TSC-RELATED BRAIN SYMPTOMS

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SUBEPENDYMAL GIANT CELL ASTROCYTOMA (SEGA)

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Subependymal giant cell astrocytoma (SEGA) is a type of brain tumor that can develop in tuberous sclerosis complex (TSC). SEGA tumors are not cancerous, but they may still be a danger to you as they grow and take up room in your brain.

SEGA tumors most often form in the middle of the brain, in a part called the Foramen of Monro. Here they may block the flow of fluid between the brain and spinal column. This blockage can increase the pressure in the brain, leading to a condition called hydrocephalus. If hydrocephalus is left untreated, it can be life threatening.

SEGAs are different from subependymal nodules (SENs). SENs are small, noncancerous tumors. It is thought that in some people, a SEN may grow large enough to become a SEGA. This depends on how large the tumor grows, as well as on specific other conditions being present.

Approximately 80% of people with TSC have brain complications, and up to 15% develop SEGA

Signs & Symptoms

  • Headaches
  • Vision problems
  • Increased seizure frequency
  • Emotional and behavioral problems

Stay Alert

SEGAs usually develop during childhood or adolescence, and rarely occur in adulthood. Sometimes, SEGAs are not diagnosed until the tumor has caused symptoms. So keeping track of any changes in your body is important.

Here's What You Can Do

  • Schedule regular brain scans as recommended by your doctor
  • Get regular vision tests and ask your doctor about the brain features you may have
  • Note any headaches or seizures to see if there is a pattern and share this information with your doctor
  • Tell your doctor right away if you experience any changes in your symptoms or have any new symptoms
  • Download the TSC Central mobile app for monitoring TSC. You can track appointments, symptoms, test results, and more

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