There are several different tests or procedures that can be done to show pancreatitis, acute or chronic. No tests are definitive for only one or the other. Tests for determining pancreatitis are, blood tests, stool tests, triglycerides tests, Xrays, ultrasounds, endoscopic ultrasounds, the secretin stimulation test, the bentiromide test (rare), CT-scans, MRCP's, MRI's and ERCP's.
Your wife has tested positive for acute pancreatitis (I assume) by the ERCP's, in addition to her elevated amylase and lipase levels. It appears now her condition has gone to chronic pancreatitis, which often happens after one or more acute attacks. The same tests are used to determine this, but very often blood tests are inaccurate in determining chronic pancreatitis as the enzymes no longer elevate with an attack due to the damage already done to the pancreas. Many of us with chronic pancreatitis do not show elevated amylase and lipase levels even during an attack, due to this deterioration, and other tests should be done if a correct diagnosis is necessary. Most knowledgeable gastroenterologists who specialisze in pancreatic diseases are aware of this, and do not place as much emphasis on the amylase and lipase levels as an indicator of chronic pancreatitis.
I hope this answers your question. If you need more information, please post again or email me.
P.S. I just read your earlier post about the strength and time of night of your wife's attacks. When she had her ERCP's done did they think to do an ERCP with manometry to test her sphincter pressure? Her attacks sound very similar to Sphincter of Oddi Dysfunction (SOD) attacks, and this is the only way to test for this particular dysfunction. It often accompanies pancreatitis and can be difficult to detect. When the person has a SOD attack, they feel a lot of pressure in the chest and sternum area, along with abdominal pain. The attacks are very sudden, they happen often while sleeping, and are horribly severe.
One of the frequent poster's on this board, I believe her name is Lor, suffers from SOD. If she sees this she can give you some more firsthand information.
Hope this helps.
What you said about the "SOD" attack causing pressure and pain in the breast bone area and is servere describes the attacks I had two years ago. I was hospitized with chest pains that would come and go. The doc thought it was angina attacks but all the tests and there were many showed no signs of problems with my heart. These attacks went on for about 9 months and only Nitro would ease the pain. They would happen all times of the day...some woke me out of a sound sleep. Those pains have stopped but a new pain has emerged that is constant . It is below my right ribcage and radiates to my back. Two weeks ago, I woke in the middle of the night with severe spasms in the common duct area...Wham! Wham! Wham!...It took my breath away and also curled the two toes on my right foot downward. It seemed as though that whole right side from the rib down to my toe cramped. Have you ever heard of anyone having that sensation before. Now my pad underneath those toes are numb. I also bloat severely after eating a meal with fat in it and the pain is only relieved by leaning over the couch. I have changed my diet drastically. I had my gallbladder taken out years ago..I'm being sent to Emory in Atlanta 'cause the doctors here can't help me. What do you think about all this?........Thanks.......Aniee
These previous attacks do sound like SOD attacks, and what is happening now sounds like pancreatitis problems. The bloating after meals and raised liver levels are both symptoms. It is good that you are seeing a specialist, I would suggest that you tell him about the problems two years ago and what is happening now. Ask the specialist to consider SOD and arrange to have you tested for it. The best diagnostic tool for this would be an ERCP with manometry to check the pressure on the sphincter. It is not always an easy condition to detect.
Do understand that with chronic pancreatitis many patients do not always have elevated amylase and lipase levels anymore during an attack. My levels do not elevate during milder attacks, only during acute attacks and then not always. The doctors may need to do further tests to make a firm diagnosis.
As far as the numbness and cramping in your toes...these SOD attacks can be quite severe, it may be that during the attack your clenched your toes and may have pinched a nerve, sort of like a charley horse affect, and that those nerves are still pinched or are still bruised. I wouldn't worry too much about that at this point, it they should return to normal with time. You need to be more concerned with the pancreas problem right now. Good luck.
Yes, Ainee, I have the exact same thing happen to me during the painful attacks that you described. I have severe charlie horse like feeling in my right leg all the way down to the toes and they curl under. I told my dr's about the leg cramping during an attack and they dismissed it as nerve pain, not related to the attack.
I too, have had the pain become more constant in nature and less cramping in the leg and toes. But my belly blows up like a balloon after eating the second meal of the day and for the remainder of the day it keeps bloating.
I have asked over and over about chronic pancreatitis and not a single doctor thinks I could have it due to normal LFT's.
I sit here at a computer, reaching out to you guys, because I have gone before so many doctors and have just suffered like an animal without relief.
I wish I could find an answer too. I feel sorry for everyone going through this misery. I want a life again, and to get rid of the pain.
If it was chronic pancreatitis,would there be any hope? I am losing my resolve.
I know you've had a lot of tests done, but have any of these doctors ever checked your amylase and lipase levels? Sometimes they'll show elevation with pancreatic problems, but not always. LFT's are liver panels, right? I was reading back through some of the posts and also saw that there was the possibility of SOD with you after a procedure several years ago, but they thought it was caused by one of the chemicals used in the procedure and wasn't accurate? Was that your comment?
I guess I'm just mystified why the doctor's wouldn't even consider the possibility of chronic pancreatitis after hearing about your symptoms and the mention of possible SOD problems in your past. There are other procedures that can be done to get a firm diagnosis, and sometimes you have to keep looking until the cause is found.
Have you done anything on your own to make it easier for yourself, like a strict low fat diet, abstaining from all alcohol, staying away from fried foods, etc., and has any of that made any difference in how you felt?
Just trying to help you find some answers. And of course there is always hope, even if it is chronic pancreatitis. I've got CP, it's not the end of the world, it just means some adjustments to diet and lifestyle, and it means finding a really good, compassionate gastro to recommend the proper treatment and pain maintenance to make things easier.