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?
I’m afraid I can’t help with the stenosis side of things, but I do know a reasonable amount regarding malacia generally.
Malacias of all types, whether that’s broncho, tracheo or laryngo, fall into two categories. Congenital (often genetic based) forms are typically diagnosed in infants when they cause symptoms: it is entirely possible to have a congenital malacia that isn’t diagnosed until later life if it’s mild, particularly if there are no other health concerns, or have an undiagnosed, mild congenital case that worsens as a result of other factors later in life. The acquired (non-genetic) forms involving the trachea and large bronchial airways are actually considered fairly common in adults with certain chronic respiratory diseases: it’s estimated about 30% of late teens and adults with cystic fibrosis have the acquired form of tracheomalacia (TM) caused by damage to the tracheal structure often as a result of prolonged coughing over time, effecting about 2000+ people in the UK in that patient group alone. Acquired malacia can also occur in people with no underlying respiratory disease as a result of recurrent infection, trauma, foreign body ingestion, exposure to certain gases and chemicals, or changes to the tissues themselves as a result of another disease process, but more often than not, no cause or trigger can be identified. TM is also known to be a specific side effect that can occur as a result of prolonged medical intubation in some cases. Tests to diagnose malacias and the treatments available are identical regardless of whether the patient is a child or an adult, or whether it’s acquired or congenital. The main caveat to all of the above would be laryngomalacia, in so far as although we know it can occur in adults in an acquired form, it is still an exceptionally rare diagnosis with little understanding of it due to so few opportunities to study it.
What tests have you had so far in an effort to diagnose your problem? I’m assuming the doctors have seen that your oxygen sats are being effected, what are their suggestions on possible cause so far? Have they tried you with inhalers to see if you do respond to those? Interestingly, TM often produces a very distinct graph pattern on spirometry results, so spirometry can give a high index of suspicion for malacia even with normal values for fev1 and fvc. Have they run spirometry and/or pulmonary function tests with you? Inspiratory sounds and a non-responsive wheeze are fairly typical of tracheomalacia, but the only reliable way to pick up any kind would be visually via bronchoscopy or oesophageal endoscopy, and it’s actually very easy to spot, particularly in cases where it’s severe enough to cause symptoms. In addition to TM, there is also a distinct, separate diagnosis with similar symptoms called Dynamic Airway Collapse (DAC), but that again would need to be diagnosed via scope, and many patients actually get diagnosed with TM due to a lack of understanding or expertise regarding the difference between the two. My daughter (almost 13) had congenital tracheobronchomalacia that caused her problems from birth, and although the bronchomalacia element has improved somewhat over time, she is one of a relative minority of congenital cases that didn’t experience full resolution as she’s grown: it no longer causes her functional day to day problems with her breathing outside of making her underlying respiratory disease more difficult to manage, but she still has pronounced tracheomalacia apparent via scope to this day along with slightly unusual tracheal anatomy, both of which are considered permanent.
The big problem with most malacias, be that congenital in children or acquired in adults, is that even in severe cases there is very little in the way of reliable treatment available. In really severe, progressive cases there is the possibility of tracheal stenting, but it has a notably poor success rate and high levels of complications. Similarly, tracheostomy is used as a last resort, but has been found to quite often worsen malacia. More conservative management is therefore generally favoured in the first instance, and where symptoms medically require intervention, that typically includes the use of CPAP to splint the airway open to improve breathing: this is done with adults with acquired forms, but is also the mainstay for treating many congenital cases, and this was considered with my daughter when she was a baby. Again, the exception to this would be laryngomalacia, where some success has been found in surgery to and around the epiglottis in the few adult cases documented to date: it may be very rare, but the management outlook is actually a lot better than with moderate to severe TM.
Just a thought, but have they looked into GORD with you? Severe reflux can be silent, meaning there are no obvious symptoms, but it can cause tight, restricted sensations in the throat and issues with breathing in some cases in its own right, and can also significantly worsen issues for those who have tracheomalacia.
Hope some of that has been useful to you, but I’ll do my best to help if you reply with any specific questions.
Hi, just wondering about the allergy .....have you been tested for any allergies, not just specifically food allergy but environmental , such as grass or tree pollen, house dust , pets ?
Has asthma been ruled out .....I am asthmatic and get stridor and a narrowing of my upper airways during an attack?
Any medication that you could be reacting to ?
Has your breathing pattern been monitored.....nose breathing not mouth , and gentle slow and low breathing ?
I hope you get some relief soon .
For people in the UK the BLF has a helpline open during office hours on 03000 030 555
Hi ab91 i have idiopathic subglottic stenosis. I was diagnosed in 2000. Stridor is a symptom. The area in the trachea gets narrower and narrower from scar tissue that grows over.and patients get breathless at the slightest exertion. The best way to explain it is it is like breathing through a straw with a peg on your nose! You will also have a cough.Many people get wrongly diagnosed with asthma. You need to see an ENT. There is a wonderful Facebook group Living with idiopathic subglottic stenosis. How did you find out about ISS? It is rare. There are a number of options of treatment. Lots of GP s don't know about it. Do get a referral to an ENT. If you are struggling to breathe do not delay and check it out. It can close right over. I was breathing through a tiny hole when I ended up at ER and had to have an emergency trach. Best wishes from Oz.
Hi there 🙋♀️ ab91 and although I'd never heard of your condition, when reading the responses, especially from Charlie G, i can understand how you are finding it so difficult to get a proper diagnosis and treatment plan. Such a rare condition. Good luck and there must be a 1st class ENT Consultant who would take you on? Please do come back and tell us how things are moving along. 🐿🌈
I dont have this but do have VCD =vocal chord dysfunction - through/,vocal chords literally close to a pinhole with similar symptons.i also have gerd and chronic laryngitis,among other diseases of airways/ lungs
I’m happy to chat about this. I have a form of subglottic tracheomalacia, laryngeal and a couple of other diagnoses such as severe asthma and tracheomalacia. Can share some of my treatment plans etc, feel free to DM. Not sure where you’re based but I’m under the severe asthma team and Manchester Airways Service who are brilliant. They’re based at the North West Lung Centre at Wythenshawe Hospital in Manchester. Hope you’re well.
I have dynamic airway collapse and was wondering if any if you have ever been under conscious sedation? I need to go under but I am afraid because of this condition
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