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    #31
    Hi Koolsilver.

    Thank you for sharing your experience with us. My husband is having his RIG fitted on Thursday and we are both getting really anxious. I worry about the procedure - he can't communicate very well and I worry he won't be able to tell the doctors if he is in pain or can't breath/swallow too well-. How was your experience? were you allowed to have a relative or carer with you?

    thank you for your reply!

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      #32
      One idea is to have a set of statements ready prepared on cards e.g. I am in pain, I need the loo etc. When I was unexpectedly in hospital recently my husband bought a notebook with thick pages (I think it was for artists) and I wrote a page of sentences about food and drink, another about washing and dressing, another about PEG care etc and then I just needed to point when I needed to explain.

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        #33
        Hi Marinelis;

        Sorry to hear about your husband but welcome to the forum. I done similar to Miranda in that I typed out two pages of well spaced out short sentences. These I could point to to start a conversation.

        The opp is relatively painless and quick. You are monitored so if you have any problems they will pick it up. You could have a short list to take in with you like Small Pain, hurts alot, i'm hot, I need to swallow etc.

        I did not have much trouble in the opp breathing as the RIG is all done from the tummy area. There is a small pipe that is fitted through the nose into the stumoch but that is normally done before hand whilst in the ward. It is not nice having that done but you can be with him and he can sit up.

        I would strongly recommend that someone stays with him for most of the time in hospital if he can't talk as they don't normally have the know-how , time or experience to deal with us.

        Regards Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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          #34
          Hi All

          G60dubber - Adie is beginning to have problems with swallow. We need to look at having a PEG, however his FVC is prob down to about 25% now. We are very nervous obviously as Maria had it done and she passed away a couple of days later, and Kevin had one and passed away 6 weeks later. Feeling very confused and unsure. Any ideas if they will fit one with such a low FVC?

          Thanks

          Kiran

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            #35
            John's FVC was too low for a PEG so he had a POG fitted instead. He had to have a tube inserted in his nose for the op ti inflate his tummy and then a local anesthetic only at the insertion site. Worked a dream and he was in and out of theatre within half an hour. The tube up the nose was the most painful part apparently.

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              #36
              Kiran, are you and adie with sheffield? If so, give Alison, the respiratory expert, a call and ask her advice. Pass our best regards on to Adie. Xx. Much love. Joycie. Xx

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                #37
                Hi Kiran,

                I'm sorry to hear that Adie is not too well presently and please give him my best wishes. Joycie makes a good point about speaking to the team at Sheffield. They may not be available over the weekend.

                Love and best wishes.
                Barry
                I’m going to do this even if it kills me!

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                  #38
                  Hi;

                  I sent Smudge a PM because I didn't know what POG stands for and I thought it might be a Typo. It is not and was a newish opp carried out. Here is most of his reply:-

                  Hi Terry

                  Not a typo, POG stands for Percutaneous Oral Gastrostomy - when John had it fitted a couple of years ago it was a very new way of inserting the feeding tube and was specifically for people who would not cope with PEG or RIG. The doctor who did it was the only one in the country who did them and had recently moved to Bournemouth and John was the first person she did the op on in the area. Sorry if I've confused people,

                  Thanks very much for that Smudge, regards Terry
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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                    #39
                    pog, peg, pig and rig. is it any wonder ppl get confused?

                    Comment


                      #40
                      Hello smudge. I had a PIG In sheffield in January which confused a lot of people too. It is strange how different specialists advocate different procedures. It doesn't matter a jot if the end result works, does it? Hope you both are well. Love Joycie xx

                      Comment


                        #41
                        Kiran,
                        If Adie is using NIV, technically a feeding tube can be placed in a RIG/PIG procedure. Some specialists will use the PEG procedure, but most shy away from doing it on folk with low FVC. There is a tube – MIC*G - which can be done just with a tummy full of air, not requiring an endoscope or, if these are deemed too risky, he can get a Nasal Gastric tube. NG tubes are usually for short term use but have been used successfully in longer term situations.
                        All risks v benefits need to be discussed with his team.

                        Best wishes to you both,
                        Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                          #42
                          Mum definitely had an NG tube for several months. She elected not to have most interventions but was persuaded by nursing staff to try the NG and she managed successfully with it.

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                            #43
                            Hi Ellie;

                            You better tell us what MIC*G stands for and FVC.

                            Many hospitals will only do a PEG and RIG so the others may not be available locally.

                            Thanks, love Terry
                            TB once said that "The forum is still the best source for friendship and information."

                            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                            Comment


                              #44
                              Hi

                              Thank you all for your comments. We are not with Sheffield anymore and haven't been for about 3 years. The journey was too much for Adie and there was nothing new to be told apart form he was getting weaker!

                              Will explore options with gastroenterologist and see where we go from here, but at least we now know about PEGS, POGS AND PIGS lol!

                              Kiran

                              xx

                              Comment


                                #45
                                Did you have the PEG fitted? How did it go? My husband is now in the same position as you when you wrote this post

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