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Any adults have experienced with subglottis/ trachea stenosis or tracheomalacia/laryngomalacia?

4 Replies

From what researched is not something adults usually have. My lungs sound fine. But For the last year or so I get tightness, wheezing and Stridor in my throat. My oxygen goes down when it's bad, and it's hard to breathe in and out like I'm breathing against something.

It's not allergy, I can go days without eating and fast. And it still happens. From my chest up to my chin that trachea area, it always feels blocked and tight 24/7. I don't have throid problem either.

These are rare disease. I would like to look into if I have it. Does anybody here have any experience with trachea disease?

4 Replies
EmmaF91 profile image
EmmaF91Community Ambassador

Hi

Have you also read watch ILO/VCD ?That is a lot more common and would also explain your symptoms if it is something where you might have a day or so without symptoms. As you said Tracheomalacia etc is very rare and is often connected to a particular cough. If you do suspect you have it it’s usually diagnosed via bronchoscopy and lung function tests as well I think, so it’s work asking for a referral for those to help rule it in/out (it’s the same tests/very similar for testing for VCD as well I think)

Good luck and I hope you find your answer soon

Jandm profile image
Jandm

I have tracheobronchomalacia. It flops around like a windsock in a gale when I cough/bark. It’s a daily issue. It started with my hypersensitive airway which caused constant coughing when I was subjected to irritants at work. I could actually feel it becoming damaged, areas felt like bubble wrap being popped and each time it happened my cough changed. It also collapses when I try to lift anything, or spontaneously and I have to fight to get my breath. I have severe asthma and bronchiectasis, so it’s a juggle to keep things under control. If you feel you are heading down that path then a bronchoscopy would show this. Prevention is better than cure and it’s better to know so that you can protect your airway......it’s a very precious thing, look after it and good luck, I hope it’s not for your sake

in reply toJandm

What has your daily treatment been?

Jandm profile image
Jandm in reply to

Daily antibiotics, nebs prn via a pep mouthpiece, montelucast, inhalers, codeine and a rescue pack as necessary. I basically balance and micromanage everything to try and prevent further deterioration, otherwise I will have to go onto a permanent CPAP and that for me is not an option yet

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