The only advice I will give is to first get a few more opinions. Other docs may have answers your doc doesn't, though you tests have been fairly extensive. After that, if you do decide on the ERCP, find a doctor who has performed lots of them. Interview a number of them and see how many of their patients have developed post ERCP pancreatitis. When done in good hands, your risk of post-ERCP pancreatitis is very, very small.
Thanks so much gnorb... I appreciate. Yes, I was told by the surgeon I met with that this gi doc is very very good at ercp. Still, I have had my share of being the 1 in 1000 in medical scenarios, and this makes me hesitate.
Have you heard much about many who have had the MRI and MRCP along with sono and still learned they had a blockage - undetected by the studies? I guess the sludge or crystals can be very tiny?
Also... I have a long history of myofascial/spinal pain. I'm 44 now and 4 years ago underwent a spinal fusion for lumbar problems. Pain has persisted and now I have a syndrome that impacts my neck/shoulder/scapular/jaw (upperbody). The ribs have been sore for many years. On top of all this I have a history of ulcerative colitis (though inactive). The bowels just never work right and use psyllium and senna daily. I sort of accept gi issues as a way of life all these years.
I'm now wondering if many of my issues can be linked to the bilarry system. I read that the phrenic nerve is shared by gallbladder/bilary system and shoulder/neck. Very suspect -
Do you know if many gallbladder folks have muscle/skeletal issues?
Finally, the whole issue of a hida-scan... I would love to know if my gallbladder is dyskenetic-- and I have a hunch it is... also the potenitial of sphincter of oddi dysfunction (I've had issues in past with anal sphincter muscle and fissure). The thing is that I was told if I did have some sludge in there - I would become severely ill from the cck... so I'm hesitant there too.
You know, right prior to this acute attack a month ago I took a large amount of an herbal supplement - Tumeric. I was taking it for the joint pain. Since then I read that tumeric is very effective at increasing bile production...and also contracting the gallbladder.
Perhaps it's just all a coincidence..but I wonder if I did't push out too much old bile that day - and backed up the pancreas?
Wish there were easy answers/clues so I knew what my next step should be.
Any thoughts... much appreciate.
I had an ERCP done just on Friday, October 24. I've been having severe epigastric pain for the last 6months with no answers tho. I had my gallbladder out cause there was a small stone. The pain continued so they thought there was a stone in my duct....no stone but there was dilation. my next stop is....actually i have no idea what my next step is. But the ERCP was not that bad. It took more to prep me then to do the actual procedure. bloodwork first, then the table prep. I think it took a matter of 30mins.
Thanks Dan... I'm glad you made it through the ERCP without any issues.
It's interesting that you had the gallbladder removed and that you did have a stone but it seems not to have been at the center of your pain. Before they removed the gb what other tests did you have? I'm assuming they saw the stone on a sono for you. For me they only see an 8mm polyp -
The one thing you may want to research is the Sphincter of Oddi dysfunction. I understand it mimics gallbladder pain - but is more about the muscle at the mouth of the duct going into spasm.
Is there anything that soothes you or gives you some relief from the pain? Is your pain constant or only associated with eating?
I wish you well, RobynLee
I had my gallbladder out because of intense pain (the only symptom) in Aug. I still have the same pain to this day. The pain radiated from my front to my right side (below the ribs) and to the lower back. I am on pain killers night and day and they are starting not to do me too much good. I have had an MRI and it didn't show anything. I am wondering if its either Oddi of Spincter or gluten intolerance. My fear is that a new dr that I go to on Monday won't find the problem. I just don't feel that I can tolerate this much longer.
I feel for you as I've lived with intense pain - unresolved by surgeries and other therapies for many years (14). When they decided to take the gallbladder out, was it because there were stones or other findings on the scans? Have you ruled out issues relating to disc problems in the neck or muscle problems in the shoulder/torso? I would imagine you had gi pain and symptoms like nausea/bloating/constipation etc.
The Sphincter o f Oddi conditon is tricky to diagnose. If you take a smooth muslce relaxant it may give you some indication if that it the issue. Also - be very careful with narcotic meds (percocet etc.) as they cause the sphincter to spasm and can even be the cause of SOD! It's very hard to stay away from pain meds when you are in this kind of pain...but beware of that class of drug.
Would you say since the gb surgery you have improved at all...or are worse off? I hope the former.
Consider doing some real good self-massage in the area of the pain and also the waist/hips - even legs. You can go to a professional if you have someone skilled.
Muscles can play a big role in our pain...though I suspect they aren't the primary cause.
Still a bit of relief is a good thing.
Can you sleep better on your back/side or belly? Sleep is a big problem for me as well.
Best to you always, RobynLee