von Hippel-Lindau Disease Symptoms

Sometimes von Hippel-Lindau disease (VHL) has no symptoms. When it does have signs, they vary from person to person and depend on the location and problems caused by the disease.

Endolymphatic sac tumor symptoms

Symptoms of endolymphatic sac tumors include:

• Hearing loss
• Tinnitus, a persistent ringing in one or both ears
• Balance problems

Hemangioblastoma symptoms

Symptoms of hemangioblastomas vary depending on their location.

Brain stem

• Decreased feeling in the arms, legs and body
• Walking difficulties
• Swallowing difficulties
• Headaches
• Poor coordination

Cerebellum

• Difficulty walking and with muscle coordination
• Dizziness
• Headaches
• Double vision
• Vomiting

Retina

• Vision loss
• Retinal detachment

Spinal cord

• Decreased feeling in the arms, legs and body
• Weakness
• Difficulty walking
• Difficulties with bowel and bladder function

Kidney cancer symptoms

The symptoms of VHL-related kidney cancer match those of other kidney cancers and include blood in the urine and a lump or mass in the back. Learn more about kidney cancer symptoms.

Pancreatic tumor and cyst symptoms

The symptoms of VHL-related pancreatic tumors include jaundice, dark urine and light-colored stools. Learn more about pancreatic cancer symptoms.

Pancreatic cysts can cause pain and block the flow of hormones created by the pancreas to the rest of the body.

Pheochromocytoma symptoms

Pheochromocytomas may cause symptoms that are like what you feel in an emergency (“fight or flight”) situation. These include:

• High blood pressure, either all the time or just sometimes
• Sweating
• Headaches
• Rapid or irregular heartbeats
• Feelings of anxiety, panic and fear
• Pale skin
• Dizziness or lightheadedness when you stand
• Tremors
• Weight loss

As a genetic condition, von Hippel-Lindau disease runs in families. If you have von Hippel-Lindau disease, or if you have a family history of the disease, we recommend genetic counseling. Visit our genetic testing page to learn more.