Living with Vagus nerve paraganglioma
A rare growth on the vagus nerve in the neck that can cause a painless lump, hoarseness, and trouble swallowing.
Understanding Vagus nerve paraganglioma
It can be benign (not cancer) or malignant (cancer). It tends to grow slowly. The vagus nerve runs through the neck, so signs often involve the neck, voice, and swallowing.
Signs & symptoms
Symptoms vary from person to person. GARD lists these:
- Slow-growing, painless lump in the neck
- Hoarse voice
- Vocal cord paralysis
- Trouble swallowing (dysphagia)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Pheo Para Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Pheo Para Alliance
- 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 Pheo Para Alliance
- 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
GARD doesn't describe a cause for this condition yet.
Also known as: glomus vagale paraganglioma; glomus vagale tumor; glomus vagale tumour; paraganglioma of the vagal body; paraganglioma of the vagus nerve; paraganglioma of vagal body
Patient organizations
- Pheo Para AllianceVagus nerve paraganglioma · United States
You are more than your diagnosis
Perspectives from people navigating life with Vagus nerve paraganglioma.
Explore research for Vagus nerve paraganglioma
Explore actively recruiting Vagus nerve paraganglioma studies with HealthSpark.
Find actively recruiting studies for Vagus nerve paraganglioma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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