Hemangioblastoma: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Hemangioblastoma?
A neurosurgeon, a doctor who operates on the brain and spine, usually treats hemangioblastoma. A geneticist, a doctor who studies inherited conditions, may also help, because some cases are inherited. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is hemangioblastoma?
Hemangioblastoma is a tumor made of newly formed blood vessels. It can grow in the brain, the spinal cord, or the retina, the light-sensitive layer at the back of the eye. These tumors are typically not cancer.
A hemangioblastoma can be sporadic, which means it is not part of an inherited syndrome. It can also be linked to von Hippel-Lindau syndrome, also called VHL. VHL is an inherited disorder that causes tumors and fluid-filled sacs, called cysts, in many parts of the body.
A sporadic hemangioblastoma is generally a single tumor. The tumors linked to VHL are often in more than one place.
Symptoms
Symptoms depend on where the tumor is, how big it is, and whether it has swelling or a cyst around it. Cysts often cause more symptoms than the tumor itself. A small tumor may cause no symptoms at all.
In the brain or spinal cord, symptoms can include:
- Headaches.
- Vomiting.
- Weakness.
- Balance problems, called ataxia, which means a loss of muscle coordination.
A tumor in the retina can cause:
- Floaters, which are small specks that drift across your vision.
- Vision loss.
- Retinal detachment, when the retina pulls away from the back of the eye.
Causes and who gets it
VHL is caused by changes, called mutations, in the VHL gene. This gene normally keeps cells from growing and dividing too fast. When it does not work, cells grow out of control and form tumors and cysts.
VHL is passed down in an autosomal dominant pattern, which means one changed copy of the gene from a parent is enough to raise the risk. In about 20 percent of cases, the change is new and was not inherited.
How doctors diagnose it
Doctors use an MRI, a scan that uses magnets to make detailed pictures, of the brain and spine to look for hemangioblastomas.
VHL is diagnosed with genetic testing, which looks for a change in the VHL gene.
Without a family history, VHL is found when a person has two or more of these tumors in the brain or spine, or one plus a tumor in another organ. Once VHL is found, doctors begin regular checks early, before symptoms start, because most VHL tumors are much easier to treat when they are small.
Treatment
Surgery to remove the tumor is the main treatment for most people with VHL. Surgery has long been the standard treatment for hemangioblastomas of the cerebellum and spine. If the tumor has a cyst, the cyst collapses once the tumor is removed. If any part of the tumor is left, the cyst fills up again.
People with VHL often need more than one operation over their lifetime. When surgery is not possible, radiation aimed at the tumor, called stereotactic radiosurgery, is another option.
Small tumors at the edge of the retina can be treated with a laser. Larger ones often need cryotherapy, which freezes the tumor. If the tumor is on the optic disc, the spot where the eye nerve leaves the eye, few treatments will save vision.
In 2021, the FDA approved a medicine called belzutifan (Welireg) as the first systemic therapy for VHL, which means a medicine that works throughout the body. It is approved for VHL-related brain and spinal cord hemangioblastomas that do not need surgery right away. Ask your doctor about its risks and side effects.
When to see a doctor
Headaches, vomiting, balance problems, weakness, or vision changes with no clear cause should be checked by a doctor. If VHL runs in your family, ask your doctor about regular checks to find tumors early.
Call 911 or go to the emergency room if you have sudden weakness or dizziness, a sudden change in vision, trouble speaking, fainting, or a sudden change in mental status such as confusion.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Such a doctor can do an evaluation, refer you to a neurosurgeon or a geneticist, and help keep track of follow-up scans and visits.
Common questions
Is hemangioblastoma cancer?
No, hemangioblastoma is typically not cancer. It is a tumor made of blood vessels. Even so, it can cause serious problems.
Does hemangioblastoma always come from von Hippel-Lindau syndrome?
No, a hemangioblastoma can also be sporadic, which means it is not part of an inherited syndrome. A sporadic tumor is generally a single tumor, while tumors linked to VHL are often in more than one place.
How is hemangioblastoma treated?
Surgery to remove the tumor has long been the standard treatment for hemangioblastomas of the cerebellum and spine. If the tumor has a cyst, the cyst collapses once the tumor is removed. People with VHL are watched with regular checks, because they can have more than one tumor.
How do doctors watch for tumors in people with VHL?
Doctors use regular scans and tests to find tumors early in people who have VHL. Most VHL tumors are much easier to treat when they are small.
Sources
- MedlinePlus Genetics - Von Hippel-Lindau syndrome
- National Organization for Rare Disorders - Von Hippel-Lindau Disease
- National Cancer Institute - Von Hippel-Lindau Disease (PDQ)
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
