Within the past few months, I have had numerous VIP (Vasoactive Intestinal Polypeptide) blood tests which have all come back extremely positive. I understand that the culprit is a VIPoma, a tumor typically associated with the pancreas or somewhere in the GI/nervous system. I have had numerous tests to try to locate the tumor, including CT Scans, MRI and Endoscopes (with ultrasound) and Octreotide Scans. We are still unable to localize the tumor. As you can image, I am pretty frustrated. Does anyone know any specialists that has had experience with VIPomas that they can refer me to? My GI would be more than happy to consult with them incase we missed anything during these test. As these tumors tend to metasticize, we are deperately trying to locate it....
In response to your frustration on vipoma testing, I have also testing positive for a vipoma and I am about to undergo the octreotide test this week. I was wondering if it was painful and what it felt like. The doc said it is a 3 day test and I am not looking forward to it. Also, I am sorry to hear that the docs can't find your vipoma.
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