Transduodenal Sphincteroplasty

[Sarsi]

Hi All!

I have been suffering with Sphincter of Oddi Dysfunction for the past 2 1/2 years. I have had an ERCP with Sphincterotomy which has not helped.

I am talking to my surgeon this week about surgical options......either a transduodenal Sphincteroplasty or a choledochoduodenostomy which is basically bypassing the sphincter completely and surgically attaching the bile duct straight into the duodenum.....

My question is, if anybody here has had these surgeries done, or know somebody who has and can give me some information on what to expect or even what questions to ask the surgeon.....

Thankyou

[BridgetO]

Hi all,
Scheduled for a transduodenal sphincteroplasty March 15, after no findings in all my labs, etc. I have heard the surgery is brutal and recovery is tough in the hospital.Can anyone walk me through it? My surgeon in is Indianapolis and I am in Dayton, so I only get to see him once in a while. Just wondering about how it is after the surgery, how long it takes before your able to be on your feet again, how long you spend in the hospital, open versus laproscopic approach? I can't find much online about it, and am just starting to get anxious. Hoping it will help the intense pain.I have had gastric bypass(roux en y), three bowel torsions and my gallbladder removed. Thanks all!

[tylercrew]

Hi! Im not sure what a biliary roux en y is. Can you give me more information on that? I had an appointment with my original surgeon this past Monday. He wants my GI doctor to refocus on me and see what else he an do. I kind of gave up for awhile thinking Im just going to have to learn how to live this way. Although some days are very hard and the pain can get so intense. The weight loss is still an issue as well. The only recent imaging I have had is an endoscopy. Which did show some areas of concern around the sutures from sphincteroplasty. Maybe its time for another upper GI series. It has been approximately a year and a half this that test was last preformed. Thanks for reaching out and giving me more info/insight to research into :)

[ChronicPanc123]

Tylercrew,

Has any doctor recommended a biliary roux en y? I had the sphincteroplasty and found out my duodenal contents refluxes up into my bile duct which I guess is common after this surgery. So, I get right upper quadrant pain from it. My surgeon is recommending this surgery but I gues it is even more major than the sphincteroplasty!

[ChronicPanc123]

Hi I had the transduodenal sphincteroplasty for SOD in October 2012. Digestive-wise I was ok for a year. Then I had to take antibiotics and a month later had uncontrollable diarrhea, itching, thirst, unintended weight loss. It's been a nightmare. My surgeon suggested a biliary roux en y as an upper GI showed duodenal contents refluxing up into the bile ducts. Tyler--have you had this test and did it show this? Have any of your doctors suggested a biliary roux en y?

[sadinla]

How long after the open surgery did your symptoms return? I had the surgery Nov 2013 and was pain free until 2-3 weeks ago. The pain isn't as bad yet but seems to be getting worse each day. I'm very disappointed!

[sadinla]

How long after the open surgery did your symptoms return? I had the surgery Nov 2013 and was pain free until 2-3 weeks ago. The pain isn't as bad yet but seems to be getting worse each day. I'm very disappointed!

[tylercrew]

Hi. I have read this entire thread. I wish I had read this sooner. I have been a sufferer of gallbladder removal, SOD, and yes, I did have the open surgery of Transduodenal Sphincteroplasy. Its was quite a brutal surgery. I had high hopes. I had everything less invasive done to prevent this surgery but nothing helped. I was told I was a good candidate for this major surgery. Its wasn't long before they symptoms returned after my surgery. It has saddened me and defeated my for the past 2 years. I know I may not offer any hope but this is my first time reaching out today on a forum. I have seen the best of the best doctors. I do not want to be told I have something chronic and still want to advocate. I am still searching for answers. You name the test, I have had it from labs to imaging. All have been normal. I have tried many medications and none have helped. I have been referred to pain management but I do not want to go that route. I want to treat the cause and not the symptoms. How are you doing today? I do hope you have found some relief! I am still searching for answers.

[Sarsi]

Hi there,

I hope that whatever surgery you decide on helps you.... I wish you well :)

My surgeon is still unsure of what to do with me, and has asked another surgeon for a 2nd opinion, so I'm doing more waiting to get an appointment to see him....

I just want a chance at getting my life back...

[1Chanceallen]

I read through this posting and as another long time sufferer of SOD I'm sorry to hear how things are going for both you and Sarsi. I have had SOD since I was a child but was only diagnosed as an adult about 7 years ago, they originally thought it was my gull bladder and removed it, and as most SOD patients know just makes your SOD worse in the long run. I have had many ERCP's, with balloon dialation, cutting of the muscles, temp stent placement (falls out wothin a few weeks, and semi-perm metal stent placement (which has to be removed within 60-90 days) on both my bile and pancreatic ducts. All of these have not been successful or the success has lasted at most a year in-between returning SOD pain, nausea, trips back up ER and the scaring shut. My dr has discussed doing a by-pass, but it sounds like now the surgeon is going to do a transduodenal sphincteroplasty which is where they not only cut the muscle they go in through your chest open you up, cut the muscle all the way around and sew it open. I'm nervous but excited as well, I really want to get my life back.

[Sarsi]

Hi,
Thankyou for enquiring about me....

Where I'm at.....ok....I have been getting great results and relief from biliary stents being placed and left for 3-4months....which is great and I am grateful for a few months of relief at a time, but it is not a long-term solution.

I have spoken with my surgeon and he is very hesitant, concerned about long-term complications from any of the surgical options. As such, he wants to get a 2nd opinion....which I'm waiting for an appointment to see the 2nd surgeon...

So more hurry up and wait...

[Beezer1967]

I just read your comments from the 26th of Feb.  Can you tell me where you are in your diagnosis now?  How are you feeling?  Did you in fact have the sphincteroplasty?  I have SOD, I was diagnosed @ 7 years ago following gall bladder removal.  I have had manometry of both the SOD and the pancreatic duct through ERCP.  I have also had several papillotomies.  With the last two ERCPs they placed temporary stents.  I have been hospitalized three times with acute pancreatitus.  I'm searching for a long lasting cure.  Any information you can give me would be appreciated.

Thank you

[Sarsi]

Hiya,

Just thought I'd touch base and see how you're doing..... I hope you're doing well and feeling better......

I have still been very up and down with pain and in and out of hospital still.....as such, the gastroenterologist wants to do a 2nd ercp and place some stents to keep the duct open while things heal from another sphincterotomy....
He thinks that I get high pressure in my ducts which is causing this pain and the spasms too....and if the stents and ercp give me relief by creating a constant opening, then this is indicative of this.
If the pain comes back again after an improvement then I may be a good candidate for a sphincteroplasty which is where they stitch the sphincter open permanently....

I am booked in to have this procedure done on March 7th.....and am quite nervous as a lot is riding on this.....but can't wait at the same time...

[Sarsi]

Hi There

Thankyou for responding to my post. I am sorry to hear that you are suffering and in so much pain! I hope that they can find and treat you quickly so you can get back to living life normally again :)

For me;
I suffer from a deep ache just under my right ribs which also radiates to the area just under my sternum and up under my shoulder blades in my back. My stomach gets very tender to touch and if my tummy is palpated, it is extremely painful in the epigastric and URQ quadrant. I also get sharp stabby pains and even some cramp/spasm like sensations so painful it takes my breath away! I also get nausea..... bleargh!

I don't get bloating, but it is a very common symptom. I also notice dark urine frequently. I have had several urine tests and it has been mentioned that there is blood present but I haven't had an "infection" as such.....luckily I am not prone to them.

Up until the birth of my 2nd son, I was perfectly healthy and had no prior digestive issues whatsoever.

I had my gallbladder removed 2 years ago; and the same pain is still present. While it was found that I did have stones and the gallbladder itself was inflamed, the train of thought now the gallbladder was only a symptom and not the cause......

I hope that this is of some help to you, and I hope that you can find some answers. I am still waiting to hear from a second specialist on his opinion, and also for an appointment to get the 2nd sphinterotomy and stent placement done. I am hopeful that this is going to be helpful otherwise I wll be looking at major surgery...... this has been going on now for 2 1/2 years and I am tired of living in pain and on painkillers :(

Feel free to message me any time if you have any questions

Best regards
Sarah

[AliDunne]

Hi
I'm not as far down the line as yourself, but I was admitted two night after a big flair up. my specialist (Professor Lobo: Queens hospital, Nottingham) is a leading specialist and the stent and stitch tends to be the most successful as the cuts can scar and need re-doing. Still havent decided if I have SOD but know I have BD of the gallbladder, could you give me some feedback on my background and any relation to yours?

I have been suffering with so called 'IBS' since I was a child(43 now) Recently, I have become really poorly with right upper quadrant pain and been rushed to hospital and been off work for 6 months. I have had every test possible to finally find out from a HIDA scan I have biliary dyskinesia and possibly Sphinctor Oddi Dysfunction. I have had two specialist with conflicting opinions; one has said not to remove the gallbladder as if i have SOD it wont improve things and i'll end up with the operation anyway, which can be high risk(the reason for this is I had an MRCP - pancreas pressure test come back normal so their not sure for definate) I really require a ERCP but the one doctor feels i should take the gallbladder first rather than risk the other test, which can cause pancreatitis.
I was admitted again two nights ago, virtually unconcious and given Buscopan(anti-inflammatry) to stop the pain.
This disease gives the most bizzare sypmtoms(i.e.breathless, fatigue,itchy bite-like spots on the face and neck, right groin pain, effected vision, severe bloating, weight gain and poor weight loss, headaches, swollen lymph nodes behind the ears  - the list goes on)
My question is: has anyone going through similiar problems and also in deciding what best? they seem to be leaving the decision to me, is anyone having repeated urine infection with blood and protein presant? Are others finding their off work.

Thanks

[Sarsi]

A Very Happy New Year to you as well!

Thankyou for responding to my post!

My surgeon actually wants me to try another sphincterotomy via ercp again.....but this time use a stent to keep the sphincter and bile duct open while it heals, as he feels that the last cut has just scarred over.....hence only a few weeks relief then back to normal!

I am hopeful of this working; but am honestly doubtful and as i live in Australia and stuck in the public system, do not know how long I will need to wait for this procedure again!

Sarsi

[seattlemom2plus]

Hi, I happened upon your post. Although I don't have an answer just wanted to wish you a Happy New Year!  Please stop back and let us know what your doctor says.