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Facial swelling

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    Facial swelling

    Hi everyone
    i haven’t posted in such a long time. I hope you are all as well as can be expected. Mum has now got an issue that her head is to the side and forward and it is causing swelling especially to her lips. She struggles to breathe through her mouth (long story) so has to breathe through her nose but the swelling can be so bad that it blocks her airways. We tried increasing water tablets but that didn’t help and she can’t tolerate a collar to try and straighten her head and neck. Has anyone got any experience of this and any ideas for solutions please? Thank you

    Oh Helen, that must be quite distressing for you all.

    Tbh, I haven't heard of lips swelling before (apart from when we bite them) I wonder if a nerve is being impinged from her head being to one side for so long - it's always best to get her GP to check it out, especially as it interferes with her breathing.

    If your mum is in a wheelchair, there are straps you can get which attach to a wheelchair's headrest and hold the head up - has her OT seen her lately because there are lots of collar types available.

    And is she still using NIV for a bit during the day?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.