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Thread: Advice please

  1. #11
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Hi Ellie

    Quote Originally Posted by Ellie View Post
    Having a feeding tube procedure * is not * done under a general anaesthetic, but under light sedation. For those having a RIG procedure, some people don't even need sedation as there is no endoscope to swallow, unlike the PEG & PRG/PIG procedures.Love Ellie.
    Happy to be corrected so perhaps the advice I got about getting it done sooner rather than later is a little over the top?




    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  2. #12
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Andy, you're a slow progressor, so the sooner rather than later advice isn's as relevant to you. Bulbar onset ALS and "typical" ALS are different - and yes, I know I used the word "typical"

    Certainly at first signs of a weakening swallow (which can be very subtle), respiratory decline, weight loss or appetite apathy, alarm bells should sound for feeding tube insertion IF that is what you want.

    The aim is to get a feeding tube BEFORE weight loss, BEFORE aspiration pneumonia due to poor swallow, BEFORE respiratory function declines too much making the procedure riskier, in general BEFORE the body's reserves are compromised too much which makes recovery much easier and quicker.

    Of course people can have the feeding tube procedure after the above events - it just takes more time to recover and to get back to where they ought to be, especially with sustained weight loss.

    I guess the trick is to know your body and recognise very early symptoms - not always easy when changes can be so subtle as to insidiously creep up on you

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #13
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Good afternoon Andy,

    Further to Ellie's very informative post, you might also find the following 'Guide to PEG/RIG' useful:-

    Best wishes

  4. #14
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    (Although some of the information in the NHS Guide is specifically for MND patients within the Oxford Hospitals Trust, it also contains a lot of general information/advice about PEGs and RIGs for MND patients).
    Last edited by Kayleigh; 29th March 2019 at 12:35.

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