Originally posted by Rosemary6NT
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I was given a depressing probably impossible choice for a cataract operation, either one in 4-6 weeks if I can lie flat or nearly flat for 20 minutes, or get put on a long indeterminate waiting list for an op with general anaesthetic. I had thought I could just use my Bipap with undernose mask, but apparently this doesn't allow enough access round the eye. Tried lying flat for 20 minutes telling myself I could do it, and I was just imagining I was breathless, but needless to say I didn't get very far. I asked about if it was okay to take oramorph, but they weren't keen as they said I had to be alert and follow instructions. Can't bear the thought of losing sight on top of everything else! Warning to those developing cataracts, get them done sooner rather than later! xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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Gosh Heather, that's an awful situation to be in.
Originally posted by Heather R View PostI had thought I could just use my Bipap with undernose mask, but apparently this doesn't allow enough access round the eye.
I need to say that you must be very careful about having a general anaesthetic with poor respiratory function - take advice from the Consultant Anaesthetist prior to putting yourself on the waiting list.
Is it the same hospital you attend for your MND Clinic appointments? xx
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Ellie not the same hospital. I was presuming general anaesthetic would not be viable , especially in the future. I will ask about different masks thanks for suggestions. The hospice nurse has advised 1 ml oramorph when I feel I need it, and I think I am pretty alert still. Tomorrow I will test lying flat with oramorph xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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Originally posted by Heather R View PostThe hospice nurse has advised 1 ml oramorph when I feel I need it, and I think I am pretty alert still.
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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