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Warning-sign checks

Bilateral acoustic neurofibromatosis: when to get help

Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.

  1. 1

    Is any of this happening now?

    Call 911

    Seek emergency care for a seizure lasting several minutes, loss of consciousness, sudden severe weakness, inability to walk, severe breathing or swallowing difficulty, or a sudden intense headache with repeated vomiting or confusion.

    And for anyone, someone who:

    • has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
    Other emergency signs, for anyone
    • Someone who is struggling to breathe, gasping, choking, or cannot get words out
    • Someone who has chest pain, tightness or pressure lasting more than a few minutes
    • Someone who is unconscious, or cannot be woken
    • Someone who is bleeding heavily and it will not stop with firm pressure
    • Someone who has had a seizure that will not stop, or does not wake up afterwards
    • Someone who has lips or skin that look pale, blue, grey or blotchy
    • Someone who you believe has taken an overdose or swallowed something poisonous
  2. 2

    Is any of this happening?

    Be seen today

    Contact the care team promptly for a noticeable change in hearing, new facial weakness or numbness, worsening balance, persistent vomiting, new weakness, increasing pain, vision changes, or new bladder or bowel problems.

    Sudden hearing loss should receive urgent medical assessment because prompt evaluation may identify causes other than tumor growth that are time-sensitive.

    And for anyone, someone who:

    • has a new severe headache unlike any they have had before
  3. 3

    Does any of this apply?

    Book an appointment

    Long-term follow-up is essential because new tumors can appear and existing tumors can change.

    The schedule should be individualized according to age, symptoms, previous treatment, tumor burden, and genetic findings.

    Routine follow-up may include neurological examinations, hearing and speech-understanding tests, brain MRI, spinal imaging, eye examinations, and review of balance, pain, mobility, communication, and daily function.

    People receiving medicine or recovering from surgery may need additional testing.

The article also says

Genetic counseling can help relatives understand whether testing is appropriate.

It can also explain reproductive options without directing a person toward any particular choice.

Psychological support, hearing-loss services, school or workplace accommodations, and patient support organizations may be useful parts of ongoing care.

Every sign above is quoted from the sofidex article on Bilateral acoustic neurofibromatosis. If you are not sure, err upward — it is always reasonable to be checked.