Immediately after my accident, I could only speak in a strange high pitched voice. I continued to squeak for months afterwards too. But a more serious and distressing affect, was my difficulty with swallowing. I would choke on foods all the time. This is dysphagia, which partially could be due to some damage during intubation. There was a significant bruise on my neck which hinted to the problem.
Even my tongue felt foreign. It felt like it was too big for my mouth and didn’t fit. But also I would find, even if I hadn’t finished chewing my food, my tongue would decide to try to throw it down my throat anyway. Don’t know who my tongue thought he was, getting above his station like that!
But my brain injury was partially to blame for my dysphagia, as my tongue and throat muscles were getting the wrong instructions.
A speech and language specialist taught me some exercises to reduce the tightness in my throat muscles. In time this allowed my voice to return to normal.
One day I thought a tiny bit of food was stuck again in my throat, thanks to my gun ho tongue, but it seemed to be there for days.
I think I had become a bit complacent by this point. I was so used to having uncomfortable sensations, that I just tried to ignore all the signals. But a part of my brain remembered (rightly or wrongly, I’m really not sure) that I was eating crisps when this first happened. Kettle chips, which had been a favourite of mine of some time. I loved the more rigid and sharp texture of them, but now that felt like the problem.
Eventually it became clear it couldn’t be food lodged in my throat, as it went on for too long. It would get worse with stress as well. I affectionately named this “lumpy”.
An ear, nose and throat specialist used a camera to check there wasn’t a growth of some kind. He did this by putting a camera up my nose and down my throat. I knew that a camera was needed, but up my nose?! But I got the good news that there wasn’t anything suspicious in there, just my stupid brain being a bad manager and causing muscle tightness.
One day, when I was stressing about something, “lumpy” came on so strong I couldn’t breathe. My throat felt like it had closed my airway all together! I tried to put myself in the recovery position, where the head is tilted back to open the airway. I was sweating, couldn’t speak or make any sound at all. Feeling dizzy as I must have been suffering from a lack of oxygen. Luckily James (my partner) was on hand to calm me down enough for me to manage to get some air. Maybe that’s a panic attack, but it really did scare me.
So I continued with the exercises, and continued to improve. But I haven’t had a Kettle chip since. I’m clearly blaming them for something that wasn’t their doing, but I think I have developed a bit of a food phobia. Anything that has a similar texture I have avoided ever since. Even just thinking about this as I write I can feel the sharp pain of a kettle chip sticking into my throat.
I’m pleased to say “lumpy” hasn’t been around for a while now, and I’m hoping it stays that way. My experience of dysphagia was uncomfortable at the best of times, and terrifying at its worst.
8 replies on “Dysphagia caused by brain injury: Why swallowing can be a problem”
Thankfully no. It sounds awful the closest I’ve come was having been incubated, or tubed for my disc-bulge surgery. It was to my lower back. I imagine they rolled me over, and I suspect the tube moved some? Not really sure. The surgeon came to speak to me straight after they took out the tube in recovery. It was Remembrance Day and I remember it was the best sleep ever! And he was telling me the surgery went well. You would hope so but my thought felt scratched from the tube. Felt like I needed lubrication.
That sounds really uncomfortable! I hope your recovery from surgery went well.
I have a ‘lumpy ‘ too, I was told it was from the tube down my throat during 5 hours of brain surgery. I’ve noticed it gets worse when I have had a stressful situation or been crying. After food I am convinced that there’s still a peice of food stuck in my throat, so gulp down water and keep swallowing, but then as I am disstracted by something else and become calmer, I forget about it and the lump goes. I have thought many times ‘it’s all in my head’ I haven’t got anything stuck, it’s like my crazy poorly brain is playing tricks on its self. Good to know that I’ m not the only one who has this craziness in a brain injury.
You’re not imagining it, you can feel something. But it’s your muscles. You’re not crazy, we’re just more sensitive. Women are especially prone to it, as we hold tension there when we are upset more than men. Yes it is exactly the lump we get in the throat when we are welling up!
Thank you for sharing your life and experiences! I have an acquired brain injury from having a brain tumor and multiple surgeries for a csf leak. I kept telling my doctors that it’s hard to swallow sometimes and, I too, have had the camera up my nose and down into my throat!! Ugh! and it’s almost as if my brain is just leisurely doing it’s thing while I’m chewing or when needing to take meds and then bam! It’s says, nope, aaaand now you don’t know how to swallow! HaHa! And because of how inconsistent this is I am usually caught off guard and start a little panic attack which makes it even worse!! Fatigue usually makes everything brain injury related so much more frequent! Reading your experiences gives me a comfort knowing that I’m not alone! Thank you!
Yes isn’t it crazy the way the brain can throw it’s toys out of the pram and make fundamental tasks like swallowing a nightmare. But then it’s behaving normally again like you imagined it.
I’m so thankful to have read this. I’m 7 months into my TBI. They had me do a swallow study when I kept choking on food. They didn’t find anything significant so they said it was like when a stroke patient loses use of their arm. It’s because the muscles forget what to do. Same thing with my throat muscles. They gave me a few exercises, which helped initially. But the problem has returned more severe. And I do notice a stress connection at times. I’m hoping with time and maybe a return to the exercises it will improve. Thank you so much for this article! Itssogoodtoknow it’s not just because I’m weird or broken. 💚
Hi Rachel, I too still have some reoccurrences even now. You’re right, continue with the exercises to train and strengthen your muscles, it does get better.