Symptoms of Hemangioblastoma

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Hemangioblastomas are rare, noncancerous tumors that typically form in the brain, spinal cord, or retina of the eye. Although hemangioblastomas are benign (not harmful) and grow slowly, they can sometimes become large enough to press on structures in the central nervous system (the brain and spinal cord).

This pressure can cause neurological symptoms, such as headaches, weakness, sensory loss, balance and coordination problems, and hydrocephalus (buildup of spinal fluid in the brain).

The cause of hemangioblastomas is a mystery, although some people may develop them as part of a genetic syndrome called Von Hippel-Lindau disease (VHL). VHL is characterized by the growth of a variety of benign and malignant tumors.

This article will discuss common symptoms of hemangioblastomas to watch out for, potential complications, and when to see a doctor for a diagnosis and treatment.

Woman holding her head

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Frequent Symptoms

Most people with hemangioblastomas will develop symptoms, but this is not always the case. Symptoms vary from person to person and some people have few or no symptoms at all. Your symptoms will depend on the location and size of the tumor. Some common symptoms include:

  • Headache
  • Nausea or vomiting
  • Dizziness or vertigo 
  • Balance and coordination issues, or ataxia
  • Blurry vision or vision loss if the tumor affects the retina

Rarer Symptoms

As hemangioblastomas grow, the tumors can press against structures of the central nervous system and cause neurological symptoms. These symptoms might include the following:

  • Lower extremity weakness, or weakness in the legs
  • Upper limb weakness, or weakness in the arms
  • Neurogenic bladder, or a lack of bladder control due to a nervous system injury

Potential Complications 

Sporadic hemangioblastoma tumors usually appear in people who are in their 50s or 60s, whereas VHL-associated tumors are often detected earlier, when people are in their 30s or 40s. The presence of a hemangioblastoma may suggest an underlying genetic abnormality. If one is detected, it is likely that you will undergo genetic testing for VHL and surveillance (closely watching) of your tumor. 

Large hemangioblastomas that are left untreated can cause damage to the nerves of the brain, and even vision loss. Eventually, untreated hemangioblastomas can lead to complications, like a buildup of fluid in the brain.

In fact, experts estimate hydrocephalus develops in 5%–29% of patients. Hydrocephalus may cause altered mental status in about 10% of these cases.

Regular checkups with your doctor are important to monitor the growth, size, and appearance of these benign tumors. 

When to See a Healthcare Professional

Hemangioblastomas can cause significant neurological symptoms and irreversible damage if they are not addressed in a timely fashion. Some people learn to live with some changes to their neurological function, but you should check in with a healthcare professional if you experience even mild changes in your symptoms. Any change may indicate new or recurrent tumor growth.

If you are having new difficulties with balance and coordination, weakness in your legs, changes in your vision, loss of bowel or bladder control, or loss of your sensory abilities, seek immediate medical attention.

A Word From Verywell

Hemangioblastomas are usually slow growing, but based on their typical location, which usually is near a large blood supply, these vascular tumors can grow quickly. If you are diagnosed with a hemangioblastoma, check in with your doctor regularly. Monitoring your symptoms and getting treatment, like surgery or radiation, are also important steps to improving your quality of life and improving your overall outlook.

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  1. National Center for Advancing Translational Sciences: Genetic and Rare Diseases Information Center. Hemangioblastoma.

  2. American Brain Tumor Association. Hemangioma