Fellow sufferers of Asthma do any of you have Trachiomalacia or bronchiomalacia?

I was diagnosed with asthma two years ago, after a year of not responding to meds i was referred by my local thoracic consultant to Addenbrookes hospital. Further tests revealed trachio and bronchiomalacia, collapsing of the bronchioles and wind pipe on exhaling together with cronic severe obstructive asthma with small airway remodelling (lower lungs now dont work at all as completely closed with inflammation and thickening due to long standing uncontrolled asthma). I also have vocal cord dysfunction but this is working in my favour as the vocal cords are adducting incorrectly to control the lung pressures caused by the malacias. My consultant at addenbrookes only has 2 other patients with this problem so I am intrigued if there are any other out there with a similar diagnosis?

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  • Its interestin u post this, i got arsey the last time in hosp as a doc tried to tell me there could be something else wrong as my upper airway seemed to be blocking off...they though it was my laryx collapsing and shoved a camera up my nose and down my throat (whilst awake i may add l) but all was fine...my consultant also said that the steroid nebs and inhalers could effect my airways and vocal cords and cause them to collapse and could collapse more during and attack...nothing more has been mentioned though since my larynx was given all clear...do u rekon i should mention what you have to them!!??

    X

  • Hi,

    So you too are ""interesting""! Thanks for replying, I definately think you should mention it, I was diagnosed after a broncoscophy too after initially being told ""something else"" was causing breathing problems on top of the asthma I too was awake initially for the vocal cord analysis, they need u awake otherwise it can mask the problem under sedation (not nice is it) then i was put under for a very detailed examination of the small airways after the usual trachea/bronchus look. The problem seems very specialised and rare and was only picked up on referral to Addenbrooks specialist centre, not by my local consultant, so if your broncoscophy was done locally you may be better to be seen by a specialist center dealing in more cases of rare diagnosises. Well worth your while persuing, let me know how you get on.

  • Interesting is a fab name lol

    i have been told i am on maximum treatment for home, and i have to say the amount of meds i have to take a day realy does annoy me. I went out tonite and had to b in by 10 to take meds as could feel lungs starting to give up...its only been a week again that ive been out of hospital!!!

    I have made my own.oath that when possible my meds dont and wont control my life...but if there is something going on like my consultant thinks then surly all these meds arnt going to help 100%

    I have noticed as well that my potassium is a mass controll over my life and have recently foind out that when my asthma starts getting worse i go into a vasious circle that i need more nebs, my potassium drops and wat i didnt know is when you have a low potassium your breathing becomes effected to...

    I have decided that since my mass flare up in april till now asthma is a b*§t@®d and isnt just a blue inhaler...it is rather serious...and ive got to the point now that i would do anything to have my life pre flare up back...now get rid of asthma as it is who i am but a few less drugs/flare ups/men in green/ hospitals etc would be great!!!

  • Wow, this is really interesting you wrote this....

    My little girl, aged 2, has chronic brittle asthma, on countless meds and daily maintenance pred. She was diagnosed on bronchoscopy with Pulmonary Aspiration. She then had a Videofleuroscopy, which is a procedure that is like a video xray that looks inside as she eats, swallows etc too. This too prove she had this swallowing defect. Basically she doesn't swallow, it doesn't trigger when it should and then the food just sits at the back of her Tongue and slips down into her lungs.

    I have often wondered if things collapse inside, whether her throat collapses or her lungs do as she breathes.

    Would this have been picked up on her bronchoscopy/ct scan?

  • Dear Emily 35

    Oh your poor little girl, how do you both cope with that as well as brittle asthma? To answer your question the gold standard for diagnosis is via bronchoscope, I think there are trials to spot it on CT but as of yet its not considered conclusive. My problem does not cause swallowing defects for me, as my trachio malacia is further down the trachea but it can affect any part of the trachea and is more common in babies and young children than adults. It certainly cant hurt to ask if they looked for this on your daughters bronchoscopy or if they videoed her bronchoscopy (they did mine) to ask them to re-evaluate it or request a second opinion depending on who/where her test was done, obviously if it was at a specialist center they are used to looking and finding rare disorders and probably would have spotted this, but local hospitals maybe not so good, mine was not found at my local hospital but on referral to Addenbrookes. Good luck and let me know how you get on. x

  • Dear Charlie-warlie aka ""Miss Interesting""

    My heart goes out to you, coping on a day to day basis is enough without worrying about the next flare up or indeed getting to the bottom of your diagnosis which is frustrating enough on its own, the anxiety of that is enough to cause a flare up.

    All I can say is like you when I was told by my consultant locally that I was on maximum meds and that was it, your severe get on with it, I just knew there was something else wrong and going on. Like you i thought if i'm on max meds than surely something should be helping! I felt like they did not believe me. After a particularly bad asthma attack in hospital whilst on max meds I was under a different consultant who was suspicious that there was indeed another problem and it was he who referred me to Addenbrookes, hey presto additional diagnosis to add to the asthma.

    I am very fortunate now to have two very good consultants who work together and I am no longer considered ""difficult"" just very ""interesting""! You know yourself better than anyone, if you are in doubt keep asking questions, you're fortunate to have a good consultant who is indeed suspicious of another problem and looking at alternatives, I know many people here have difficult and severe asthma but I do wonder how many associated, albeit rare conditions, fall through the net that could possibly impact hugely on people just labelled and left as difficult/severe to get on with it. I can sympathise with the whole potassium problem its ongoing for me too with all the nebbing mine tends to show itself as terrible cramps in very odd places so thats next to sort out! Best of luck and hope you get sorted. x

  • I do!! lol I have bronchiomalacia! i have never met anyone else with it either... so Hi!!! :) haha

  • Hi Chloe,

    Oh My god, amazing……… I don't feel so alone anymore!!! Sorry you have it too though, I just looked at your profile and your one tough cookie to cope with the meds your on, poor you.

    I'm very pleased to ""meet"" you Chloe, may I ask are you on bi-pap for your bronchiomalacia? I dont mean to be nosy but I know it can be used to help keep the airways open in bronchiomalacia, CPAP has also been mention although i'm not up on the differences between the two, maybe you can shed some light on this for me as a user of Bi-Pap?

    How do you cope with your bronchiomalacia?

  • i have private messaged you :)

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