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How is Von Hippel-Lindau Disease diagnosed?
See how Von Hippel-Lindau Disease is diagnosed. Which specialists are essential to meet, what tests are needed and other useful information for the diagnosis of Von Hippel-Lindau Disease
Cat scans of brain and kidneys, eye exams
Family tree tracing
Family tree tracing
Posted May 16, 2017 by Paul 1100
Through blood work it was diagnosed. My genetics doctor helped me get my children checked for this. An oncologist , neurologist and genitourinary doctor are essential. MRI's and cat scans are needed once diagnosed
Posted May 17, 2017 by Terry 600
In my case, there was no family history of VHL. Two gastroenterologists were responsible for getting me genetically tested, because my initial symptoms were gastrointestinal. If there is a family history of VHL, obviously genetic testing would be the first course of action. A neurosurgeon, urologist, retinal oncologist, ENT and general practitioner are absolute necessities. If pancreatic changes are noted, a surgical oncologist is necessary. I don't believe an oncologist is necessary as long as all care is being coordinated by a member of the health care team.
Posted May 17, 2017 by Bobbi 1000
Von Hippel Lindau is diagnosed by a genetic test specifically looking for VHL. This test, usually taken via blood sample, is typically taken when a patient shows two or more signs of VHL or has a family member diagnosed with VHL. Depending on the symptoms, doctor needs can vary. For a child, a pediatrician, pediatric oncologist, pediatric Gastroenterologist, and pediatric ophthalmologist usually team to form a treatment plan, with adults, similar doctors are needed. Upon diagnosis, brain and abdominal MRI's, angiocardiograms of suspected tumors, hearing, vision, and basic neural tests are usually done to assess tumor growth.
Posted Aug 24, 2018 by Ellie 500
