, we see those symptoms in a number of individuals in conjunction with other diseases. It's only in the last few years we've learned to recognize where they might be coming from and do some testing.

I know 'gluten' is now a big fad, but for those with true issues it's not. It's a REAL problem that can bring a myriad of symptoms that can at the more severe end of things problems that look like M.S. and early dementia. Peripheral neuropathy is often one of the 'earlier' symptoms.

If you think there's ANY possibility part of the problem could be a food issue - specifically gluten, the component in wheat, rye and barley - consider doing a gene test to see what genes you're carrying. Enterolab is a decent place to do it. Then, if you do have celiac genes, or a celiac gene and another gene that could be considered 'high-level' gluten-sensitive, get off the stuff and find a doc won't brush you off and KNOWS about gluten issues.

[ChronicPanc123]

Hi Tylercrew,

I am now 16 months post-plasty. I did ok for about a year with digestion. Then I started having right side pain, but not the typical SOD sharp under the right rib pain. It has been more of a feeling of my liver is swelling and radiates up into my right shoulder. Then, two weeks ago I started having terrible D, intestinal pain, nausea, etc. which I believe is small intestinal bacterial overgrowth (SIBO) from being on antibiotics in November. I went back to my surgeon and he ordered an upper GI and small bowel follow through. Turns out the contrast pooled around my duodenum then refluxed up into my bile duct and liver. So, he recommended I have a biliary roux en y. This is likely the cause of my right side pain and occasional low grade fevers, but not likely the cause of my intestinal symptoms. I also have severe neuropathy which I attribute to the massive amounts of Levaquin I got from the sepsis after the surgery. But, it could also be due to my liver being taxed. I guess it is quite common to have this reflux which can be either asymptomic or cause cholangitis and other complications. Here is an interesting research study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2020535/. So, I will have this major operation at some point but need to get my intestinal issues managed first.

What symptoms are you having?

[tylercrew]

Hi, how are you since your surgery? I had the same surgery just over a year ago and sadly, I still have the same symptoms. Its very discouraging. I have had one of the best GI doctors in my area and they are at a loss. Its very discouraging! I saw your post and it intrigues me. I do hope you are doing well :)

[ChronicPanc123]

I am 6 weeks post-op from my transduodenal sphincteroplasty and pylorus dilation surgery. I am still nowhere near where I would like to be, but getting a little stronger  and better everyday. I have been relieved of the SOD pain/spasms. Once in a while I will get a twinge feeling in the SOD area, almost as though my body is trying really hard to spasm, because that is what it has been doing for the past 14 years, but can't as my sphincters have been cut and sewed open permanently. I ended up spending 4 weeks in the hospital. I contracted a bacterial infection and ended up in ICU. Also, I ended up with too much bile flowing back up into my stomach and small intestine. They couldn't get the loose stools under control. I have been home a week and a half and am still very tired and have intense abdominal pain from the surgery still. While in the hospital, I was given a picc line for iv tpn nutrition, which I am still getting. Unfortunately, I still have bad pancreatic pain--in fact it has been worse than ever the past few days even when I take my Creon (prescription pancreatic enzymes). However, I haven't been the best patient and have eaten foods I shouldn't eat like cookies, coffee, fats and dairy (things I couldn't tolerate prior to surgery and really shouldn't be eating yet). So, I don't blame my pancreas for being angry. I need to give her--and my liver--a good resting. I am going to try to do this today and tomorrow, but it is so hard since I have an appetite again (another success of the surgery). I will continue to update on my surgical progress so, hopefully, others can benefit from it. I hate when people post stuff and then never update.

[ChronicPanc123]

Thank you, doctor, for your timely input. This information is helpful.

[Christopher R Watters, MD]

It's actually a fairly simple, straightforward procedure. One makes a small incision into the duodenum across from the ampulla. you are now looking at the papilla and make a cut through the sphincter similar to those made during ERCP sphincterotomy but you place small sutures along the edges and carry it a little further. These are much less likely to heal back together and re-stenose. Most likely you would have a nasogastric tube down overnight and start liquids the following day. Generally, it would be a 3-4 day hospital stay.