I have been experiencing constant deep aching pain in my upper abdomen and back, nausea, bloating and a feeling of fullness since the end of June. After several bouts of pale colored stool accompanied by some excruciatingly sharp pains that last a couple of hours at a time, I went to my GP who ordered a CT. The radiologist who performed the CT dated 8/1/2012 stated that the test showed an enlarged pancreatic head with mass effect on the duodenum, then suggested additional testing. I was referred to a gastroenterologist who ordered blood work, MRI and EUS. I don't know the results of the MRI but blood work was normal. After my EUS dated 9/14/2012 the doctor told my husband and I quote "We did a million dollar work up and we found nothing. I don't think she is crazy but she needs to schedule a follow up." Then the discharge nurse hands my husband a print out with images from the EUS which clearly shows a Cyst measured at 3cm x .52cm?!? Is that considered nothing? I understand that is considered a small cyst but given all the pain I have been experiencing as well as other symptoms? To the best of my knowledge no FNA was performed. According to my doctor, I could not have been having attacks of pancreatitis; so I have wonder where the cyst came from? The pain is wearing me down but the stress from not knowing what is wrong with me is agony. On the scale I've lost about 5-7 lbs but I keep receiving comments on how puny I look. I scheduled the follow up but that isn't for another 5 weeks. Any suggestions in the meantime?
It is now two weeks after the EUS. Has the GI doc not seen you back to go over the results? A 3 by .52 cyst would be a little bizarre. If nothing was discussed how do you know this was actually a cyst and not a view of the common bile duct? It is hard to imagine seeing a cyst by EUS in a symptomatic patient and not doing an FNA. You need better info from the study. You paid him, contact him and give him the opportunity to do the right thing.
Thank you for your response. The imaging print out handed to my husband by the discharge nurse had 5 slides on it. One slide was clearly marked CYST with the measurements in a dialogue box. The other 4 slides show the splenic vein, common bile duct, pancreatic duct (all with measurements) as well as a few other "initials" but I'm not sure what they represent. The reason I said "to the best of my knowledge no FNA was performed" is because it was never mentioned to me that it was performed, I didn't receive any antibiotics during the exam in my IV nor after the exam orally. Plus, my doctor told my husband that he didn't find anything. He said everything was normal and healthy. This is why I am so perplexed. I have been told by my GI's staff that he cannot see me until the 22nd because they are extremely busy. So, I sit and wait. My employer approached me yesterday and has called his internist to see if he can see me and possibly refer me elsewhere. Evidently, the toll this is taking on me is more noticeable than I thought.
That is a very good question. I have not inquired that of my primary care physician but I certainly will. I have an appointment schedule with my pcp on the 16th. I did call the endoscopy center of the hospital where the EUS was performed to request a copy of the images and the person on the other end of the phone reacted as though I asked her for a detailed map to the lost city of Atlantis! I was told that she would have to look in the computer to see if the images were even there and call me back but of course my phone never did ring.
Again, thank you for your time and response. I will take your suggestion to my PCP.
The treatment (or non-treatment ) you're getting is outrageous. Go somewhere else after going in person & demanding copies of all tests. The pancreas is a serious organ not to be ignored just because they have no definitive answer for you. It's your health & your life. Please seek another opinion. Do not let anyone put you off when it comes to your health.
Thank you for your response as well. I typically wait my turn and work with in the system without making waves because I don't want to seem impolite, but in this instance my patience is wearing thin. I feel as though my local medical community is failing me. It's such a shame because I am a life and health insurance broker; I am always preaching about wellness and the importance of preventive check ups / early detection.... I now see why people get frustrated and give up. I, however, refuse to quit! I am far too young to feel like this everyday.
This physician did an invasive procedure on you. I can't even fathom not communicating the findings to the patient in a timely fashion. Anyone with the expertise to perform an endoscopic ultrasound examination would not be merely performing the test. He would be consulted for an opinion on evaluation and management. This guy has failed to perform the basic requirements to earn both the fee and your respect. Be certain that the physician that sent you to him knows how you have been treated, it's the most efficient way to weed out the weak hitters.
UPDATE: I got a copy of the procedure report dictated by my doctor from the hospital and it states all is normal and healthy. There is no mention of a cyst nor microlithiasis which are both marked on the images provided to me at discharge. I called my doctor's office to question the discrepancy between the report and the images; evidently my doctor will be out until the 15th. i asked his nurse about the cyst and she told me that I do not have a cyst. I told her that somebody who had a EUS performed on 9/14/2012 did because I have a picture of it. She said she would look into it and get back to me.
Please let me be clear, I do not want something to be seriously wrong with me... I would just like an answer as to why I feel the way I do!
Now there's a confidence builder in the medical system.....
There are other reasons for an enlarged pancreatic head associated with upper abdominal pain. Pancreas divisum is a congenital anomaly where the two portions of the pancreas don't fuse together properly. This gives the appearance of an enlarged pancreatic head and can be associated with pain because the larger portion of the pancreas is forced to drain through the smaller duct. The other possibility is that the pancreas has nothing to do with your symptoms and something else, such as your gallbladder, is the real culprit.
The images have my name on the top of each slide; I'm certain that they are mine. Maybe whatever it that is measured is mislabled? Everything else is marked with initials. The questionable slide show CYST (w/ measurement in a dialogue box), GB, and MICROLITHASIS. In the procedural report, there is something about the pancreatic duct being slightly hyperechoic but the gallbladder is just fine. I originally went to the doctor thinking my gallbladder was heading south since many people in my family have had their gallbladders removed.
I honestly don't care what it is so long as I can be fixed. I have been making modifications to my diet in hopes that it will ease my symptoms. No luck so far. If it weren't for all the symptoms, I'd say this was comical... I've been trying to keep my mind occupied with other things but that ever present deep pain is a constant reminder.
12 more days.... The past four days have been miserable. I have been in constant pain and my abdomen is bloated, hard and tender to the touch. At times even breathing is a chore. I really don't know how much more of this I can handle. 12 more days until my follow up and maybe I'll have a game plan. Ughhhh!
With all do respect, NOW after over 18yrs of pain I was diagnosed with a 'Pancreas Divism'. I was diagnosed with 'chronic pancreatitis in 2004. But had episodes for many previous years of what I now understand was and is acute 'attacks' of pancreatitis. EVERY time I go to the ER I'm told my bloodwork is fine-BUT-I was a nurse and ALWAYS ask to see my blood work results and found through research what to look for. Believe me its a different story when you can point the finger back and tell them their not looking at the correct enzymes
My pain is 24/7upper r/ab front to back and still with acute attacks. Oh yeah' and youll be labeled a drug seeker for there incompetence. Ide love to sue my original doctor,but he's passed on. Pancreatitis'chronic' is hard to diagnose,highly individualized in treatment, and deadly...But if you have it press on and be pushy on what YOU WANT DONE. Your the one who has to deal with it...Take care and good luck
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