The VHL Clinic brings together a group of expert clinicians with broad experience in treating von Hippel Lindau (VHL) disease. Doctors trained in urology, neurosurgery, neurology, ophthalmology, endocrinology, pediatrics and medical oncology work together to provide coordinated, expert care. In addition, genetic counselors with in-depth knowledge of VHL provide advice and support to patients and their families.
The clinic treats cerebellar and spinal hemangioblastomas, retinal hemangioblastomas, pancreatic neuroendocrine tumors and cysts, renal cell carcinoma, endolymphatic sac tumors, pheochromocytomas and epididymal cysts.
What to Expect
Most VHL patients will have an initial visit with Dr. Eric Jonasch in the GU Medical Oncology clinic. Medical records will be reviewed, and appropriate testing will be obtained. If necessary, specialist referrals will be made to manage any current or potential medical issues arising from VHL.
One of the cornerstones of good VHL care is proper screening and follow-up testing, which may include:
- Magnetic resonance imaging (MRI) of the brain and spine
- Computed tomography (CT) scans of the abdomen and possibly the chest
- Ophthalmologic (eye) exam
- Testicular ultrasound for men
- Blood tests to assess for pheochromocytomas
- Audiology testing
Many of these tests are done annually, but exact frequency of testing depends very much on the requirements of each individual.
- Patients, complete the online self-referral form to request an appointment.
- Physicians, complete the online physician referral form.
For more information about appointments in the VHL Clinic, call the Genitourinary Center at 713-745-7020, or toll-free 866-363-1322.