In July 2010 I suddenly started having intense pressure in my upper left abdomen that went from the front through to my back. It feels like something is inside pushing outwardly very hard. I would start feeling like my legs were very heavy almost like a very heavy person was riding piggyback on me. I began noticing it would only happen about 1/2 to 1 hour after eating and would last about 6 to 8 hours. I wake up feeling fine until about 1 hour after I eat. I went to the ER and they said it wasn't heart related and was probably stomach acid. After 6 months of different doctors and different tests they found a Neuro-endocrine carcinoid tumor (NET). I was referred to a NET specialist surgeon. He did some more tests (HIAA blood and urine tests, and an Octreoscan and said a CT scan I had earlier was very poor quality although, he could barely see the NET on it knowing where it was from the colonoscopy. The new CT scan showed it clearly and the Octreoscan showed the NET as being the only one in me as of Jan 2011. He plans on doing a hemicolectomy along with taking out the 2 inches of small intestine that has the NET. My Colon is fine, but he says to reestablish good blood flow they have to reconnect it to the transverse colon, and therefore have to remove the ascending and part of the transverse colon. Surgery has been postponed 6 weeks now because I have a cold and they can't do surgery til I'm totally over it.
No one can say for sure that the NET is what is causing my symptoms, which are in the upper left part of my abdomen (the NET is in the lower right part of my abdomen) The surgeon says he thinks the symptoms will go away when the NET is removed. Most of the other doctors say it probably isn't related.
Is there anyone else who has had symptoms like mine who have a Neuroendocrine carcinoid tumor? The tumor is on my ileocecal valve. It's only 1 to 2 cm's. Starting about 1/2 to 1 hour after I eat I start feeling pressure in my abdomen just below my left rib cage extending to about 2 inches above my rib cage and pressing through to my back on the left side. At the same time my legs start feeling really heavy like I have really heavy leg weights on IAlso have the same sense of heaviness on my mid to lower spine. I literally feels like a very heavy person is riding me piggyback. This starts about 1 hour after I eat and lasts up to 8 hours. It gets better if I lie down and I usually feel normal in the AM when I wake up. If I don't eat I'm okay. I can drink soda or juice and I'm okay. If I eat or even drink almost anything else the symptoms start about 1/2 to 1 hour later. I can make it to about 4 or 5 PM most days without eating and then I have to eat from being so weak. Sometimes after 3 PM or later of doing hard work the symptoms start anyway even if I don't eat. But usually if I avoid eating I feel okay, just weak from hunger. I don't have diarrhea or any of the other typical NET symptoms.
What I want to know is if anyone else with a NET on their ileocecal valve or thereabouts has similar symptoms. And did they go away just by having the tumor removed?