Hi
I had a brain-stem stroke last March which has left me unable to swallow. I’ve been doing the various exercises (EMST etc) but no joy. Has anyone any experience of neuromuscular electrical stimulation (NMES)?
Pat
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Hi Pat @pathazel & welcome. I’m sorry i can’t offer any advice on your issue but just wanted to say hi.
Hopefully someone else will be along with some advice.
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Hi @pathazel
Welcome to the community that is here. Sorry you have had cause to join us.
If you use the magnifying glass above to search for swallowing there are more than 50 hits.
I cannot remember reading any that mentioned FES for swallowing 
There is plenty of shared knowledge amongst the community though so maybe somebody will be inspired by your question and have some relevance information to share
There’s been quite a lot of discussion about food for swallowing difficulties and PEG feeding. Again it will show up usually magnifying glass above
Ciao
Simon
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Thank you for your reply - so Hi back
Pat
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@pathazel Welcome, sadly I had to have a feeding tube put in 2nd week in the hospital. I was devastated about it and One night in the hospital bed I swallowed a huge amount of saliva. I was shocked and elated…then tried it again. I shouted to the nurses and they got me working on a team to help me better swallow. Apple sauce at first and then on to more challenging food. What a relief. They left the feeding tube in me though for three more weeks…hated it.
I hope and pray you can get your swallow back naturally. All the best to you.
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Hi Pat, I’m new to this forum. I had a stroke on my birthday, last July.
Since that time I’ve been unable to swallow and I’ve been on a PEG since last September. I went to see a doctor who specialises in ENT yesterday. He recommended cutting my throat until it sliced through a muscle to help me swallow. The downside is it might puncture my food pipe or at worst kill me due to the anaesthetic!
I’ve not heard of electrical stimulation, so I’m very interested like you. Please help.
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Further to my last post; 2 weeks ago, I saw an ENT Surgeon last week, who told me there was little point operating on me because the inability to swallow was caused by by my brain.
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Do they expect that your swallowing will return in time if it’s brain related & not your throat? I hope you’re getting input to help sort the problem.
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Hi, no I’m not receiving any treatment. The Speech and Language Therapist left in October 2023 saying there was no point continuing therapy. I’ve not given up yet, I’ve heard stories of people who started swallowing after 3 years!
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Absolutely never give up. There’s always a chance things will improve. Perhaps the therapist gave you some things you can continue to try yourself to help? Best of luck.
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Hi @PhilipS
Do you have any exercises?
I’ve found that physio dont know how to match a progression of capability acquisition to current state of my development.
I’m a bit luckier that I’m after hand exercises and can study the one that still works. I’ve found when something isn’t connected to my brain that working closer to it - eg wrist rather than fingers, finger contractions rather than extensions etc slowly over the months seems to deliver a bit of capability where I want it that is then the basis upon which the build
2¢ hoping it will be useful
Hi SimoninEdinburgh yes I do receive twice weekly physiotherapy. This involves getting me to stand and walk, reach out and twist as well as stepping up and balancing. The physiotherapy has been specifically designed to help me venture outside and get into a car. Unfortunately I have Charcot foot on my right side and my heart only operates at 35%, so I get tired very easily.
I meant do you have any swallow/ throat regimes that are a potential path towards swallowing
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Hi. Sorry no, I was told by the speech and language specialist to stop the throat exercises as they weren’t doing anything last October (2023).
I’m ‘book ignorant’ but IMH lived experience opinion every exercise that we can craft by thoughtful examination of our conditions offers some hope and I have found specifically either delivers direct results or informs me of ways in which I can deliver results .
If I’d stopped where the medical profession told me in their erudite and sage opinion I would be a basket case with someone else wiping me bum.
Of course YMMV But doing nothing is guaranteed to not only not deliver results but make the delivery of potential results further off as compensations and learn non-use drive neuroplasticity in the opposite direction from that which we desire.
Just my two cents worth Phil
Ciao
Simon
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Hi I’ll start doing the throat exercises toute suite.
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