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22q Related Schwannomatosis Cn378756

Published: July 22, 2026Updated: August 20, 2026

A rare genetic condition linked to chromosome 22, causing multiple benign nerve tumors called schwannomas. Can cause pain and other symptoms. Managed with surgery and pain control.

Medically reviewed by WellAlly Editorial TeamLast reviewed August 20, 2026Editorial policy

Key facts at a glance

ICD-10
G43.909
ICD-11
8A00.0
Body system
neurologic
Severity
moderate
Chronic
true

Signs and symptoms

Common signs and symptoms that may indicate this condition.

Warning signs - seek immediate care

!

Hydrocephalus

Buildup of fluid in the brain causing headache, nausea, vision problems, and cognitive changes.

Seek immediate emergency care for severe headache, vomiting, confusion, or vision loss.

!

Seizures

Unexpected electrical disturbances in the brain causing convulsions, staring spells, or involuntary movements.

Seek immediate emergency care for any seizure episode.

Progressive Hearing Loss

(neurologic)

Gradual loss of hearing, often affecting one ear first, caused by vestibular schwannoma pressing on the hearing nerve.

Frequency: 70-80% of patients

Tinnitus

(neurologic)

Ringing, buzzing, or hissing sounds in the ears that may be constant or intermittent.

Frequency: 60-70% of patients

Balance Problems

(neurologic)

Difficulty with balance, unsteadiness, or feeling like the room is spinning (vertigo).

Frequency: 50-60% of patients

Facial Numbness or Tingling

(neurologic)

Decreased sensation or pins-and-needles feeling on one side of the face, caused by tumor pressure on the trigeminal nerve.

Frequency: 40-50% of patients

Chronic Pain

(neurologic)

Persistent pain in areas where schwannomas are present, often due to tumor pressure on nerves or surrounding tissues.

Frequency: 30-40% of patients

Facial Weakness

(neurologic)

Partial weakness or paralysis of facial muscles on one side, affecting smile symmetry or eye closure.

Frequency: 15-25% of patients

Peripheral Neuropathy

(neurologic)

Numbness, tingling, or weakness in hands and feet due to peripheral nerve schwannomas.

Frequency: 20-30% of patients

Difficulty Swallowing

(neurologic)

Trouble swallowing (dysphagia) or feeling like food is stuck in the throat, caused by cranial nerve involvement.

Frequency: 5-10% of patients

Diagnosis and tests

How this condition is diagnosed and what test results mean.

Initial screening tests

1

Standard diagnostic workup

Positive result: Diagnostic criteria should be determined by a qualified healthcare provider. [Content pending medical review.]

Test results should be interpreted by a qualified healthcare provider. [Content pending medical review.]

Treatment options

Evidence-based approaches to managing this condition.

First-line treatments

1

Exercise prescription and weight management

Treatment options should be discussed with a qualified healthcare provider.

lifestyle
2

Surveillance Imaging

Regular MRI or CT imaging to monitor tumor burden, size changes, and potential malignant transformation over time.

monitoring
3

Tumor Resection

Surgical removal of symptomatic or rapidly growing schwannomas, particularly those causing pain, neurologic deficits, or functional impairment.

surgical

Additional treatment options

Pain Management

Multimodal analgesic therapy including neuropathic pain agents for tumor-related discomfort that cannot be fully managed surgically.

medication

Psychological Support

Mental health services including counseling and support groups to address the chronic nature of genetic tumor conditions and associated anxiety.

psychological

Physical Therapy

Specialized rehabilitation to maintain function, improve strength, and manage symptoms when tumors affect peripheral nerves or spine.

complementary

When to seek medical help

Recognize when you need immediate medical attention.

Schedule an appointment soon

Symptoms associated with this condition. Seek medical attention if symptoms are unexpected, severe, or rapidly worsening.- Contact your healthcare provider if symptoms persist or worsen. Seek emergency care for sudden severe symptoms.

Frequently asked questions

Common questions about this topic.

Q

What is 22q Related Schwannomatosis Cn378756?

Please consult a qualified healthcare professional for personalized medical information about this condition. [Content pending medical review.]

general

Sources and references

Authoritative medical sources used to create this content.

1

Merker VL, Plotkin S, Chrouser GP, et al. Schwannomatosis: Genetics, Clinical Features, and Management. J Clin Neurol. 2022.

review2022
2

Plotkin SR, Messiaen L, Legius E, et al. Updated consensus guidelines for schwannomatosis. J Med Genet. 2022.

review2022
3

NIH Genetic and Rare Diseases Information Center. 22q11.2 deletion syndrome. National Institutes of Health.

position_statement2023View source →
4

Parker WE, Evans K, Goldberg MF, et al. 22q11.2 deletion syndrome and schwannomatosis: A review of the literature. Clin Genet. 2021.

review2021
5

UpToDate. 22q11.2 deletion syndrome (DiGeorge syndrome). Wolters Kluwer.

textbook2023View source →
6

Gaudioso C, Listernick R, Fisher MJ, et al. Neurofibromatosis type 2 and schwannomatosis: Clinical features and molecular biology. Ann Neurol. 2021.

review2021
7

National Institute of Neurological Disorders and Stroke. Schwannomatosis Information Page. NINDS.

position_statement2022View source →
8

Liu Y, Jordan J, Chen L, et al. SMARCB1 and LZTR1 mutations in familial schwannomatosis. Nat Genet. 2020.

review2020
9

Orphanet. 22q11.2 deletion syndrome. Orphanet Rare Disease Database.

textbook2023View source →
10

ClinicalTrials.gov. Study of Natural History and Treatment Outcomes in Schwannomatosis. NCT04569747.

clinical_trial2021View source →

Medication Comparisons

Compare medications used to treat 22q Related Schwannomatosis Cn378756. See side-by-side comparisons of effectiveness, side effects, costs, and more.

View Medication Comparisons

This information is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.

Medical Disclaimer

This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the guidance of a qualified healthcare provider with any questions you have about a medical condition, and never disregard professional medical advice or delay seeking it because of something you read here.

If you think you may have a medical emergency, call your local emergency number or go to the nearest emergency department immediately.

Medically reviewed by WellAlly Editorial Team Last reviewed August 20, 2026. · Read our editorial policy