What it is
It is not related to neurofibromatosis type 1, despite the similar name.
Regular scans and hearing tests are needed. Tumours may be monitored, removed with surgery, treated with radiotherapy or with medicines that slow growth.
Common signs
- Hearing loss
- Tinnitus
- Balance problems
- Lumps on or under the skin
- Vision problems such as cataracts at a young age
How it is usually diagnosed
- MRI scans of the brain and spine
- Hearing tests
- Eye examination
- Genetic testing
Records worth keeping
Keeping these together makes each appointment easier, especially when you see a new doctor:
- MRI reports over time
- Audiograms
- Specialist NF2 centre letters
- Genetic test results
Questions to ask your doctor
- How quickly are the tumours growing?
- What can be done to protect my hearing?
- Should my family be tested?
When to get help right away
Call 112 or go to the nearest emergency department if you have:
- Sudden severe headache, sudden weakness, or difficulty swallowing or breathing: call 112
This page is general information. It is not a diagnosis and does not replace a doctor who knows your history. Medfold keeps your records organised; it does not interpret them.