Living with Myxopapillary ependymoma
A slow-growing tumor of the supportive tissue of the lower spinal column, usually considered low-grade.
Understanding Myxopapillary ependymoma
It is a type of ependymoma, which is a glioma. These tumors are usually considered benign, low-grade (grade I) tumors. Symptoms depend on where the tumor is and how large it is. They tend to come back locally, more commonly in people diagnosed as children. It can happen at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Headache
- Neck pain
- Nausea and vomiting
- Bladder problems
- Bowel problems
- Unsteady walk
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and cancer specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Children's Tumor Foundation, Alex's Lemonade Stand Foundation and Collaborative Ependymoma Research Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists)
- Expert care
- Expert lists: Children's Tumor Foundation, Alex's Lemonade Stand Foundation, Collaborative Ependymoma Research Network
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Children's Tumor Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
The cause of ependymomas is unknown.
Also known as: ependymoma, benign; myxopapillary ependymoma (morphologic abnormality)
Patient organizations
- Children's Tumor FoundationMyxopapillary ependymoma · United States
- Alex's Lemonade Stand FoundationMyxopapillary ependymoma · United States
- Collaborative Ependymoma Research NetworkMyxopapillary ependymoma · United States
- Children's Brain Tumor FoundationMyxopapillary ependymoma · United States
- National Brain Tumor SocietyMyxopapillary ependymoma · United States
- Pediatric Brain Tumor FoundationMyxopapillary ependymoma · United States
You are more than your diagnosis
Perspectives from people navigating life with Myxopapillary ependymoma.
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