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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
Kelly, I am SO DAMN GLAD you followed up. Please let us know what happens.
As an aside, I've worked with a number of people who were diagnosed with FM who also had the confounding factor of being gluten intolerant - either having 2 genes for intolerance, or 1 gene for celiac and 1 gene for gluten intolerance. Interestingly, the body discomfort gluten sensitivity 'added' to the problem, made the FM almost unbearable. When dietary changes were made, a number of them found daily living a heck of a lot more comfortable. I'm not by any means saying gluten issues and FM go hand-in-hand, but if there is ANY indication you could have food intolerance issues, please check it out.
As an aside, I've worked with a number of people who were diagnosed with FM who also had the confounding factor of being gluten intolerant - either having 2 genes for intolerance, or 1 gene for celiac and 1 gene for gluten intolerance. Interestingly, the body discomfort gluten sensitivity 'added' to the problem, made the FM almost unbearable. When dietary changes were made, a number of them found daily living a heck of a lot more comfortable. I'm not by any means saying gluten issues and FM go hand-in-hand, but if there is ANY indication you could have food intolerance issues, please check it out.
Hello again to Dr. Watters and CalGal,
Here's an update:
I went to OHSU and it was a total disappointment. They did not do a proper exam and also did not do a single test. They told me to go see their own pain doctors.
When I saw their pain doctors, they just diagnosed me with Fibromyalgia, which was NOT a new diagnosis since I've known I've had it for 28 years! Once they made that conclusion, they stopped considering any other answers for my RUQ pain. They just told me to start taking Cymbalta and Lyrica, and basically learn to live with it.
There's too much ignorance and prejudice among doctors toward people with Fibromyalgia. It's as if we don't deserve the same medical due diligence that "normal" people get. It is possible for us to have illnesses that are not related to FM.
So, I contacted Dr. Stuart Sherman at the University of Indiana, who agreed to review all of my records. About a week later, his nurse called to schedule me for November 8 and 9 to repeat the MRCP, the EUS, and an ERCP. Dr. Sherman must have seen something in my medical records that he felt was worth looking at again.
Dr. Sherman has worked with Dr. Lehman and has co-authored numerous articles pertaining to Sphincter of Oddi dysfunction, so I feel confident that he's going to be able to help me. If he says he thinks it's something else, then I will feel more confident with his diagnosis. Either way, I don't think he'll just send me home and tell me to go to a pain clinic like the other doctors have done.
Thanks again for your posts of help and encouragement.
Kelly
Here's an update:
I went to OHSU and it was a total disappointment. They did not do a proper exam and also did not do a single test. They told me to go see their own pain doctors.
When I saw their pain doctors, they just diagnosed me with Fibromyalgia, which was NOT a new diagnosis since I've known I've had it for 28 years! Once they made that conclusion, they stopped considering any other answers for my RUQ pain. They just told me to start taking Cymbalta and Lyrica, and basically learn to live with it.
There's too much ignorance and prejudice among doctors toward people with Fibromyalgia. It's as if we don't deserve the same medical due diligence that "normal" people get. It is possible for us to have illnesses that are not related to FM.
So, I contacted Dr. Stuart Sherman at the University of Indiana, who agreed to review all of my records. About a week later, his nurse called to schedule me for November 8 and 9 to repeat the MRCP, the EUS, and an ERCP. Dr. Sherman must have seen something in my medical records that he felt was worth looking at again.
Dr. Sherman has worked with Dr. Lehman and has co-authored numerous articles pertaining to Sphincter of Oddi dysfunction, so I feel confident that he's going to be able to help me. If he says he thinks it's something else, then I will feel more confident with his diagnosis. Either way, I don't think he'll just send me home and tell me to go to a pain clinic like the other doctors have done.
Thanks again for your posts of help and encouragement.
Kelly
I had thought about doing it before, but now I see it as a necessity, not just a convenience. It's unfortunate that MUSC will still not deal with me without my doctor's referral, even if I can obtain my records. Some places will allow you to self-refer if your insurance is okay with it.
I just don't see any problem with having multiple diagnostic options. If I wait 5 months to get into OHSU and they don't have a clue what to do, then I have months again to wait for another clinic to take me. I'm so hurt by the insensitivity of my GP's med assistant. She knows how much pain I'm in. She's talked to me before when I've been in tears, pleading for them to help me. How hard can it be to fax a pile of papers and make a few phone calls? We treat clients at our veterinary clinic with more kindness and commitment than that.
Well, today I will get started on getting my own set of medical records. I don't know what else to do beyond that, but it's something I'm sure I'll need soon enough.
Thanks to Dr. Watters and CalGal for your encouragement to take this step, which will help me have a little more control over my healthcare.
Kelly
I just don't see any problem with having multiple diagnostic options. If I wait 5 months to get into OHSU and they don't have a clue what to do, then I have months again to wait for another clinic to take me. I'm so hurt by the insensitivity of my GP's med assistant. She knows how much pain I'm in. She's talked to me before when I've been in tears, pleading for them to help me. How hard can it be to fax a pile of papers and make a few phone calls? We treat clients at our veterinary clinic with more kindness and commitment than that.
Well, today I will get started on getting my own set of medical records. I don't know what else to do beyond that, but it's something I'm sure I'll need soon enough.
Thanks to Dr. Watters and CalGal for your encouragement to take this step, which will help me have a little more control over my healthcare.
Kelly
CasperFrench, I completely agree with the doc on his suggestion. In fact, I'd highly recommend you get paper copies of any and all tests you have done and start your own file. The office may charge you to do the copying, but you are legally allowed to have that paperwork. Once it's in your hands you can decide how you want to continue your search for answers.
MEDICAL PROFESSIONAL
As a surgeon I would suggest that you get a set of your records. If you are having to do the footwork it would be good to have your own set for anyone that you may see in the future. I have seen many patients where I am one of multiple physicians that have rendered opinions and it has been quite useful when the patient has an organized set that we can go through together.
Good morning CalGal,
That's a great suggestion, too. Unfortunately, I'm not going to be able to see any other doctor at this time. My doctor's office says it's too much trouble to send my paperwork again to another clinic. I was dumbfounded when they told me that. Wow. What a slap in the face.
I hate this total lack of control over my health care. It doesn't matter that I'm suffering everyday, and pouring more and more harmful medications into my system, because it's too much trouble to fax some paperwork. Sorry to sound so whiny. I'm just sick of the hierarchy in the medical world. The patient seems to always be at the bottom of the food chain.
I guess I'll just have to wait until September to see if OHSU can do anything to help me. I called them again today to see if they would agree to see me more than one time, but they said they won't know until they see me.
I shouldn't complain. I know many of the people on this forum are suffering far worse than I am. I want to have an attitude of gratitude for all of the wonderful things in my life, and not just focus on this illness, but the daily pain just drags me down. I'm going to see a therapist next week who specializes in helping people deal with chronic pain so I can work on this from a different angle.
Thanks CalGal for your suggestion. I'll keep that in mind for later on. I hope you're having a good day.
Kelly
That's a great suggestion, too. Unfortunately, I'm not going to be able to see any other doctor at this time. My doctor's office says it's too much trouble to send my paperwork again to another clinic. I was dumbfounded when they told me that. Wow. What a slap in the face.
I hate this total lack of control over my health care. It doesn't matter that I'm suffering everyday, and pouring more and more harmful medications into my system, because it's too much trouble to fax some paperwork. Sorry to sound so whiny. I'm just sick of the hierarchy in the medical world. The patient seems to always be at the bottom of the food chain.
I guess I'll just have to wait until September to see if OHSU can do anything to help me. I called them again today to see if they would agree to see me more than one time, but they said they won't know until they see me.
I shouldn't complain. I know many of the people on this forum are suffering far worse than I am. I want to have an attitude of gratitude for all of the wonderful things in my life, and not just focus on this illness, but the daily pain just drags me down. I'm going to see a therapist next week who specializes in helping people deal with chronic pain so I can work on this from a different angle.
Thanks CalGal for your suggestion. I'll keep that in mind for later on. I hope you're having a good day.
Kelly
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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.