Hi chaps, question for you. My wife has now had MSA since 2016 so is a fair way into it. She has the usual problems and is now too late for PEG tubes, however, it still might be possible for a RIG set up. She no longer eats much so I make her diet high in calories etc, drinking is sort of ok for now. She doesn’t want the tube fitted! Has anyone had this problem and regretted not having the operation done? Please bare in mine she is at the latter stages, no speak, mobility, uses breathing aids, takes constant pain killers. BUT she is NOT loosing any weight!
I look forward to your comments.
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Oliverwindsor
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Hi Oliver, my friend is in the latter stages too, she's refused any type of tube . She has lost weight, though not so much recently when she's eating less and less. She has a CPAP machine she wears most nights but has started to feel claustrophobic when wearing it.
Thanks for that, funny thing, my wife was exactly the same with her CPAP, had been wearing it for almost 3 years and never missed a night even if we were away, but now just can’t seem to use it. She is 59, just so young for this. They keep on at her to have a tube fitted but my argument is, is it simply going to prolong a life that already has no real reason. Her GP is in the sort of frame of mind that there isn’t really much to gain but SALT team has somehow put it into her mind that she really doesn’t have a choice if she wants to survive!
How difficult for you as you are obviously passionate about keeping your wife comfortable and with you.
I wondered what you thought about why she doesn’t want it. Is it because she is afraid of the procedure or because it will keep her alive fir longer and that is something that she doesn’t want? I am currently quite well so I am putting a living will in place. Having a feeding tube is one of the options that I need to decide on, I am thinking that if I have no speach and that o required breathing assistance and pain killers that I wouldn’t want to carry on longer than necessary but I guess that everyone is different and she may prefer to be with you than not but she will need to be let go at some point and she may feel that this is her opportunity? Is there any way she can communicate with you why she doesn’t want it? Then I feel that hard as it is you need to recognise her wishes and allow her to make decisions about this if she is able to. Not easy I’m sure.
Hello Jane, thank you for your comments. You of course are right, the decision is 100% hers. We do have a lasting PoA over her but can only be used when she can’t. The problem is, at outset she was quite sure that there was no way it would happen. A year ago she had a barium x-ray to prove the situation was bad, however, still here and still no tubes, VERY small appetite with no weight loss. The issue as I see it is not my opinion as I will follow her wishes 100% but the SALT team. Even her gastroenterologist consultant is not biased in any way. The SALT team are relentless and it’s simply not fair on her to be pushed to a decision. I would say drop speach and language therapy but, and the big but is, we need them for her speach which is currently unrecognised so we use an app with her banked voice. Therefore……..I’m stuck!
I'm in a similar situation to you. We reckon first symptoms for my wife started in 2016. She turned 60 this year, but is also at advanced stage if this illness. We had some of the more difficult discussions over the past couple of years, and my wife has also decided against feeding tube. My wife is now fully wheelchair bound, permanent indwelling catheter, CPAP and speech is almost gone. Coming out the other side of aspiration pneumonia which came on suddenly last week. But like your wife not losing weight yet, despite difficulty with eating & swallowing.
We had good talk with hospice doc and she has decided that she will take antibiotics etc but no major interventions to simply prolong life. Having said all that, eventhough her quality of life is by all standards very poor, she is not ready to go yet. She is not afraid of dying, but the closer she gets the more precious life becomes.
Hello, thanks for that comment. Same as, CPAP, wheelchair, no speach, head on one side, however, if you read my last reply you might see my point. It’s not the system or her, it’s the b***y SALT team interfering and pushing her. It simply ends up in tears. She really needs to em and I can’t make and decisions for her while she can! By contrast he way, she no longer uses the CPAP as it makes her feel bad, no sense of taste, finds any movement painful so simply moves with a Sara steady from bed to electric chair. I wash her clean her change her catheter clean her up after misshapes. Where is the quality of life? I suppose we are all different!
I understand and unfortunately empathise completely. Our situation is a little different, in that we have not had major input from SALT team, and our local hospice have taken over the management of my wife's continuing care. My wife was asked by hospice that if things take a turn for the worse would she go to hospital to which she said no. So hospice have said that that is fine, that they will look after her going forward, be that either here at home (preferably) or as in patient in hospice. They have also drawn up in writing my wife's wishes in this regard.
So difficult for you. My husband TC same stage or worse than your wife re speech, mobility breathing etc. He got RIG done in March this year - after 2 failed PEG attempts. TC was very sure he wanted the procedure done so different from your wife. It's a very difficult decision for you both. Have you got hospice involvement? They might be very helpful. If you want more insight re our process of getting RIG done - I'm happy to give more info.
1st attempt PEG - hadn't told him to stop Clopidogrel so couldn't attempt. 2nd attempt stomach anatomy made it impossible. The anaesthetic affected him very badly and we realised he needed breathing support. Took him back into hospital for week to assess breathing - set up BiPap. Eventually got RIG done March 23. Actual RIG went very smoothly - very little pain after. Major issue was getting him in and out of hospital. 1st twice couldn't organise patient transport as had to phone in am check they had bed for him. 3rd and 4th times organised bed in neurology ward - was much better. Also had to take all his equipment with him - cough assist and BiPap. I also had to stay in hospital til late every day as he couldn't communicate with staff. They would have organised bed in his room for me. He had to wear BiPap machine during procedure and one of ventilation team had to be with him. So was organised jointly with respiratory team. He has been better since getting RIG done - much easier re nutrition and medication. He had lost and was continuing to lose weight. He'd been having multiple chest infections prior to RIG. After RIG was still drinking milk - had couple more infections so now nil by mouth. Hope this helps
My husband refused all kinds of feeding tube because he didn't want to prolong living with this disease. He lost all mobility, speech, communication, ability to eat, and every form of independence. He struggled to swallow and food passed into his trachea and he died from Aspiration Pneumonia. It was distressing and painful but I don't think he regretted his decision.
However what I regretted was his Respect form, saying he didn't want any life saving treatment. When he was dying and drowning in secretions, we called 999 but the first responder read the Respect form and then said he wasn't allowed to do anything as it would constitute saving his life. Without this form he would have been able to act. So my caution would be the "safeguards". Be extremely careful how your wife expresses her wishes for her future care, as it can be misinterpreted and taken as a prohibition to relieve any future problems she may have.
My sue and I spoke about a PEG some years ago and she eventually decided that she wanted to live as long as she could do she had the operation in 2017.
She and I agree that this was the best thing that she could have done as she is today still able to tell me off and take her to M&S.....
We use it for her meds and food supplied by the dieticians when she doesn't eat.
Our journey with MSA started in 2000 with a probable diagnosis is 2017.
It is easy to use the peg and is not visible under normal clothes.
The hard fact is that without it the sufferer is most likely to have a shortened life.
Hi Paul, thanks for that. All comments are greatly appreciated. It would seem that Sue has had this horrible experience for many years, I feel for her. My wife is no longer able to do “anything “ for herself, no mobility and she now has a computer program with her banked voice to talk. She is very overweight lol! As have tried to keep her diet up even when she only has a spoonful of food. Frankly not sure of the future save to say it’s not that far away, therefore, that’s the reason I ask the question, is it really worth the possibility of problems when she might not even have the opportunity to use the tube.
My mum had a RIG fitted before coming out of hospital in April after recovering from aspirational pneumonia. They positioned it like there was no other option and it would stand her in good stead for later stages.
It is good for nutrition, meds and water. She still has the odd thing for taste. She can't move or talk much. She is 78.
My mum had big complications after 3 months, a hole came in it. So we were back in A&E despite not wanting to go back in hospital ever.
They replaced it with a smaller tube and gave an urgent referral to get the 16ml tube back.
The 12ml blocked so we were back in hospital the week later waiting for them to schedule a swap. In the meantime they flooded my mums lungs with fluid and halved her meds by mistake!
It eventually got changed 3 weeks later but we didn't realise that we would have to go back into hospital again for the change.
It has allowed us to not worry about her eating or drinking badly.
We can still take her out to gardens and even to see her friends for now. Her chest is slowly getting worse and worse.
My question is what is the cpap used for? Would it help clear fluid on the lung or just keep airways clear?
Not ideal in terms of quality of life but other than that her health is not bad.
Hi, thanks for your help. It means a lot to me to try and understand different opinions with regards to having a tube fitted. They have already told her there is likely to be issues as she cannot be sedated or lay flat and as for the CPAP she uses this “portable” machine to assist with breathing. It forces air via a mask into her lungs under pressure, as she takes a breath it pushes air in under pressure to fully inflate the lungs. Sounds awful but not really that bad, soon get on with it, however, as it’s a matching it’s relentless and started to overwhelm her so she stopped using it and has relaxed again. Her breathing is very fast and short as if she’s been running. Hope that helps you a bit.
The procedure of having a RIG appears to be very straightforward. Once it is in and first change is done in hospital it is then done out in the community. The Abbott nurses who look after mums tube do this. We also get the district nurses changing the balloon fluid which means I can ask them questions if I get worried about her.
I watched them try to change the tube in A&E and it is one in and one out. So no probs generally.
I did however read that RIG complications can lead to issues. But so far so good. It has taken away some of the stress around her lungs for a while.
It breaks my heart hearing all these messages it brings it all back to me. I lost my Frank on the 28th March to this awful illness.
I wish I could of had him longer but in a way now even though I miss him dearly every day and my life is so sad without him, I think it was for the best because he had no quality of life in the way he was use to. His health declined very quickly and all that he loved taken away from him.
He had sleep apnea, could hardly talk was in a wheelchair because his balance wasn’t any good then to top it all a tube in his stomach and after all that told he couldn’t eat only puréed food and have his medication by tube.
He tried everything to give him extra time he was such a lovely man and a wonderful fighter, fighting for his life and to no avail God knows best and it was his time. He was only 53 bless him six months now since he went to sleep, as I said I miss him dearly every day but I have him in my ❤️ forever and my lovely memories of him.
The illness takes the best and there’s no cure as yet hopefully one day they’ll find one 🙏🏻🙏🏻🙏🏻
Hi my husband, Phil, has had the RIG fitted. It was a simple procedure, no pain. He did initially go for the PEG but at the point of getting it fitted they discovered that the hernia he had was in the way! Having the RIG allows him to get more nutrition, and to have his medication easily . To be honest he has not had as many chest infections since having it fitted ( fingers crossed) and I do put this down to his nutrition and strength being improved. Sending best wishes and hope you both come to an agreed decision soon. Take care.
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