Dysphagia. Has anyone who's eppiglotis has failed ever got anywhere with swallowing liquids?

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slimbob123

Hello all. Where to begin??  2008 I was treated for tonsil cancer. 6 weeks of radio and couple of sessions of chemo. Radical neck dissection, removed all my teeth the usuals. All went well, lost all saliva glands but soldiered on. I became quite a master at eating dry food to a point where I would polish off 2 bags of crisps a day and crusty bread. Until 5 years ago. Started coughing up food and getting phneumonia every couple of weeks. Turned out they had fried the top of my spine with the radiotherapy and given me nerve damage to my throat. Back in hospital, they put a peg in and had swallowing scan. A proportion was going into my lungs which I kind of knew that. So, nil by mouth was the answer and I cracked on as normal as I could. I lost 5 stone in 8 months and started to develop drop foot. This would come and go and suddenly I was having trouble even standing. My intake of water and nutrition was good and stable. They did a tilt table test which was abandoned after 5 seconds. I also started to lose the ability to speak. My tongue became paralysed and just when you think nothing else could go wrong along came Covid. All appointments were scrapped for obvious reasons. After 1st month of lockdown I developed serious serious pain in lower back and leg. Absolutely nothing I could do. Eventually after 12 months the hospital said that I would need to be assessed by a pain management team. For 7 days I lay in a room on my own, each day the nurses would ask me on a scale of 1 to 10 how bad is pain. The sweat was dripping down my face so you can imagine how bad it was. The nurses became really emmbarressed that nobody had yet seen me. After 7 days I called an Uber and walked out. Went home got on the net and ordered my own pain killers for Canada. Couldn't get in to see my own DR for a month so I kept taking them which helped. Living on your own and not being able to speak is a frigging nightmare when trying to organise anything. Finally got in to see my DR and he put me on 25 micros of Butec patches along with other tablets which I crushed and put through my peg. It's now bearable but am very limited to what i can do. My mouth became so sore to the point where my gums and tongue would crack and bleed. I made my own mouth irrigation system which if i may say is the best thing since sliced bread. Sounds daft that in todays world where i live in a 1st world country that the feeling of cold water in my mouth swirling around and falls out into the sink is the only relief I can get. So anyway if your still all awake LOL. I have noticed that when I use the irrigation system that water is making it's way to my stomach. Sometimes I sound like a walking hot water bottle. I havnt asperated once in past 5 months when using it. Where I was used to asperating at least once a month for just cleaning my mouth with swabs and toothbrush. Has anyone who's eppiglotis has failed ever got anywhere with swallowing liquids. I'm not interested in food, lost my appetite years ago. I'm not going back to the NHS as it's a complete mess and was thinking of having a private swallow test to see if anything has changed with my eppiglotis. I would just hate to miss out on being able to have a brew if you know what I mean.

Ross_Alumni

Hello @slimbob123  

 

Welcome to the community and thank you for speaking about what you have been through. It certainly seems as though it has been a tough few years for you, and that you haven't received as much support as you'd like.

This is a very supportive and welcoming site to be a part of so I’m hopeful that you’ll find it to be a positive outlet. Feel free to have a look around and get involved wherever you’d like 😊 A few notable pages I’d recommend visiting would be:

• The virtual coffee lounge which is one of our categories, in which we play games and talk about general subjects such as hobbies and interests
• The recent discussions page, which shows an overview of everything happening across the community
• The categories page, which shows a full list of discussion groups on the community

If you have any questions at all then don’t hesitate to ask.