Lipogranulomatosis lymphadenopathy

Posted by kimber361 @kimber361, Jan 18, 2020

Has anyone been diagnosed with Lipogranulomatosis lymphadenopathy (a rare lyposomal storage disease)? After I underwent a Whipple Procedure surgery to remove a tumor from the head of my pancreas, the surgical pathology report indicates out of the 17 abdominal lymph nodes removed, there were 12 positive for Lipogranulomatosis lymphadenopathy. My second question is, which subspecialty physician would be best to follow for this disease, Hepatology, Hematology, Rheumatology or Functional Medicine?

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Becky, Volunteer Mentor | @becsbuddy | Jan 18, 2020

Welcome to MayoClinicConnect @kimber361 . I’m glad you found us. We’re a varied group of individuals who share our health experiences, give suggestions and support. We’re not medical professionals so we can’t diagnose or prescribe medications. But, we’re all here to help! You said that the lipogranulomatosis lymphadenopathy was noted on the surgical pathology report. What has the surgeon said about it? Have you been able to talk to her/him? The surgeon should know which sub speciality is best to follow your case. Since the lipogranulomatosis was found in the abdomen, I would suggest a gastroenterologist, but first, ask the surgeon. How did you do with the Whipple?

fighter | @fighter | Jan 18, 2020

NOT functional medicine!

kimber361 | @kimber361 | Jan 18, 2020

In reply to @becsbuddy "Welcome to MayoClinicConnect @kimber361 . I’m glad you found us. We’re a varied group of individuals..." + (show)

Hi @becsbuddy. Thank you for your suggestions. I recently spoke to my gastroenterologist & he said this disease is outside of his specialty. He didn't know which sub specialty physician to refer me to. My surgeon never mentioned anything about the disease to me. I was just recently sent a copy of the pathology report & it's how I found out. I'll contact his office next week to see if I can get some sort of referral. He may have just overlooked the report findings.