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Chronic RUQ pain after gallbladder removal and sphincterotomy
I'm a 51 year old female. Fall of '10 I developed classic gall bladder symptoms: RUQ pain, including pain in my right shoulder and shoulder blade, nausea, but no vomiting or diarrhea or cramping, no bloating and no feeling or fullness after eating,a total weight loss of 30 lbs, fatty food intolerance, but normal stools. I had an ultrasound, HIDA scan , CT scan of abdomen-all normal. I also had a blood test for celiac disease. I finally had a cholecystectomy in Jan. '11 in Portland, Oregon. My gall bladder showed no stones, just signs of chronic inflammation. Still had constant RUQ pain. Next procedure was an EUS which only showed some minor abnormalities in my pancreas, so they gave me some enzymes to try, but they did not help. My doctor sent me to Seattle to the Virginia Mason hospital. There I had an MRCP which showed an enlarged common bile duct, then had an ERCP with sphinctermanometry, which showed increased pressures in both the common bile duct and the pancreatic duct, so the doctor performed a sphincterotomy. It relieved my nausea enough to start eating a little more, but did not mitigate my RUQ pain.
We tried acupuncture for months, with no change. Then we tried visceral massage with an Osteopath. Once again, no change.
I am now on Fentanyl, Norco, Flexeril and Promethazine to control the pain and nausea. My gastroenterologists gave up on me and told me to go to a pain clinic.
I'm a normal, happily married mom of 6 kids, but this daily pain is ruining my life. I am not stressed out, and I am not doing this for attention. I have good friends, I am a member of a church and I have a good outlook on life. I know that my pain is real and at times is excruciating. I want to get off of all of these medications but I can't go for more than 6 hours without narcotics. I've been waiting for months to get into our local teaching university (OHSU), but they will only see me one time for a second opinion. My husband and I are so desperate that we are willing to fly to another state to get help.
Do you have any other suggestions?
Thank you for your time,
KCH
We tried acupuncture for months, with no change. Then we tried visceral massage with an Osteopath. Once again, no change.
I am now on Fentanyl, Norco, Flexeril and Promethazine to control the pain and nausea. My gastroenterologists gave up on me and told me to go to a pain clinic.
I'm a normal, happily married mom of 6 kids, but this daily pain is ruining my life. I am not stressed out, and I am not doing this for attention. I have good friends, I am a member of a church and I have a good outlook on life. I know that my pain is real and at times is excruciating. I want to get off of all of these medications but I can't go for more than 6 hours without narcotics. I've been waiting for months to get into our local teaching university (OHSU), but they will only see me one time for a second opinion. My husband and I are so desperate that we are willing to fly to another state to get help.
Do you have any other suggestions?
Thank you for your time,
KCH
Best Answer
Good day Dr. Watters,
I have seen Peter Cotton's name attached to many of the articles that I've perused. I think you've made a great suggestion!
I must repeat my gratitude for giving my case your attention. I've been passed over so many times by insensitive doctors that I'm just so blessed by your efforts to help me. Thank you for your time!
I hope you have a great weekend,
Kelly
I have seen Peter Cotton's name attached to many of the articles that I've perused. I think you've made a great suggestion!
I must repeat my gratitude for giving my case your attention. I've been passed over so many times by insensitive doctors that I'm just so blessed by your efforts to help me. Thank you for your time!
I hope you have a great weekend,
Kelly
MEDICAL PROFESSIONAL
One of the most knowledgeable physicians in these problems is Peter Cotton at the Medical University of South Carolina. My understanding is that he is considering retirement soon after a long career of taking care of patients similar to you. He has been considered the world expert and I have sent particularly challenging patients to him with pretty uniform satisfaction from these patients. You may want to consider a trip given the dead ends.
Good day, Dr. Watters,
The CCK injection made me so nauseated that I was struggling not to vomit. It gave me intense abdominal cramps, but it didn't really induce the RUQ pain. It was hard to tell overall, because I was retching and the technician was hurrying through her part and pleading with me not to vomit.
I don't feel that it could be called a true reproduction of my original symptoms. I think we decided to do the cholecystectomy just because my gastroenterologist was out of ideas and my pain was so horrible. I had lost 30 pounds by then and I could only eat rice and graham crackers.
After that, the ERCP/sphincterotomy at least helped me to eat a little more, even if my pain is still bad.
I'm so frustrated because I feel like I have no where to go to get help. OHSU turned me down once and now will only see me one time for a "second opinion." After that, I have nowhere to go to get on-going care. My original gastroenterologist doesn't even want to talk about the original surgery, so he is not a resource. I went to another well-regarded practice who went through all they could think of, then they sent me up to Seattle to Virginia Mason. After that procedure, the doctor just told me there was nothing more that could be done and I would have to live on pain med's the rest of my life.
We are considering flying to another state to get care because I am desperate for help. My daily pain ranges from 4 - 8, and that's while I'm on Fentanyl, Norco, Flexeril, Xanax and Promethazine.
There has to be someone who can make sense of this. I used to be a normal person. I was happily married. I worked as a Certified Veterinary Technician. I had just adopted by 6th child. My life was going well. I just don't understand it.
Thank you for being kind enough to make inquiries into my case. I really feel honored.
Kelly
Portland, OR
The CCK injection made me so nauseated that I was struggling not to vomit. It gave me intense abdominal cramps, but it didn't really induce the RUQ pain. It was hard to tell overall, because I was retching and the technician was hurrying through her part and pleading with me not to vomit.
I don't feel that it could be called a true reproduction of my original symptoms. I think we decided to do the cholecystectomy just because my gastroenterologist was out of ideas and my pain was so horrible. I had lost 30 pounds by then and I could only eat rice and graham crackers.
After that, the ERCP/sphincterotomy at least helped me to eat a little more, even if my pain is still bad.
I'm so frustrated because I feel like I have no where to go to get help. OHSU turned me down once and now will only see me one time for a "second opinion." After that, I have nowhere to go to get on-going care. My original gastroenterologist doesn't even want to talk about the original surgery, so he is not a resource. I went to another well-regarded practice who went through all they could think of, then they sent me up to Seattle to Virginia Mason. After that procedure, the doctor just told me there was nothing more that could be done and I would have to live on pain med's the rest of my life.
We are considering flying to another state to get care because I am desperate for help. My daily pain ranges from 4 - 8, and that's while I'm on Fentanyl, Norco, Flexeril, Xanax and Promethazine.
There has to be someone who can make sense of this. I used to be a normal person. I was happily married. I worked as a Certified Veterinary Technician. I had just adopted by 6th child. My life was going well. I just don't understand it.
Thank you for being kind enough to make inquiries into my case. I really feel honored.
Kelly
Portland, OR
Dr. Watters,
I failed to answer about the ejection fraction on my HIDA scan. I believe the doctor said it 40%, which he called "borderline normal." I don't know if it's meaningful to mention,or not, but the technician performing the scan said mine was the largest gall bladder she had ever seen. That seemed odd since I'm only 4'11" and weigh 115 lbs.
Thank you again,
KCH
I failed to answer about the ejection fraction on my HIDA scan. I believe the doctor said it 40%, which he called "borderline normal." I don't know if it's meaningful to mention,or not, but the technician performing the scan said mine was the largest gall bladder she had ever seen. That seemed odd since I'm only 4'11" and weigh 115 lbs.
Thank you again,
KCH
Good day, Dr. Watters,
I am honored that you took the time to review my health information.
Regarding my blood work, all values have been normal except for a transient change in my pancreatic values post-sphincterotomy.
As for my manometry values, my doctor was not a good communicator, so I may not have recounted my information accurately. He was a good surgeon, though, because I did not have any issues with pancreatitis following the procedure. My stent stayed in place nicely for a few days and then passed out. I really appreciated this doctor's skill, but was shocked when he gave me no other explanations for my continuing pain and no other methods to control it.
I am relieved to hear about the possibility of the nerve block to the celiac plexus. I have done a lot of reading and had seen numerous articles about FAPS, and in particular, the type involving hypersensitivity of parts of the intestines. The articles that I had read were rather prejudiced in their opinions of those afflicted with that type of pain, and suggested it was mainly a "psychogenic" pain. They had the belief that many of the sufferers have been sexually abused in their childhoods, and this pain is just the residue of that trauma. They asserted that the patients needed counseling and reassurance, rather than medical treatment.
After surveying that diagnosis and those attitudes, I feared ever being diagnosed with FAPS. I figured it would mean I would never get any relief from this pain because I would be labeled whinny psych patient. Then I would be denied medication or any further medical procedures.
Your suggestion of the possibility of the nerve block makes sense and gives me hope. I've missed out on so much over the last 2 years. I want to return to my normal, happy, busy self.
Thank you again the gracious offering of your knowledge. You have given me hope and raised my spirits tremendously.
With sincere appreciation,
KCH
I am honored that you took the time to review my health information.
Regarding my blood work, all values have been normal except for a transient change in my pancreatic values post-sphincterotomy.
As for my manometry values, my doctor was not a good communicator, so I may not have recounted my information accurately. He was a good surgeon, though, because I did not have any issues with pancreatitis following the procedure. My stent stayed in place nicely for a few days and then passed out. I really appreciated this doctor's skill, but was shocked when he gave me no other explanations for my continuing pain and no other methods to control it.
I am relieved to hear about the possibility of the nerve block to the celiac plexus. I have done a lot of reading and had seen numerous articles about FAPS, and in particular, the type involving hypersensitivity of parts of the intestines. The articles that I had read were rather prejudiced in their opinions of those afflicted with that type of pain, and suggested it was mainly a "psychogenic" pain. They had the belief that many of the sufferers have been sexually abused in their childhoods, and this pain is just the residue of that trauma. They asserted that the patients needed counseling and reassurance, rather than medical treatment.
After surveying that diagnosis and those attitudes, I feared ever being diagnosed with FAPS. I figured it would mean I would never get any relief from this pain because I would be labeled whinny psych patient. Then I would be denied medication or any further medical procedures.
Your suggestion of the possibility of the nerve block makes sense and gives me hope. I've missed out on so much over the last 2 years. I want to return to my normal, happy, busy self.
Thank you again the gracious offering of your knowledge. You have given me hope and raised my spirits tremendously.
With sincere appreciation,
KCH
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As you probably already know, there are three types of sphincter of Oddi dysfunction. Type I is when there are typical symptoms along with ductal dilatation and elevated liver/pancreatic functions. Usually manometry isn't done in this group as sphincterotomy is pretty much uniformly successful in solving the problem as it probably represents a stenosis of the papilla rather than true sphincter of Oddi dysfunction. Type II is when ther are typical symptoms and either ductal dilation or elevation of liver/pancreatic functn tests. This may well be the category that you fell into. Sphincterotomy would appear to correct about 50% of these patients. Type III is the presence of typical symptoms with neither ductal dilatation nor elevated LFT's. Only 10-15% of these patients respond to shincterotomy. Many of the patients that fail to have their symptoms resolve with spincterotomy have been shown to have hypersensitive duodenums. This is the stretch of intestine that the bile duct empties into. One study looked at a group of patients such as yourself and a group of symptom free patients and inflated balloons in their duodenums. The group of patients that had been type II or type III had pain reproduced at a much lower pressure than in normal controls. One thing that has been done with these patients has been to block the celiac plexus. This is a collects of nerves near the takeoff of the celiac trunk overlying the aorta in the upper abdomen. This has traditionally been done to block pain from pancreatic cancer but the same nerves are responsible for sensation of the duodenum.
This is highly specialized stuff that very few physicians practicing outside of a tertiary care center would be up on. I would hope that the docs at OHSU would be able to help.
Oh, by the way, the narcotic issue shouldn't apply to you as the narcotics lead to spasm of the sphincter of Oddi. Yours has been cut so one would not predict an elevation of pressure with narcotics.
My final comment is that you stated that the pressures were elevated in both biliary and pancreatic portions of the sphincter. Typically only the biliary portion is dealt with with an endoscopic sphincterotomy. Usually a surgical approach is taken for the combined form where the septum between the two is divided and a formal sphincteroplasty performed.