I was born with a rare muscle disorder called RYR1 positive myopathy. It presents similarly to muscular dystrophy, though non-progressive. On December 9 I had a double coronoidectomy to treat severe trismus. I was only able to open my mouth about the width of a pinky finger, which was preventing urgent dental work.
The operation was successful and I’m now able to open my jaw a significant amount (but I’m not able to completely close it now, but that will improve with therapy).
They said I was a “difficult intubation.” They tried to do a nasal intubation, but that didn’t work so they reintubated me through the mouth. 48 hours after waking up, they extubated me and I immediately went into respiratory distress from severe swelling. I passed out and they had to bag me. I woke up and the swelling subsided enough for me to get some air through BiPAP, which I normally wear at night for apnea.
At this point my voice was hoarse and my tongue was swollen. I wasn’t able to swallow liquids very well, though I didn’t aspirate. I was like this for about two days, but became very weak from not getting proper nutrition for five days. I was also developing pnemonia. They decided to give me a trach and an NG tube for feeding.
Three weeks later, after aggressive respiratory treatments, my chest has cleared up and I’m off antibiotics. However, I still can’t swallow anything, not even my own saliva. I had two modified barium swallow tests and it showed that liquids pooled at my upper epiglottal sphincter, then aspirated down to my trach. The speech pathologist said it’s probably due to swelling and I need to wait, but it’s been almost a month and I’m still in ICU because of this. They want to send me home with a PEG tube and the trach, but that’s obviously not a favorable situation.
I’m absolutely miserable like this. I need to have the trach cuff inflated at all times or I’ll constantly aspirate my own saliva and require suctioning every 10 minutes. I can’t speak or breathe around the trach even though they’ve downsized it to a 4. I haven’t eaten or had anything to drink in a month and I’m always craving food and drink.
The speech pathologist won’t see me in ICU. They won’t order any scope or CT exams because they say those procedures are out patient only, but I can’t leave ICU like this. All they’ve told me is it’s probably edema from intubation.
I’m scared I won’t get my swallow back and I’ll be unable to wean from the trach because I can’t breathe around the smallest size. I’ve always had a sub-optimal swallow function, but not this bad. I needed food chopped up pretty small or some would get stuck in my esophagus, but I never aspirated and never really thought about it because it was so easy to live with.
If it’s swelling, how long does it take to heal? I’ve searched around on the internet but this seems to be a rare case. Any words of advice or hope?
Swelling is an immune response. Vitamin D is a pretty good immune modulator, being chemically very similar to cortisone. Have you not been prescribed anything for the swelling? I would try some vitamin D supplements for a few days. The diet you’re getting is probably not helping, either…highly processed/cooked foods are not so great for reducing inflammatory responses. You’ve got to get the swelling down first, though.
get lives: How dare you make a post like that?
Man I am so glad to read your post. I as well was born with a limited jaw opening of about the same size as yours, actually me and my sister. My sister was diagnosed with Central Core Myopathy I believe and had some sort of surgery but it didn’t help much.
So I went to UCLA for many years where one day they finally diagnosed me with Billateral Coronoid Hyperplasia. Basically my coronoids had overgrown and were impeding on the jaw. I ended up having a coronoidectomy at UCF Jacksonville, where they said in OP they got me open to 28mm.
After Surgery I was about 8mm and they said I would need to do post op Therabite work to increase the opening. I have been doing the post op work, but now I am not only closed back up but worse then pre surgery. I can not get the stretching to maintain, for more then 30 minutes and it only increases a slight bit.
Can you tell me if you had any issues and if there was anything else like fibrous work that had to be done besides the coronoidectomy.
50,000 dollars later I am worse off than I was and I know you can understand what it is like not being able to eat like a normal person. It really causes some social issues.
Thank You and I hope everything works out for you.
Since this involves medical advice, let’s move this to IMHO.
Colibri
General Questions Moderator
Just as information, the OP has not been active on the board since he made that post, so it is unlikely he will respond personally.