Transduodenal Sphincteroplasty

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

[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.

[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

[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]

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

[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...

[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 (pancreatitis).  I'm searching for a long lasting cure.  Any information you can give me would be appreciated.

Thank you

[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...

[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 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...