You Spoke…We Listened

You Spoke:

“What can be done in continuing education is to inform doctors, to alert them to the warning signs… I had been visiting my primary care physician for years to talk about back pain.”

“I would appreciate information on pain management options.”

“Don’t give in to the pain. The battle has just begun” ~ AEO Project Participants

We Listened:

Pain is a common symptom prior to and after diagnosis of an ependymoma. People with tumors in the brain may experience headache pain, whereas those with spine tumors may experience pain along the spine or radiating into the arms, legs, or buttocks. As part of the Adult Ependymoma Outcomes (AEO) survey, we asked people with ependymoma to tell us about their pain.

One question we asked was whether the person complained of pain at the first surgery. Over 50% of those with brain tumors had headache, and over 49% with spine tumors had back pain.

We also asked if pain occurred when the tumor recurred, and ¼ of those with brain tumors had pain, but the majority (83%) of those with spine tumors had pain.

Over 30% of patients were currently taking pain medication on a daily basis. We asked participants in the Ependymoma Outcomes Project to report the severity (on a scale of 0 or “not present” to 10 “as severe as one can imagine”).

19% of those with brain tumors and over half of those with an ependymoma of the spine reported moderate to severe pain in the last day.

If you have pain, here are some helpful hints to help manage it. Be sure to discuss any symptoms you have with your health care provider. Do not suffer in silence!

Ways To Manage Pain

  • Communication - Only you know what your pain feels like. Good communication with your treating doctor is key. Be sure to share with your health care team the following information: what the pain feels like; what makes it worse; what makes it better; if your current pain medication provides relief and for how long; and how the pain affects your life.
  • Pain recurs - Consider keeping a pain record that you can bring to the doctor to share the pattern of your pain.
  • Treatment options - Ask what medicine is available to help with the pain; when to take the medicine and for how long; and what to do if it doesn’t help.
  • Other treatment options - Other treatments are also available and may provide relief. Some examples are relaxation, biofeedback, acupuncture, physical therapy, and counseling.

Talk to your health care provider about the use of these techniques and how to access them in your area.

Below are some additional websites that provide more detailed information on managing pain:

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