A patients success story

“I had surgery two weeks ago and wanted to give everyone an update. However, before I get into my results I want to discuss Deb’s message. When I shared the EPISOD study that showed Type III SOD didn’t have a good response to dual sphinctertotomy I wasn’t trying to put down anyone’s personal experience. If you have Type III SOD, and improved with the sphincterotomy I’m thrilled and thankful for you. In my case I was diagnosed with Type III SOD, even showed high pressure with manometry but the procedure made not difference in me whatsoever. Prior to having the ERCP with dual sphincterotomy I’d had a CT Scan, MRCP, and EUS that all showed a completely normal/non-dilated biliary and pancreatic duct with no abnormalities of the solid organs . All of my blood work was completely normal. When I had the ERCP the ductal system once again showed to be completely normal, but manometry showed high pressure. I had the procedure, was very fortunate that I didn’t get acute pancreatitis, and in the end the pain was completely unchanged. I felt exactly the same. In my case I didn’t have a pain free period after cholecystectomy, my pain became worse and constant immediately following cholecystectomy. Since that day (31 August 2012) I have not rested. I have read every book I could get my hands on about the anatomy and physiology of the biliary system, I’ve read more academic papers and journals on post-cholecystectomy than I can count, and I’ve even used radiology books to learn how to interpret my own scans. There is not a GI disease I’m not well versed on (even the obscure ones). Doctors are human, and in my case were not helpful in coming up with a diagnosis other than “functional abdominal pain,” or it’s all in your head.

Now for the good news! I’m cured, yes I’m really truly cured. On January 14th, 2015 I had surgery at Crousse Hospital in Syracuse New York. The Surgeon dissected and removed a 3.5cm residual cystic duct. I woke up from surgery, and knew instantly something was different. Since that day I’ve had absolutely no pain under my right rib cage, no pain radiating into my chest and between the shoulder blades, and absolutely no pain with eating. I’d like to say I’m pain free, but I developed an infection in my top incision port site, and still have some discomfort at that spot, but it’s nothing like or compared to the chronic pain I lived with starting the day of my cholecystectomy. The pathology report showed a “chronically inflamed cystic duct remnant with hypertrophied nerves, haphharzadly arranged in fibroadipose tissue consistent with a traumatic neuroma of the bile duct.” At my follow-up appointment the surgeon was thrilled as was I with the results. If you’ve read this far I thank you, and if you want to read further I’ll explain the boring method I used to come up with this possibility, and to seek out a surgeon. Needless to say I had the million dollar work-up over a two year period. In looking over and over again at my own MRCP and CT scans on disk I couldn’t get over how normal my insides looked. Every organ looked exactly as the text book said it should look. The only thing that looked a little strange was the cystic duct remnant. It didn’t look diseased, or dilated, or inflammed, it was just long (3cm by my measurement using the measuring tool for the CT scan). So I started doing some research on the cystic duct over a year ago. There was one study conducted that showed a long cystic duct, in itself, is not a cause for post cholecystectomy syndrome. Prior to using key hole surgery surgeons were trained to cut the cystic duct as close to the CBD as possible. Once they started doing key hole surgeries the incidence of CBD injuries began to rise. Therefore, surgeons got into the habit of cutting closer to the gallbladder and leaving a remnant. With that came the one (yes there is only one) study showing this method for removing the gallbladder doesn’t cause any problems. This was not exactly scientific as there was not double blind randomized trial, etc. as there was in the EPISOD study. Furthermore, I found many case reports from the 50′s, 60′s, and 70′s showing inflammation, residual stones, or neuromas in long cystic duct remants causing significant symptoms. Then I started reading about the anatomy and physiology of the cystic duct, and this is what I found. The most densly innervated part of the gallbladder is the neck where the gallbladder meets the cystic duct. The cystic duct contains both nerves and hormonal (CCK) receptors that act to, atleast partially, control the emptying and filling of the gallbladder. The spiral valves of heister and receptros are proliferated throughout the cystic duct and taper off terminating about 1/2 of a cm (5mm) from the CBD. The last 5mm of the cystic duct proximal to the CBD is not heavily innervated. I was originally diagnosed with biliary dyskenesia. My hida scan showed good filling of the gallbladder with no defects, good spiliage into the small intestine, but a very low ejection fraction of 3%. That means the cystic duct was more than likely the problem and not the gallbladder or the sphincter of oddi. I’ d exhausted all other plausable explanations, and took all of my research to a surgeon. He looked at all of my stuff and agreed to do the surgery,as having a laparscopic re-cholecystectomy was LESS dangerous than the dual sphincterotomy I’d already had. Needless to say it worked! However, I was wrong many times before I was right.

 

With all that being said, I’m not saying this scenario applies to any of you. What I am saying is the pain is not in your head and THERE is an explanation for it all. What it takes a Doctor who really wants to figure it out (in my case that Doctor or person was me). I wasn’t happy with their explanation and needed a better one. I did have visceral hypersensitivity; however, it was caused by a traumatic neuroma constantly stimulating the celiac plexus. Once the neuorama was removed I felt instantly better. I don’t like IBS or functional pain as a diagnosis, as I’d been labeled with both. And it took over two years, but both diagnosis were wrong and so was SOD III.

take care,

Greg ”

Message board commentary – No specific order of synic

Sonya Could this be the mystery to SOD 3? I know many of us have thought that the way they remove the gall bladder could be the issue as SOD really started when the laproscopic surgery was started to be mainstream.

Top of Form

 

Jennifer   Wow, I keep thinking it has to do with the 5 metal clips on my cystic duct! I think this could be the case for many of us.

 

Judanna   Quite incredible, now my question is for those of us who had pain and fat intolerance prior to GB removal that was indicative of SOD, could it be that the cystic duct causes the incorrect draining ability of the GB therefore reducing it’s ejection fraction and then what would the preferential treatment be ? Removal of the cystic duct but NOT the GB ?

 

Jennifer   Good question Judanna Cavallo! Is that even possible to remove the cystic duct and keep an intact gallbladder? I need to look up the anatomy again.

 

Jennifer   Sonya    I’ve read his post 4 times already and it makes more sense each time. And I feel like I have a lot of research to do on how my gallbladder was removed. I can relate to Greg…like him, I was diagnosed with biliary Dyskenesia with a ejection fraction of 15% And with pain after every meal. My surgeon said I would be crazy not to remove my gallbladder! I do have to say the pain after eating is much better BUT the attacks that I have once or twice a month are unbearable! Most of the time I’m pain free and live a normal life until the spasms start in the middle of the night and soon after I have a big attack! Sorry to ramble on! I’m just excited to find this post!!!

 

 

Michele Just to confirm, this was missed by all scans as well as ERCP? Very interesting. The difficulty will be getting the medical community to recognize this as an independent cause of biliary pain. For better or worse, it may help that “patient zero” is a man. I know that usually refers to the source of infection, but here I mean the fix!

 

Dawn  Thank you for sharing your story of success with this horrible infliction/dysfunction. I’m going for an EUS and will be asking them to completely check for this issue. You are one lucky person. I have had this issue for 12 years. Constant doctors and s…See More

 

Sonya    https://www.healthline.com/human-body-maps/cystic-duct

Cystic duct

HEALTHLINE.COM

Sonya    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3169892/

Cystic Duct Remnant Syndrome

NCBI.NLM.NIH.GOV

Sonya    http://www.sciencedirect.com/science/article/pii/S1878788611000658

Cystic duct remnant calculi after cholecystectomy

SCIENCEDIRECT.COM

 

Sonya The third article states : Conclusion-Cystic duct lithiasis is found frequently during cholecystectomy; CDL is often associated with preoperative pain, abnormal liver function tests and choledocholithiasis. It can persist despite preoperative sphincterotomy. The search for and treatment of CDL should be routinely performed during cholecystectomy

Sonya  I almost could smack my surgeon after reading this. Why didn’t anyone check for this during my gall bladder surgery? That is why the lap surgery is not the best. Then why wasn’t this condition not thought of after the gall bladder surgery? What if this is what is truly wrong then how do we get a surgeon to fix it? I am upset if this could have been easily fixed during the gall bladder surgery after the gall bladder was taken out. I have lost so much! I hope I can be fixed. I have CP too, but I think the SOD is causing so much pain.

Ashley Although i have dilation of my cbd and elevated liver enzymes (so I know My issues are derived somewhat from sod) I’ve also been told there is a mild inflammation of my “cystic duct stump” wondering how likely it is that I have some kind of nerve enhanced/aggravating neuroma going on in there

Ashley I was also told that is considered somewhat “normal” post cholecystectomy. This article really

Has me questioning that however

Sonya -Same here-I think that everyone was trusting the surgeon that did the lap surgery too much including other doctors. They just drag and cut and they are done and they do not check and trim the cystic duct. My surgeon did not even know if there were gall stones in it as he threw it away and normal protocal is to send it to pathology. My mom questioned him and he was being a jerk.

Martin – this is exactly what im goingv through for 2 years had a hida scan showed hallbladder function at only 20 per cent so they removed it after trying 2 ercps and perferating my dudedenol all bloods was normal aprtt from one showing sod but further bloods was in fact normal pain continued after removal of gb and oshaphagus spasms horrendous had the test for tht showing a bolox reflux tht was all they now have decided i have functional bowel disorder and possible sod 3 which is irrates by certain foods ie gluten dairy certain fizzy pops bowel is not working as it should im on morphine as i have addisins and fibromyalgia as well as painful bladder syndrome really am at the end of my tether as i feel dismissed by my surgeon and my gastro speicalist

 

Jennifer   Is the cystic duct where the metal clips are placed after surgery? I kept saying it’s the metal clips! This has been horrifically painful and it makes me really angry so many are suffering. :( how do we go about investigating this? I don’t want to go back to my surgeon as he was so arrogant.

 

Sarah : This is all very interesting to me Sonya   …. we’ve touched on this very point ourselves several times in our conversations haven’t we….. the remnant cystic duct stump after gallbladder removal via laparascopic surgery!!!!! I am super happy that Greg did not give up and kept fighting….. I wonder if this was part of my biliary dyskinesia problem all along….. and I went the step further and had a hepaticojejunostomy done, which again, eliminated the bile duct completely, and the remnant part with the cystic stump was cut out….. and I am feeling much better for it….. so I wonder at all this and if Greg has hit the nail on the head for many of us……

 

Sarah : .. yes, during gallbladder surgery, instead of stitching the cystic duct, they place the titanium clips…. on the remnant cystic stump….

 

Donna: omg. this is exactly my story, Sonya. I am 8 yrs post-gallbladder removal and able to eat less and less each year. I never had a good day after my gb came out. all my tests were the same as your friend.

 

Sonya :  I am reposting the conclusion to Article 3 AGAIN as THIS IS THE DEFINITION OF SOD 2:AND SPHINCTEROTOMY DOES NOT HELP- The third article states : Conclusion-Cystic duct lithiasis is found frequently during cholecystectomy; CDL is often associated with preoperative pain, abnormal liver function tests and choledocholithiasis. It can persist despite preoperative sphincterotomy. The search for and treatment of CDL should be routinely performed during cholecystectomy.

 

Sonya :  My thread starts with a man in my Pancreatitis/sphincteromy group at yahoo which of course is you. Jump in anytime. We have lots of question and need direction on how to get our surgeons to fix us. I think that the longated cystic duct explains SOD 3 and SOD 2. SOD 2 is cystic duct lithiasis-Cystic duct lithiasis is found frequently during cholecystectomy; CDL is often associated with preoperative pain, abnormal liver function tests and choledocholithiasis. It can persist despite preoperative sphincterotomy. The search for and treatment of CDL should be routinely performed during cholecystectomy. Do you think SOD 2 and CDL (Cystic duct lithiasis) is the same thing and that is why sphincteromies do not work?. The pancreatic experts and specialist were questioning SOD 2 as well as SOD 3 after the episod trial as there were SOD 2 people in the study and they did not benefit from the sphincteromies eithers. The head investigator of the study at Indy was my doctor and he told me that the invesigators were even questioning SOD 2 existence or if it does exist then it does not respond to sphincterotomy and anyone doing better after sphincteromy was a placebo effect.

 

Sonya : Study of the Cystic duct remnant calculi after cholecystectomy
Summary :Unrecognized lithiasis of the cystic duct (CDL) may be responsible for post cholecystectomy. This retrospective study looked at the incidence of CDL during cholecystectomy, as well as the context of its occurrence; recommendations for a practical surgical approach are offered.Patients and methods

Over a period of 30 months, 143 consecutive cholecystectomies (103 women, 40 men; mean age: 57 years) were performed by the same surgeon: 142 by laparoscopy, and one by laparotomy due to a history of previous gastrectomy. The cystic duct was always opened and milked upward in search of CDL before immediate clip occlusion or performance of cholangiography (106 times, 74.1%). In seven cases, cholangiography was impossible because the cystic duct was too narrow.

Results

There was no mortality. CDL was found in 21 cases (14.7%) and removed. This had not been identified by preoperative imaging (ultrasound or CT). Pain in the month preceding cholecystectomy occurred more frequently in cases of CDL (19/21[90.4%] vs 36/122 [29.5%]; P < 0.001). Similarly, liver function tests were more often abnormal with CDL (10/21 [47.6%] vs 30/122 [24.5%]; P < 0.05). However, neither jaundice nor gallbladder inflammation was predictive of CDL in this study. Echoendoscopy (EUS) was performed more often for suspected common duct lithiasis migration (CBDL) in patients with CDL than for those without (9/21 [42.8%] vs 26/122 [21.3%]; P < 0.05). CBDL was present in 12 of 143 patients (8.3%). This was treated by preoperative endoscopic sphincterotomy in 10 cases, and twice by trans-cystic stone extraction during the laparoscopic intervention. CBDL occurred more frequently in association with CDL (5/21 [23.8%] vs 7/122 [5.7%]; P < 0.01). In addition, CDL was still present at cholecystectomy in the four patients who underwent preoperative endoscopic sphincterotomy.

Conclusion

Cystic duct lithiasis is found frequently during cholecystectomy; CDL is often associated with preoperative pain, abnormal liver function tests and choledocholithiasis. It can persist despite preoperative sphincterotomy. The search for and treatment of CDL should be routinely performed during cholecystectomy.

Keywords
Cystic duct stones;
Cholecystectomy;
Post cholecystectomy syndrome
Sonya :  From the article above. Study of the Cystic duct remnant calculi after cholecystectomy
Summary :Unrecognized lithiasis of the cystic duct (CDL) may be responsible for post cholecystectomy. This retrospective study looked at the inciden…

 

Gregory    Hi everyone! I tried to read through all the posts, and I wanted to point out a couple key things about my situation. First, I never once had elevated liver or pancreatic enzymes, only pain after my gallbladder surgery. Prior to the gallbladder surgery my pain was intermittent, but immediately following gallbladder surgery it was much worse and constant (24/7). Another feature of my pain was certain body positions made it worse (i.e. sitting or lying on my right side would put pressure on the neuroma). Finally, the cystic duct remnant as a cause of post-cholecystectomy pain is a bit controversial. Case ReportThe American Journal of Gastroenterology 100, 491-495 (February 2005) | doi:10.1111/j.1572-0241.2005.41153.x

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Mark Topazian
Ronald R Salem
Marie E Robert
Painful Cystic Duct Remnant Diagnosed by Endoscopic UltrasoundPainful Cystic Duct Remnant Diagnosed by Endoscopic Ultrasound

Mark Topazian, Ronald R Salem and Marie E Robert

Abstract
Postcholecystectomy pain may remain unexplained and difficult to treat. This report describes three patients with constant postcholecystectomy abdominal pain that may have arisen from the cystic duct remnant or a neuroma of the cystic duct stump. In each case pain was exacerbated by pushing on cystic duct surgical clips with an EUS-guided needle, and temporarily abolished by an EUS-guided injection of bupivicaine and triamcinolone. Two patients underwent surgical resection of the cystic duct remnant and the third did not require further treatment. Two of the three patients had long-term improvement. EUS is a novel modality for assessing the cystic duct remnant and performing a therapeutic trial.

 

Gregory    Like the article I just shared there are some features to the cystic duct remnant neuroma, one that stuck out to me was constant pain. My pain was all the time, not in discrete attacks.

 

Gregory    I did not have a retained stone or calculi in my cystic duct, the post surgical pathology report showed a traumatic neuroma. I did a lot of research on neuromas of all sorts to find commonalities, and that is how I came up with this as a possibility.

 

Gregory    What shocked me through all of my research was the number of different things that can cause similar symptoms. Once my gallbladder was removed, and my blood work and scans were normal Doctors offered no alternate ideas. Here is a list of things I researched extensively that no Doctor ever told me about: Gastroparesis, bile reflux, median arcuate ligament syndrome (also known as celiac artery compression syndrome), cystic duct remnant syndrome, chronic giardiasis, superior mesenteric artery compression, chronic abdominal wall pain (also known as ACNES anterior cutaneous nerve entrapment syndrome). Of course you have the more common stuff too like: gastritis, chronic pancreatitis, acid reflux, IBD, celiac, crohns, and etc.

 

Gregory    Here is my PERSONAL take on SOD, and this comes from my personal experiences and hundreds of hours of research. Unless you have something else going on too, SOD comes in discrete attacks, and you will have elevated enzymes with those attacks. Those seem to be the only people who get REAL relief from sphincterotomy. I don’t, personally, believe in SOD type III and research from SOD experts confirm this (SEE EPISOD study about type III SOD).

 

Gregory    Martin, I want you to read about this procedure for bile reflux. Bile reflux is different than acid reflux, and it’s extremely painful and life altering. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1876986/

 

Duodenal Switch Operation for Pathologic Transpyloric Duodenogastric Reflux

NCBI.NLM.NIH.GOV

 

Gregory    Martin, have you ever tried the medicine remeron(mirtazapine)? It’ll make you very sleepy at first, but it’s good a good off label medication. It is a tetracyclic anti-depressant. It’s been found to help treatment resistant gastroparesis, appetite, and pain. It takes a few days for your body to adjust to the sleepy effect, but it’s worth a try. It’ll help speed up your gastric emptying, and will also help with the spasms. Bile is hitting your esophagus and causing it to go nuts.

 

Gregory    Hi Sonya, it was a combination of hundreds of articles, some unrelated. I’ll provide some this evening after work!

 

Gregory    http://www.ncbi.nlm.nih.gov/m/pubmed/15667511/

Painful cystic duct remnant diagnosed by endoscopic ultrasound. – PubMed – NCBI

NCBI.NLM.NIH.GOV

 

 

Gregory    http://www.ncbi.nlm.nih.gov/m/pubmed/1259103/

Reoperation for amputation neuroma of the cystic duct. – PubMed – NCBI

NCBI.NLM.NIH.GOV

 

 

Michele :  I am curious as to whether EUS could miss this if nor on the GI’s radar. I suspect that is possible given how many suspected type IIIs probably have had multiple EUS and even ERCP.

 

Gregory    For type III SOD also consider non digestive causes. https://www.aafp.org/afp/2001/0801/p431.html

 

The Abdominal Wall: An Overlooked Source of Pain – American Family PhysicianAAFP.ORG

 

 

Gregory    The intercostal nerves of the upper trunk and upper digestive track share the same dorsal horn in the spine. Pain alone can confuse the clinical picture. If your tests are normal (i.e.) type III SOD, start looking at other possibilities.

 

Gregory    Sonya, I’ve read the article, and although lithiasis and SOD may cause similar problems, they’re a different. With lithiasis the rise in liver panels and duct dilation is caused by the lithiasis(calculus, stones, etc.). In SOD the elevations are caused by a scarred, closed, or inflamed Sphincter of Oddi.

 

Michele : I used to have just pain. In 2010 I had ERCP and my pressure like yours was through the roof. They did sphincterotomy, I got pancreatitis, the usual. That started the summer from hell that ended with emergency appy and diagnosis of endometriosis, wh…See More

 

Jennifer   Gregory    could the metal clips on the cystic remnant cause pain? I have had constant pain since removal too. Prior it was intermittent just like you. I have not had a pain free period since removal, however my lipase is high. I think I must have two separate things going on. My expert sod Dr says the right side constant pain is NOT characteristic of SOD. However I do get attacks of pancreatic pain with elevated lipase. Not sure if I should go through with the ERCP.

 

Jennifer   Also what would we look for on our ct scans etc? A longer than normal cystic duct remnant? I

 

Gregory    My cystic duct remnant was over 3cm long, normal after surgery is 1-2 cm.

 

Gregory    Look for long, swollen, etc.

 

Gregory    Lipase is very specific to the pancreas. How high is your lipase? Is it consistent? Some people may just run a little high. So if your lipase is always a few points high that may be normal for you. If it swings up and down significantly that’s not normal.

 

Gregory    The clips themselves would not cause pain unless clamped down on a neuroma. Visceral pain comes from stretching, inflammation, chemical irritation, etc. It’s not somatic in nature so clamping, crushing, cutting etc. does not cause pain by itself.

 

Jennifer   I was actually found to have chronic pancreatitis at MUSC where they ran a pancreatic functioning test during the EUS. However EUS was normal, PFT was abnormal. Lipase usually runs around 150-200. Sometimes it’s 75 and sometimes it’s 25 (range 0-59). I know the difference between the pancreas pain and this constant URQ pain though. Dr at MUSc said constant pain is not SOD and most likely nerve damage, visceral hypersensitivity.

 

Gregory    The constant right side pain could be the pancreas. Considering the elevated lipase, and attacks of pancreatitis a sphincterotomy may help you.

 

Gregory    The constant RUQ pain could be intercostal nerve damage too.

 

Gregory    You’re definitely SOD II or I because of your lipase. See my article above about intercostal nerve damage.

 

Jennifer   The trial of EUS injected medicine into the cystic remnant could rule it out or in? I want to ask my Dr about that. thank you so much for all your info!

 

Sonya -My doctor was the principal investigator at Indiana University Health Hospital for the EPISOD Trials- He told me that there were patients in the study that were diagnosed with SOD ll in the study as their liver enzymes or pancreatic enzymes did rise during the testing and had high pressures during manometry.
They decided to keep them as part of the study. It is in the study review long version. Now he says that sphincterotomies did not help hardly any of them either. This shook up all the investigators and they were even questioning treatment all together and the investigators were saying that if sphincterotomies help then it is the placebo effect. Many major SOD/pancreatic centers are becoming hesitant even to do things for SOD II or only do a sphincteromies once since the study which many times it requires two cuttings as the first cut is tooconservative or the cuts adhere together. I believe sphincteromies do help some people and there were not to many SOD II patients in the study, but none- the- less this study has effected treatment of SOD I and SOD II. If sphincteromies do not help, then could it be the intercostal nerve damage or the cystic duct remenant causing all the pain? How do we get our doctors to listen to us. Some of us are in great pain and our world renown specialists are done treating us.

 

Judanna   I was in that study, even though I already had a sphincterotomy of the SOD only and had ducts too stenotic for manometry. The insertion of the stent into my Pancreatic duct made me very much worse and yes I had elevated levels post procedure which proved a pancreatitis and it took me 2 1/2 years to have a normal eating life off medication.

 

Sarah : I think that what Gregory    is saying, that for people with no significant findings, raised enzymes, dilated ducts etc etc and in constant pain which is uncharacteristic of the textbook sod symptoms… that this cystic duct issue MAY be a possibility that could be looked into….. possibly for many of us this ISN”T the case, but it’s possible for some of us that it IS…..

 

Sarah : Now, for me personally, I DID have raised liver enzymes on numerous occasions….. up until I had the transduodenal sphincteroplasty…. so that eliminated the sod component that was going on…. but, I was still in constant unrelenting daily pain….. and having just undergone the hepaticojejunostomy to eliminate the bile ducts completely, the pain is gone….. so it’s possible that for me, I had something similar going on with the cystic duct and even the common bile duct itself…. my dr’s could not name what was going on, past biliary dyskinesia, but I thank the Lord I found a surgeon willing to take a risk….. so it’s possible to have multiple issues going on I think…… and I am very thankful for Gregory    for sharing his post and being willing to join the group to talk about it with us….. I’m very glad you’re doing well Greg and that you found the answer for you :)

 

Gregory    Sarah is right on. All of my comments are mays and mights. My overall point is that we get stuck on SOD, especially SOD III, when in fact there is something completely different going on. There are so many possibilities, and the pure definition of SOD III is pain with NORMAL scans and blood work. Look for alternatives, in my case it was a traumatic neuroma of the cystic duct. For someone else it may be ACNES, MALS, intercostal nerve damage, or some other hard to identify pain syndrome.

 

Gregory    Sonya, I’m not surprised by the EPISOD study findings. There are people who in the early stages of biliary or pancreatic cancer have no pain. There first indicator of a problem is painless jaundice because of a biliary obstruction. My thought was “if the blockage is bad enough to turn them yellow, then how are they not in pain?” A lot of times there is no pain until the tumor penetrates the nerve plexus. So how could a little tiny sphincter cause so much pain?

 

Gregory    For me, the sphincterotomy made zero difference. Diet didn’t help, and neither did any of the IBS Meds.

 

Ashley : I think the entir point of the conversation is there could be other biliary issues causing this often elusive pain. One being, in his instance,
Biliary neuroma. It’s just another option to explore

 

Gregory    Not at all . Some of you have documented CP, and SOD know that’s what you’re dealing with. Many have been given the label SOD III, but have never or rarely had a scan or blood test confirm the diagnosis. The cystic duct is really not the point at all, this was my very unique situation. In previous posts I’ve given lists of things that often get ignored by doctors.

 

Gregory    If you’ve had SOD and pancreatitis then that’s what you have. I had chronic biliary type pain after gallbladder removal, but never once had a documented case of pancreatitis. My scans were clean, and so was my blood work. I was given the label SOD III and given a dual sphincterotomy. There are some who’s lives are saved by this procedure, but it should’ve NEVER been done in my particular case. Very few have a cystic duct neuroma, but if one person can get their life back the way I did I’m going to share.

 

Wendie  - your research is fab!
I had AP long before my first ERCP and some get a diagnosis in the absence of abnormal bloods, or scans.SOD 111, is a bit like IBS there’s obviously a cause but things need investigating further.

I don’t believe in IBS, I was given the with high CRP & Amylase!!

 

Monika : I am type 3, which they say doesnt exist and that its ibs. They refuse to do anymore testing, when everyting is always normal. Never had pancreatis once. I have had two ercps, no relief.

 

Michele :  Poor Greg. He had no idea what he was stepping into. . I know he wants to help but I think his point is that we all need to advocate and research and that his issue is one possible cause of symptoms without any abnormal test results.

 

Gregory    Kim, it sounds to me like you’re a true & accurate SOD diagnosis. You have attacks, and with those attacks came elevations in your liver enzymes. Here is my theory and it’s just a theory. My guess is that your gallbladder was removed for stones (if it was low ejection fraction my theory is wrong…lol). Anyways, if it was removed for stones you are probably predisposed to the formation of stones, and had been passing stones for many years causing irritation and scarring to your sphincter of oddi. Once your gallbladder was removed you lost your reservoir for excess bile, so it started backing up into your liver causing pain, inflammation, and elevated enzymes. The sphincterotomy probably did the trick, but you had retained stones that continued to pass periodically for a couple of months causing additional attacks and elevations, but once your biliary tract cleared all the stones and healed your attacks and elevations slowed down. With the loss of one problem, comes the consequences of another. Excess bile in the duodenum can back up not the pylorus/antrum region of your stomach. The pylorus and antrum is on the right side of your body right over the head of the pancreas. Bile is very irritating to the stomach, and the very caustic bile could be causing pylorus spasms which feel just like a SOD attack because of the location. All just a theory…

 

Kim : Makes sense! Thank you! They did feel that I may have had a stone but never actually found one when it was removed. The first attack that I had post sphincterotomy, they also felt may have been a stone, but again they never saw it with imaging studies. I’ve wondered for a while if the reflux I suffer is from bile. I’m on max doses of PPI’s with Pepcid as needed, and still have a lot of reflux.

 

Gregory    Once your gallbladder is gone you’re predisposed to bile reflux. Bile is a lot harder to deal with than acid. A very good natural product is Iberogast, you can order it on amazon. You put 10-20 drops in a glass of luke warm water 30-minutes before meals and it’ll help a lot with reflux. It’s a pro kinetic a lot of gastroparesis patients use if they have bad reactions to the regular medications. Also you could try to a glass of metamucil an hour before bed. It’ll soak up some of the bile and push it through your system.

 

Kim : My gastric emptying study did show gastroparesis as well. I think you’re on to something. Will look into the Iberogast. Thanks! And thank you for joining this group. You’ve definitely done your research!

 

Gregory    Also, remeron (mirtazapine) has been used, off-label, to help with treatment resistant gastroparesis. Unfortunately, PPIs can actually aggravate the situation because it increases gastrin production which further slows gastric emptying. However, you have to follow Dr’s orders with PPIs because acid and bile together can really do damage…

 

Judanna   And to, Gregory   , PPI’s can make a non biliary patient no longer make enough digestive juice in the future for that person to digest foods ! Can you imagine what it does to Pancreatic insufficiency patients like us ?

 

Michele : Alexander I agree that PPI is the wrong way to go. I recently had an EUS where they saw inflammation and bile in the stomach. A nurse called for follow up, told me the dx was gastritis and called in a prescription for PPI. I started it and then between the side effects and reading up on the medication, I questioned why I would be on a PPI for bile reflux. I stopped taking it because between the side effects and another health issue, I was overwhelmed. I now have had treatment for the other problem and now I am starting to focus back on this, so I will follow up and insist on speaking to the doctor. There also was something next to the pancreas that they wouldn’t biopsy because of medication issues, but it wasn’t on a recent MRCP so they want another EUS a year after the first one and they plan to biopsy at that point. Sounds like it isn’t the same place you would expect to find a neuroma.

 

Gregory    Michele, if you have bile reflux/gastritis that IS the source of your pain and it will be severe. All of my upper scopes were clean. My stomach was pretty and very light pink. Almost looked to good…

 

Gregory    I think PPIs are bad, but I don’t want to ruffle feathers.

 

Michele : I think there is a bile duct issue too, though I agree that bile reflux is causing some of the pain. The reason I came back to the biliary/pancreatic issue is that I started getting that awful, colicky pain on right side that radiates to back, and the …See More

 

Judanna   BTW, Gregory   , nice to meet you & thank you for joining us ! Just so you know quite a remarkable thing is happening to me, right now. From what I understand I may have had undiagnosed Sarcoidosis all these 11 years since the SOD first started 6/2004 PRIOR to Gall Bladder removal ( 1/2005 ) as only a little over 2 years later, ( Sept 2006 ) did the all over joint pain begin which was diagnosed as “Fibromyalgia” 18 ms after onset. And here’s the amazing kicker, I was diagnosed as having a Thyroid Cancer Recurrence this past Nov. and had extreme swollen lymph nodes compressing my submandibular and neck, hoarseness, some coughing as well with Anti- Thyroid Globulin Antibodies for the first time. 3 months ago I started growing purple lesions on my hairline which are getting worse and the biopsy will be back by next Tues, but my SED Rate ( Sedimentation ) is a 59 and should not be over 20 and I have a positive ANA. ( Anti Nuclear Antibody) Apparently Sarcoidosis causes joint pain, Biliary Diskenesia, swollen lymph attacks, and here’s the kicker, it can raise your Anti-Thyroid Globulin Antibodies !!!! Can you imagine if I truly do not have a Thyroid Cancer Recurrence going on since November, but I fact I have had undiagnosed Sarcoidosis all this time ???

 

Gregory    That is so much to deal with Judanna, I can’t even wrap my mind around it all I’ll be praying for you…

 

Kim : I hate PPI’s. I was put on them for suspected gastritis when I started having the RUQ pain. They suspected gastritis because I had been on high doses of NSAIDs for my autoimmune arthritis. I don’t remember having an reflux at the time. Now I have reflux though, and there’s no way to come off the omeprazole without a lot of discomfort and choking in my sleep. I’ve literally become dependent on it. My body doesn’t know how to function off of it.

 

Gregory    Jennifer, based on your particulars it’s worth checking out. But, I’d still carry on with the nerve ablation, as the intercostal nerves could still be an issue. However, with the method they used to get your gallbladder I’m thinking you may have some possibility there. I wonder if they can do the EUS guided block to see if that hits the spot??

 

Gregory    A few things, for me, that pointed to the traumatic neuroma. First, my pain became instantly worse the day of the surgery. What was once occasional attacks of discomfort became a constant gripping pain under my right rib cage that radiated all over my 7th/8th dermatome. I didn’t have the honeymoon period where I felt good and then had attacks. It was night and day. I went under pain free and woke up with constant pain. Second, I didn’t really have nausea or eating issues. Eating hurt, but it didn’t really matter what I ate. I could stuff down a Super Size McDonalds meal and it had no lasting effect. The pain was present all the time. The third thing was that movement, sitting for long periods, lying on my right side, bending down to tie my shoes, etc. made the pain worse. From reading about traumatic neuromas in other part of the body I learned any kind of pressure, pinching, stretching, etc. would cause somatic type pain. However, because the gallbladder and cystic duct also has vagal afferent nerves you also get the feelings of fullness, hunger, etc. Finally, every test I had was freaking so normal and clean. The only thing odd to me on the scans was a 3+cm cystic duct.

 

Gregory    If you have the MRCP look about half way up your CBD. You should see a little stump, or in my case a long stump flopped out over your duodenum. That’s your cystic duct. On the CT scan look for the metal clips. Measure from the clips to the CBD.

 

Gregory    Ideally it’ll be 1cm or less, but 1 to 2cm is normal. Anything over 2cm I’d consider very suspect.

 

Sonya:  Gregory   I knew it when I read your story and now reading your post of where your pain was that this could be what is wrong with me and possibly many of us.. The lap surgery drags and cuts and it would only make sense that the cystic renement is not dealt with correctly and is too long in many of us as I do not think only one surgeon would make this mistake. . I do not think it would be unusual or even unrealistic to think that this is not happening again and again as issues with pain after gall bladder surgery and SOD is a relatively new phenomena that occurred after the lap surgery. We would discuss this all the time when this group was first started that SOD or pain after gall bladder seemed to explode after the lap surgery. But your discovery comes at a time when all the specialist and researchers are questioning if the actual condition exists or they feel it exists but the treatments (sphincteromies) do not work on SOD 2 or SOD 3) Three things could be happening. with the cystic duct renement 1. Could explain SOD III for some of us (maybe many.) 2. People could have SOD II and IN ADDITION have cystic renement and that explains why sphincteromies are not dealing with the pain. I had SOD II and now I am classified as SOD 3 as I had sphincteromies and the ducts are supposedly open as of two years ago. I originally had pressures over 500 on both sides. My SOD specialist did dual sphicterotomies and had to repeat it a few months later and then did progressive stenting-Some things happened with the sphincteromies-My liver enzymes, billirubin, very high WBC and Red blood cell count all went to normal. My enlarged spleen went back to normal (they thought I had luekemia due to the blood work, enlarged spleen and night sweats ) BUT I STILL HAVE PAIN- and everthing is open as of two years ago so they say I am SOD 3, so I think there is something to SOD II, BUT SOMETHING ELSE IS MAYBE CAUSING THE PAIN, The researchers are confused why the sphincteromies are relieving the high pressures and NOT the pain, so they are questioning if the high pressures are causing the pain. WHAT is causing the pain>cystic renement duct would make sense. or 3) There is only SOD I- as there is a deformity in the ducts and abnormal bloodwork, high pressures and the cystic renement is causing the pain and SOD 2 and 3 may not even be a condition. That may be far fetched, but I am throwing it out there. I think it may be 1 and 2. That is my uneducated opinion.

 

Gregory    I need to locate my pathology report, so you can actually show them something concrete. Full disclosure, you’ll find literature against the cystic duct, but all of that is post key hole surgery. Look at a couple of the things I posted from the 60s and 70s and you’ll see the recommendation to not leave it behind. Post-cholecystectomy syndrome is booming epidemic.

 

Sonya : Many of us are going to be talking to our specialist regarding this. Could you write up a formal report of your findings and include the articles and your surgeon’s notes and reports, so we can present it to our doctors/ Also could you have an easier verson so that the novice will be able to understand it and will be able to explain it tor their doctor. I think that you are really on to something.

 

Gregory    Reoperation for amputation neuroma of the cystic duct.
Zeff RH, et al. Am J Surg. 1976.
Show full citation…See More

 

Sonya : Could you write up you own case study on yourself or have your surgeon do it so we can show our doctors? Also, I want to present it to the SOD specialists too. Would you be willing?

 

 

Gregory    I’ll have to try to find my medical reports. I used to have them so organized and together, but when you’re feeling well you don’t look at the any more. I moved recently too, so I’ll see what I can put together.

 

Sonya  : Did you read my long post I just posted? I put it up and took it down and resubmitted it as I am curious on what you think. Thanks for being willing to write a case study and share your records. I am desperate. I am in pain!

 

Gregory    I’ve actually talked to the University of Indiana about my situation, and said “I’d be happy to share my experience.” I didn’t get a call back (they did my dual-sphincterotomy). I’m active duty military, and I’m deploying this fall (September). I’m willing to share any information I have with anyone who’d listen but I’m not a doctor so I’m not sure a case report on myself would hold any validity. I will, however, send a copy of my surgical and pathology report once I find it.

 

Gregory    I’m very nervous about giving people false hope, but I’ll share whatever I have to share.

 

Gregory    I don’t think people should start cutting people open and fiddling with the biliary system, but I do think the EUS guided nerve block into the area of the residual cystic duct should be advocated before clipping a SOD III patient’s sphincter of oddi. …See More

 

Gregory    An EUS guided nerve block has about .000001 percent chance of causing pancreatitis, and has no long term effects like losing your God given, specially designed protective barrier to your pancreas and liver…

 

Jennifer   I can present it to MUSC, another top SOD hospital. Sonya    the problem with us is we have confirmed CP which causes significant pain. I’m not sure this is the answer for us. However I have had the exact same experience as Gregory    in that I woke up with severe pain immediately after surgery that never leaves me. I did not have stones but rather inflammation. It is constant in my ruq and the top biliary docs all have said constant pain in the URQ is not characteristic of sod. I’ve never had elevated liver enzymes but do have elevated lipase. Gregory, did your ruq pain feel like a severe gnawing raw pain? I always compared it to having a metal clip clipped to a sensitive part of the body like a fingertip and just leaving it there forever. I wanted to reach into my chest and pull off the clips because I kept saying the pain from the metal clips made me want to crawl out of my skin. Now that pain is better due to amitryptyline but I still have the constant URQ pain, just milder. Can you describe what your pain felt like?

 

Gregory    My scans had a measuring tool you could use. I could pick it out in a second, but the MRCP should be easiest to see.

 

Gregory    You won’t see the clips on the MRCP, but you should see the filled cystic duct with contrast. It’s possible though your cystic duct is scarred to the point it won’t fill. From reading radiology books the clipped end of the cystic duct should have a tapered rose bud appearance.

 

Gregory    It may be hard to distinguish from the rest of your hepatic ducts unless you know what you’re looking at.

 

Gregory    The cystic duct is narrow, but you should see the clips on your CT scan.

 

Jennifer   Gregory    did you have spasms or what felt like “baby kicks”/muscle spasms in that area? If so I wonder if it’s the cystic duct trying to fill up with bile as if the gallbladder was still there. I also wonder if the cystic remnant itself causes the sphincter to spasm.

 

Gregory    Sorry, two conversations at once. My pain felt like very intense pressure. If I sat down and slumped it was worse. Radiated straight through to back and right side. If I squeezed or flexed my muscles on the right side it’d spike the pain.

 

Gregory    Ok, if you have a residual cystic duct you should be able to see it. Start where you CBD and pancreatic duct come together at the sphincter and work your way up the CBD. It should be about half way up the CBD and looking at the screen extend out to your left (it’s actually the right side of your body, but it goes left looking at it).

 

Gregory    There are some different anatomical variations, but the most common is how I’m explaining it.

 

Cecilia Kinzie I wouldn’t worry about giving anyone false hope. You’re simply sharing information that there might be more going on in SOD III than what we have been told. Thank you for sharing.

 

Gregory    Jenn, it may be obstructed by the duodenum.

 

Gregory    Ok, you’re in the right spot, but it’s not super clearly defined. You’re looking at a 2d picture so if it extends backwards it may be longer than 1cm. Furthermore, depending on the screen your using the measurement isn’t accurate. The measuring tool is for the sagittal view.

 

Gregory    The second picture is a better look. You have a pretty long cystic duct remnant. Your CBD kind of takes a a hard curve and the junction of the cystic duct and CBD is such that’d it be hard to get right up against the CBD. See how the CBD almost horseshoes around the junction of the CBD. Very tricky to get in there. Also the small intestine is about 2-3 cm in diameter and you can see the cystic duct length is comparable so I don’t the 10mm is correct. The sagittal view would be the slices through the core of the body top to bottom, not a put together view like what your seeing now.

 

Gregory    Your ductal anatomy is challenging because of the huge curve where the cystic duct meets the CBD. Your CBD is usually anywhere from 4-8 mm in diameter, and your small intestine 20-30 mm. Your cystic duct remnant is definitely twice as long as your CBD is wide and comparable to the contrast in your small intestine.

 

Gregory    Do you see what I’m saying? My CBD was more straight up and down, and the cystic duct stuck way out. Yours looks just as long as mine did on the MRCP, but the horseshoe kind of sucks it in. In some MRCPs it looks like a tiny stump or bump.

 

Gregory    For people where it’s completely resected.

 

Gregory    I hope for your sake it is, but I’d feel so much better if you could get the EUS guided injection first. I’d just hate to feel responsible for putting anyone under the knife…

 

Gregory    Very true, I’ve been to the point your at too. Where I just don’t care any more. I can tell you letting Dr. Anderson do his thing is far safer than an ERCP. He will try to discourage you a little though…lol But he has a great bedside manner, and he’s very thorough

 

Jennifer   I hope it is Jennifer MacLean!! Is this Mrcp with secretin?? Or just regular mrcp?

 

Michele :  Ok now I am going to see if I can make out my CBD on the MRCP images. Well, maybe tomorrow. But I will. This may be rare but I think it is a much needed kick for everyone to start thinking outside the box and stop holding onto a dx that doesn’t fit. For better or worse, the endo dx in the midst of this proved to be the more complete answer to why I had so much pain, but if there is a chance to get an even more complete answer, I am in. I think we all have to remember that the answer may be different for everyone, even though this story may directly lead some to the same answer as Greg.

 

Jennifer   Thanks for posting the pics although I can’t tell where it is. I think I know but not sure.

 

Gregory    And whatever you do, don’t feel grateful to me. All of my information and research came from professional doctors and surgeons who practice at institutions like Mayo Clinic and Cleveland Clinic. It was Doctor Anderson’s expert hands that went in and removed the rest of my cystic duct without causing any further damage that returned my life to me.

 

Jennifer   Jennifer and I both have similar situations in that we are both very thin – around 90 lbs. my surgeon commented to me that I was the thinnest person he’d ever done the surgery on so I wonder if that complicated things for him.

 

Jennifer   Gregory    when they removed the remaining remnant, did they use sutures to close it up as opposed to more clips?

 

Gregory    Less room to work, smaller anatomy, etc.

 

Gregory    Clips, no issues at all.

 

Gregory    The most heavily innervated part of the gallbladder is where the cystic duct meets the neck of the gallbladder. Working away from the gallbladder you have the spiral valves of keister that contain muscle cells in and nerves that respond to various hormones (CCK) used in digestion. The closer you get to the CBD, the less densely innervated you cystic duct becomes. the proximal 5mm to the CBD have very little nerve and smooth muscle cells.

 

Gregory    Jennifer, I still think that could be a possibility for you. If it is, cutting your abdominal wall open could make it worse, but they make the port holes lower on the abdomen so who knows…

 

Jennifer   Did they cut you open Greg as opposed to going in laprascopically again and trimming it? Is the incision left to right?

 

Gregory    My back pain was very severe, especially lying down at certain angles.

 

Gregory    When I woke up from the second surgery it was so strange not having the back pain. My belly hurt like hell from the incisions, but my back and flank disappeared like a thief in the night. It actually made me anxious for a couple of days after.

 

Gregory    Hard to say? So when I really overdo it in the gym my incisions on the front will get a little sore and kind of radiate to the back at the same level, but it’s much different than what I had before the surgery. For one it goes away, two it’s in a different location, and three its like a dull ache, not life altering pain.

 

Gregory    The neuroma felt like it was going through my body, it was a deep, aching, constant, miserable pain. Extreme pressure and when I’d twist or lay down it felt like my spine would snap at times.

 

Gregory    When I did have the neuroma I seemed to feel best first thing in the morning, I didn’t feel good it still hurt but I felt better. As the day went on it’d just escalate.

 

Jennifer   I wonder why more women tend to suffer with this pain than men??

 

Gregory    And no diet helped. I lost so much weight at first just not eating. Low fat, no fat, liquid diet, all carbs no protein, all protein no carbs, food combining, and then finally I just ate whatever the hell I wanted and gained a bunch of weight with no difference in my pain at all. It was a 24/7 life sentence with no break, so I figured it hurst to eat and hurts not to eat??? Might as well eat…

 

Gregory    Very interesting point Jennifer Wallace. Doctors didn’t know what to do with me because I’m a 6 foot 200 pound career military officer. Never had a digestive issue a day in my life, caught a stomach flu and within a couple months had a 3% ejection fraction gallbladder. Prior to that I had the stomach of a goat, could eat anything. Then, once the first gallbladder surgery was over I found myself in chronic, awful pain. I didn’t fit the profile they were used to, and I had a rather nasty disposition when I was belittled by a Doctor. I started out as a gentlemen, but the minute they suggested I was a head case I got a little difficult to deal with.

 

Gregory    Well all, it’s way past my bedtime. I know what it’s like to be in pain, and I have a hard time breaking away when people who are suffering are asking questions. Good night!

 

Jennifer   Not sure why that posted 3 xs, sorry! My pain is the same. Morning is the best and by end of day im constantly rubbing my side, so much pressure and pain.

 

Jennifer   Greg, you are our hero!!! Praying this helps many of us.

Sonya    I found this slide in a doctor’s presentation regarding Postcholecystectomy Syndrome. It says at the bottom of the slide that they leave the cystitc duct long by design in lap surgery to minimize BD injury. SO our cystic duct is left long by design so that explains why it may hurt in some of us. Possibly? Right?

Gregory    I saw the last post and that’s what makes me nervous for all of you. A long stump, in itself, does not alway cause symptoms. It is a bit controversial. But it cured me, and according to the few articles I posted it helped others as well. I think it’s kind of luck of the draw with developing a neuroma. Some scar over and have no issues, and others develop symptomatic neuromas. I do, however, think leaving a longer cystic duct leaves a greater risk of causing issues down the road. It may be residual stones, inflammation, bile stasis, or a neuroma.

Sonya    Gregory   -No worries. I said in some of us.  Even if this helps a few, it is worth it. But I think you are on to something. Some of us have lost everything and it is worth looking into. Thanks for sharing your story.

Sonya    But I will add that incidents of issues after gall bladder surgery increaseed significantly after the procedure was done laproscopically and that is when the cystic duct was left longer to avoid a bile duct injury.

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