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Warning-sign checks

Familial chordoma: 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

    These symptoms may indicate significant pressure on the spinal cord, lower spinal nerves, brainstem, or airway and require emergency assessment.

    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 has sudden weakness or drooping on one side of the face or body, slurred speech, or sudden confusion
    • 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

    Do not wait for your next scan if symptoms are progressing.

    Seek urgent medical care for:

    • New or rapidly worsening weakness in an arm or leg
    • New numbness around the genitals, buttocks, or inner thighs
    • Sudden loss of bladder or bowel control
    • Inability to pass urine with back pain or leg symptoms
    • New severe difficulty swallowing or breathing
  3. 3

    Does any of this apply?

    Book an appointment

    Arrange a routine appointment if you have a family history of chordoma and want genetic counseling.

    Seek assessment for persistent or worsening pain, headaches, double vision, numbness, weakness, swallowing problems, or unexplained bowel or bladder changes.

    If you have been treated for chordoma, contact your specialist team about new symptoms, returning symptoms, or changes between follow-up visits.

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