I've finally been diagnosed with traceomalacia after numerous appointments, tests, two bronchoscopies and miss diagnosis'. I've been told it's also called floppy airways. Not given any information on it. My specialist didn't even tell me how severe it is. Luckily my gp told me my airway closes between 70 and 100 % and that I must be careful as I could pass out due to lack of oxygen! Can't believe I wasn't told this at the hospital! He basically said I'd go on a nebuliser but waiting times are around 4 months and if I wanted any information on traceomalacia to Google it! Sadlt when I do it only really gives information on babies born with it. Anyone on here been diagnosed with it?
Thanks Hazel
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EmberDog
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Hello EmberDog, my husband Pete has been told he has floppy airways due to long term steroid use. Not sure how true that is. He has sarcoidosis and COPD and sometimes if he coughs too hard his throat closes up and he goes faint and shakes. It takes only moments for him to recover but it’s not nice to see him like that. Not sure what can be done as nobody as ever suggested anything.
I do wish you well and hope you get the help you need. Xxxx
I was told I had it then saw a specialist who specialised in it say I didn't have it then after bronchoscopy number 2 I did have it. No explanation as to why I have it. The nebuliser uses a liquid very high in salt which helps clear the mucus build up. Maybe see if your husband can get on the nebuliser too. I don't cough or get chest infections which are the main symptoms but I live quite an isolated life so I think that's why.
Hello hazel, Pete uses a nebuliser twice a day and takes lots of other drugs too. He’s not too bad at the moment and it doesn’t happen all the time. Good luck to you. Take care xxx 😘
I’m quite possibly going to have a CT scan to see if I have this depending on what my consultant says at my next appointment (but the team who saw me when I was last an inpatient have written to him to suggest it).
Unfortunately they’ve said I wouldn’t be able to have a bronchoscopy to look for it as my asthma is too severe.
Try looking up tracheobronchomalacia, i think its the same thing but tells you about adults with it and asthma.
Tracheomalacia is indeed ‘floppy airways’. There are two types: primary or congenital, that you are born with, and secondary or acquired, that you develop later in life, usually as a result of lung disease. Unless it’s extremely severe, there is nothing done for it, and even when it is severe, usually it’s a case of utilising a cpap machine overnight to splint the airways open because there’s been very limited success with any kind of surgical intervention. I know this because my daughter was diagnosed with it following her first bronch at 4 months old and we discussed treatment options as it was severely exacerbating her cystic fibrosis. We were told that most children outgrow it by the age of 2, but typically she didn’t, and her malacia (the floppiness) also extends to her bronchioles, meaning her diagnosis is actually tracheobronchomalacia or TBM. She’s almost 11 now and it does make managing her chest a little more tricky and has meant she’s had significantly more exacerbations than she would have done without it. The exact figures are not known, but it’s believed that about 30% of those with cf have malacia, some from birth, but most acquired as a result of their lung disease as time passes. There is also a link between hypermobility and malacia; they believe my daughter may have congenital TBM as a result of her fairly extensive hypermobility. All her major joints bend in the wrong direction, she has a scoliotic spine, and the trachea and airways are essentially cartilage so can be effected by connective tissue disorders.
I wouldn’t pay much attention to what the GP is telling you: most don’t have a clue about malacia, the same with some hospital docs. What your 70 to 100% occlusion figure actually means is that when you cough, that’s how much the airway closes, it’s not permanently 70 to 100% closed. If it were, your sats would be through the floor most of the time because malacia is an obstructive issue. Because it’s obstructive, you might find that you have some sleep disorder as a result, but the only way to pick that up is via sleep study. In my daughter’s case, it’s responsible for repeated night waking by causing paradoxical breathing and occasional desats, but that’s not enough to warrant starting cpap at this point.
Where you’ve got a lung condition and malacia, the primary concern is airway clearance. Where the airway occludes it prevents effective expellation of sputum, so for physio you need to be looking at using either PEP or an aerobica as these both use expiratory pressure to splint the airway open and allow clearance - percussion and acapella aren’t going to do much at all. The other thing that can work quite well alongside this is learning to do autogenic drainage. When littleun is particularly unwell, I do assisted AD with her, and it does make a difference. Hypertonic saline, the neb you’ve mentioned, lifts the sputum away from the lung wall to aid retrieval, but be aware that it can cause chest tightness, so you should always use salbutamol prior to the neb, and do chest clearance either at the same time (depending on the neb you’re given and the physio you do) or immediately after. Any preventer inhalers should be done after chest clearance. If you need to be hospitalised for an exacerbation, then I’d advise asking them about the possibility of using the bird or a cough assist machine for clearance whilst in, as these are brilliant for getting up crud that accumulates as a result of malacia no matter how good you are at chest clearance technique. If you need a general anaesthetic, make sure you mention the malacia to the anaesthetist too.
I know my airway isn't closed all the time and only bad when exercising or walking the dogs. My Dr didn't say it was all the time. He just wanted me to be aware I could faint if I was to do alot of exercise or any strenuous activity. I've had a sleep study but still not had the results. Last night I stopped breathing but my dog woke me and not for the first time too. My TM appeared from nowhere. One month i was running up sand dunes the next I was struggling on the slightest of inclines. I don't have any lung disease. I do have fibromyalgia and have had spinal surgery for a disc problem.
Apologies, I assumed you had a lung condition as there would be no point in prescribing saline nebs if you don’t. The sole purpose of those nebs is chest clearance for respiratory conditions. Acquired TM is mostly caused by recurrent lung infections or other respiratory issues, too. It can also be caused by large blood vessels putting pressure on the trachea, but the most common cause of cartilage breakdown is long-term respiratory disease.
Hi I’m so sorry to hear you have this condition, my granddaughter was a very sick baby when she was born , once home we all thought they let her home far too soon she was coughing up loads of green phlegm finally diagnosed with bronchitis . The only advice my daughter got was to buy a special foam Coshin to keep her up right this would help then she would suddenly pass out go all floppy and had to be taken to a& e . After a lot of hospital visits my daughter was told her poor baby had this and they were going to operate but because she already had 2 general anesthetics they had to just do it with some pain relief, we weren’t allowed to be in the room and sat in a room about 5 doors away and we could her her screaming they were burning off one of the floppy bits in the end it didn’t help and she had to have it all done again I have to say the second yime was a success, but she cried for weeks none stop all my daughter was told to do was give her calpol and they had her on antibiotic for few months. She was a poor wee soal st the time but gradually started taking her bottle and couple of teaspoons of food she’s 4 now loves dancing but unfortunately has been diagnosed with asthma. I don’t know if a small child having this or an adult is the same one last thing my granddaughter actually turned totally black nothing was bring her round my hubby knew what to do and got her breathing again that’s why they done the 2nd op as it also happened a few times in hospital she’s doing great now, I wondered if it was a genetic thing because 2 of my nieces have had babies in past year also suffer bronchitis and have the condition of of my nieces baby has need bad with it and they’re considering same operation although he will get anesthetic to have it done . I hope you get doe help soon as I think it’s s very frightening thing to have good luck my friend I’ll keep you in my prayers 🌹🌹
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