Brain Tumors

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Brain Tumors

Brain tumors, called SEGAs and SENs, affect people with TSC. They are not cancerous, but should be watched by doctors.

SEGAs

Subependymal giant cell astrocytoma (SEGA) is a type of brain tumor that can develop in patients with tuberous sclerosis complex (TSC).

SEGA tumors are benign (not cancerous), but they can be a danger to you as they grow and take up space 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 (which is brain swelling). If hydrocephalus is left untreated, it can be life-threatening.

 

Approximately 80% of People With TSC Have Brain Complications, and Up to 15% Develop SEGA

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The Story of TSC Brain Tumors

Watch a short animated film about SEGAs.

The Story of TSC Brain Tumors

Watch a short animated film about SEGAs.

SENs

SENs (subependymal nodules) are small, noncancerous tumors. They are often detected prenatally or at birth and do not get larger. They are different from SEGAs, which are larger tumors.

Signs & Symptoms

SENs do not cause symptoms and stay small in size. SEGAs usually develop during childhood or teenage years and rarely develop in adulthood. But, sometimes, a SEGA is not diagnosed until the tumor has caused symptoms. So, keeping track of any changes in your body is important.

  • Headaches
  • Problems with eyesight (vision)
  • Seizures
  • Emotional and behavioral problems

 

Turn to us for support.

TSC is a lifelong disease that can seem complicated. But you are not alone. The more you learn, the better you can manage your health.

Manage Your Symptoms

Neurologist or neurosurgeon

A neurologist performs tests to see if you have any nervous system issues related to TSC. The tests will see if there are any brain tumors and if there is increased pressure in the brain. It is important to talk with a neurologist who knows a lot about TSC. Even though it can be overwhelming to make plans to see a neurologist, it is important for you to go so you can get the best care for your disease.

Sometimes, a neurosurgeon will perform brain surgery to remove the brain tumor. 

An MRI or CT scan

Magnetic resonance imaging (MRI) identifies SEGAs. An MRI uses a magnetic field and radio waves to make pictures of the organs and tissues within your body.

A computed tomography (CT) scan identifies SENs and detects SEGAs. A CT scan (also called a CAT scan) uses x-rays to make pictures of the cross sections of the organs and tissues within your body.

The latest expert guidelines on TSC say:

  • Are you younger than 25 years old?
    Have an MRI of the brain every 1 to 3 years to check for new SEGAs.
  • Do you have large or growing SEGAs?
    Get MRI scans more often.
  • Do you have a SEGA that didn’t cause symptoms in childhood?
    Keep getting MRIs as an adult to make sure there is no growth.
  • Do you have seizures or think you do?
    Have routine scans of the brain called electroencephalographs (EEGs).

Your doctors should screen for features of TSC-associated neuropsychiatric disorders (TAND) at least once a year at your regular doctor visit.

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