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Newly Diagnosed with a Rare Brain or Spine Tumor

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The signs and symptoms of brain and spine tumors vary greatly and depend on the tumor location, size and how fast they grow. Symptoms can be caused by the location of the tumor or from the tumor pressing on brain tissue or the spinal cord and nerves. Brain and spine tumor signs and symptoms also can occur gradually over days or months or they can happen suddenly.


Brain tumor symptoms may include:

  • Morning headache or headache that goes away after vomiting
  • Seizures
  • Vision, hearing, and speech problems
  • Loss of appetite
  • Frequent nausea and vomiting
  • Changes in personality, mood, ability to focus, or behavior
  • Loss of balance and trouble walking
  • Weakness
  • Unusual sleepiness or change in activity level

Ependymoma Survivor and Caregivers’ Journey

Spinal cord tumor symptoms may include:

  • Back pain or pain that spreads from the back towards the arms or legs
  • A change in bowel habits or trouble urinating
  • Weakness or numbness in the arms or legs
  • Trouble walking

You should call your doctor if you have any symptoms that worry you. Your doctor will examine you, ask you questions, and perform a series of tests. The most common test to find out if you have a brain or spine tumor is magnetic resonance imaging (MRI). It takes detailed pictures of all parts of your brain or spine.


If your test results show a tumor, it is important for you to find a doctor specially trained to treat your brain or spine tumor. You also want to find a doctor you can trust and feel comfortable with. The expertise of your doctor will also help you get an accurate diagnosis, so he or she can plan your treatment and coordinate your care with a better chance of success.

To get an accurate diagnosis of your tumor type, you will need a biopsy. A biopsy is a surgical procedure to remove a piece of tumor tissue. The tumor tissue is usually removed during surgery to remove as much of your brain or spine tumor as possible to treat your cancer and relieve symptoms. And it is critical to find a neurosurgeon with extensive experience to perform your surgery. A neuropathologist will examine the tumor tissue to provide a diagnosis of your tumor type.


Your treating doctor or neuro-oncologist will use your diagnosis of your tumor to determine the best course of treatment after surgery. Treatments may include chemotherapy, radiation, targeted therapies or a clinical trial.

Finding out you have a rare brain or spine tumor can be overwhelming and challenging for you and your loved ones. To help you find expert care and make treatment and care decisions, use the resources below. The more you learn about your tumor, the more confident you will feel about making the right decisions.

Guiding Questions

It is important to the success of your treatment to find a doctor that has experience treating your tumor type. And given brain and spine tumors are rare, there are few centers that have doctors with that level of expertise. Use our network of healthcare professionals to find an experienced doctor near you and get a second opinion.

Treatment Resources

Coping and Support Resources

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