Living with Hemangioblastoma
A non-cancerous, blood-vessel-rich tumor that can grow in the brain, spinal cord, or retina.
Understanding Hemangioblastoma
These tumors make up about 2% of brain tumors. As one grows, it can press on the brain and cause symptoms. Most occur on their own, but some people have them as part of von Hippel-Lindau syndrome, and these people usually develop several tumors in the brain and spinal cord over time. It usually appears in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Dizzy spells (vertigo)
- Weakness in the arms or legs
- Nausea and vomiting
- Loss of bladder control from nerve injury
- Fluid buildup in the brain (hydrocephalus)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
VHL Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: VHL Alliance
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with VHL Alliance and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says most hemangioblastomas occur sporadically, meaning without a known cause. Some people develop them as part of a genetic condition called von Hippel-Lindau syndrome.
Also known as: angioblastoma; capillary hemangioblastoma; haemangioblastoma
Patient organizations
- VHL AllianceHemangioblastoma · United States
- National Brain Tumor SocietyHemangioblastoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Hemangioblastoma.
Explore research for Hemangioblastoma
Explore actively recruiting Hemangioblastoma studies with HealthSpark.
Find actively recruiting studies for Hemangioblastoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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