Living with Schwannomatosis
A condition with multiple non-cancerous nerve tumors, causing long-lasting pain, usually starting in early adulthood.
Understanding Schwannomatosis
Signs usually appear in early adulthood. The most common symptom is chronic pain, mild to severe, which can be hard to manage and can occur where no tumor is known. Other problems depend on the nerves affected, such as numbness, weakness, tingling, and headaches. It is usually considered a form of neurofibromatosis, but it almost never includes inner ear tumors.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Chronic pain
- Multiple nerve tumors (schwannomas)
- Numbness and tingling
- Weakness
- Headaches
- Spinal cord tumor
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, cancer specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in SMARCB1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Children's Tumor Foundation, Neurofibromatosis Midwest and Neurofibromatosis Network may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Children's Tumor Foundation, Neurofibromatosis Midwest, Neurofibromatosis 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
It is linked to changes in the SMARCB1 gene. It is autosomal dominant, so one changed copy of the gene can be enough.
Also known as: neurinomatosis; neurofibromatosis type 3; nf3
Patient organizations
- Children's Tumor FoundationSchwannomatosis · United States
- Neurofibromatosis MidwestSchwannomatosis · United States
- Neurofibromatosis NetworkSchwannomatosis · United States
- Neurofibromatosis NortheastSchwannomatosis · United States
- NF CollectiveSchwannomatosis · United States
- Littlest Tumor FoundationSchwannomatosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Schwannomatosis.
Explore research for Schwannomatosis
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- Recruiting studies from ClinicalTrials.gov
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