Large airway collapse : Been told today... - Lung Conditions C...

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Large airway collapse

Chip_y2kuk profile image

Been told today I'm susceptible to the main types of pneumo bacteria and need to have booster pneumonia vaccine

Also been told I may have tracheobronchomalacia (large airway collapse) ..... anyone know anything about this?

20 Replies

It has been added to my list of Zebras (rare diseases) in my lungs. It means that the airways collapse more than they should on exhalation. I am a trifle sceptical about my diagnosis. It was spotted in September 2020 from a high resolution CT scan. But no one else who has seen that scan (ie the radiologist) has mentioned it. There are remedies: splints, which kind of hold the airway open, and my consultant suggested that I should use a CPAP machine which pumps air into your lungs. I tried that for a few weeks but it did not help my symptoms so with the support of the sleep clinic I stopped using it. All the best

K x

Chip_y2kuk profile image
Chip_y2kuk in reply to Katinka46

I'm having some sort of experimental xray that apparently can detect it... it records like 10 seconds of video and doesn't just do a single image

They have also said they will do a chest ct (ive already had 2) .. but the ones I've had have been of me breathing in they want to do one of me breathing out to look for this

Katinka46 profile image
Katinka46 in reply to Chip_y2kuk

Yes, TBM is only detectable on exhalation during a high resolution CT scan. It is also the scan that is used to detect air-trapping and/or vascular disease. Good luck

Mine was detected on a CT comparing inhalation and exhalation. Then after that they got me to do a different spirometry test than usual. I had to blow out and and "keep going, keep going" like usual and then suddenly breathe in as fast as I could. They said that showed a massive difference in how fast I could inhale versus exhale, as the collapse was narrowing the airways severely and making me exhale more slowly and erratically.

With the caveat that I’m not remotely medically qualified. I’m familiar with TBM - my 14 year old was born with the congenital form effecting her trachea and the main bronchial airways going into the lungs. Depending on the extent, it can be easily diagnosable during a bronchoscopy, but it’s usually a coincidental finding from a bronch, not a reason to do one due to the invasive nature of the procedure. As Katinka says, an expiratory Ct scan can also be used to detect it and is becoming much more widespread as a diagnostic option. As for what’s done about it, it depends on the extent of the collapse and the problems it’s causing. Stents are a possibility in really severe cases, but not particularly common or favoured otherwise due to high levels of post-operative complications, the preference tending to be cpap for those where the collapse is effecting oxygen levels or causing other significant problems, either just overnight, or ambulatory cpap machines for daytime use now also exist. Although Bod’s collapse was and remains significant, we ultimately decided against cpap overnight for her because she was maintaining her sats. The main problem it really causes her and always has done is management of her lung disease - she has cystic fibrosis, and the TBM makes her more prone to infections, that are harder to clear because it also makes physio significantly less effective. It also gives her a very unique trace on spirometry results, too, as with TBM, any kind of forced manoeuvre (coughing, huffing, exhaling really hard) makes the airway collapse.

Increasingly, TBM is thought to be much more widespread than they used to think, particularly amongst those with any kind of lung condition: the estimates are that around 30% of all respiratory patients, including those with asthma, go on to develop some degree of collapse due to chronic cough. There is another condition that is separate but similar to TBM called excessive dynamic airway collapse or EDAC, which is also caused the same way. The term TBM is quite often used interchangeably for it when EDAC would be more appropriate, the main difference being that EDAC is airway collapse caused specifically by the posterior wall of the trachea, where TBM is universal collapse of the trachea, most often due to visible issues with the cartilage, but as I understand it, the treatment and effects are more or less the same. In our case, the teen is extremely hypermobile, and her TBM is likely a manifestation of having abnormally lax and stretched collagen, alongside extremely slow digestive motility and a propensity towards severe constipation.

I don’t know what your lung diagnosis is, but assuming you don’t need to go down the cpap route or other interventions, the main thing for many people is making sure you manage your underlying lung problem in ways that are TBM ‘friendly’ - minimising collapse as much as possible to improve the effectiveness of whatever treatment or physio you may do day to day.

Katinka46 profile image
Katinka46 in reply to Charlie_G

Thanks Charlie, that explains a lot and could perhaps help me to understand a slightly strange Spirometry reading I had early in February. The first since November 2019. Can you tell me a little about how TBM affects Spirometry?

Kxx

Chip_y2kuk profile image
Chip_y2kuk in reply to Katinka46

The specialist today told me it makes your spirometry look "wrong" didn't say why and I don't know what a normal one looks like

Charlie_G profile image
Charlie_G in reply to Chip_y2kuk

It doesn’t generally effect the spirometry numbers, but it alters the line of the graphs during each blow in quite a characteristic manner. I’ll see if I can find an example to show you and Katinka what I mean. I don’t think I’ve actually got copies of any of Bod’s that I can use.

Charlie_G profile image
Charlie_G in reply to Chip_y2kuk

Here’s what ‘normal’ good blows look like on graph for you to compare with the ones in my reply to Katinka. You get a slightly different overall shape to the curve with obstructive conditions, but the line should still be relatively smooth.

Normal flow curve graph for spirometry
Charlie_G profile image
Charlie_G in reply to Katinka46

So, as much as her (not good, arrogant) old consultant wanted it to be otherwise, my understanding is that in a clinic/ward using a pneumatic spirometer or a lab setting, it doesn’t generally impact the numbers, or the reliability of the numbers, because the mouthpiece effectively splints the airway open during the blows. It stops it from collapsing to an extent that airflow is reduced enough to reduce the values. What it does tend to do is produce some characteristic patterns on the graphs and flow volume loops that you don’t see otherwise.

You don’t necessarily see all of them in every patient, but the main features are a biphasic flow, which is where you get jags that are sort of like extra peaks as if you’ve inhaled a little partway through the blow; notches, which are rounded and much less clearly defined and distinct than a double peak, and then oscillations, which is where the graph line literally wobbles up and down rather than being a nice (mostly) smooth curve. The oscillations can be close together and sharp like the image, or can be curved and further spaced out. The graph produced when doing spirometry is airflow, so with the oscillations in particular, my understanding is that the wobble is demonstrating where the air flow during the exhale is varying as a result of the airway trying to/partially collapsing under pressure from the forced manoeuvre. I’ve attached some example spirometry graphs of those three features: with Bod, she usually has the biphasic flow and the oscillations, but not much in the way of notches. She also quite frequently has a double peak right at the start of her exhale. Although she fairly consistently hits the BTS criteria (at least three blows within 150ml of each other), even the good portable spirometers often incorrectly judge the blows unusable because of the patterns. They’re not unusable at all, it’s just under normal circumstances, in a patient without TBM, they would be bad blows - a double peak is often considered evidence of an inhale, which is why you want someone qualified conducting spirometry so that they recognise it’s not a double inhale, or a bad blow generally, but purely a result of underlying airway collapse. The first time her consultant here saw her spirometry printout, she immediately went ‘oh wow, look at that malacia’, and now most of the consultants always mention her ‘lovely wobbles’ whenever spirometry comes up for discussion 👀😂

It’s a bit of an aside, but the other thing we’ve discovered - you may remember me posting about it fairly early on during the pandemic - is that all of the turbine driven, handheld, home spirometers some respiratory units have started using to reduce the covid risk in clinic (by not doing lung function there), are unable to compensate for the graph lines, which does lead to inaccurate numbers with those devices. Whilst we haven’t proven it beyond all doubt, the best conclusion the best minds at the RBH and the manufacturers can come up with, is that the software required for the turbine technology to work is too clever for its own good. The distance beneath the graph line is the exhalation volume, so where the percent predicteds come from, and where you’ve got these really wobbly lines with oscillation, and notches, rather than smooth out the bumps (which is what pneumatic spirometers and formal lung function lab set ups do to get accurate values), the turbine handhelds include the wobbles in their measurements, resulting in significant over-reads. That’s why the handhelds were constantly saying she had an fev1 in excess of 85% when in reality, we knew she was in the high 60s at best. The same with her fvc; on one occasion it said she blew 132% when her highest ever on record is 109. I don’t know if I’ve explained that very well, but what I’m trying to say is that the spirometer uses the space below the graph line to work out the values. Where it’s not smooth in TBM and you’ve got all these bumps and wobbles, to get accurate spirometry, the better machines ignore the extra peaks and instead plot a line through the wobbling to get the correct value. The hand held turbine ones for use at home take the top of the peaks as the line, thus resulting in falsely highly readings. Does that make sense?

Anyway. Hope that helps, or is at least informative, and covers what you meant by weird readings? x

The three main features of TBM as seen in spirometry graphs
Katinka46 profile image
Katinka46 in reply to Charlie_G

Thanks…. I need to read all this again. I have a device I — occasionally — use at home. Two and a half years since the last PFT. Then spirometry after the last f-2-f consult in February. Hmmmm…. A lot to think aboutLove to you both

Kate xxx

My spirometry has "notches" in the line which are when the airflow increases momentarily as the airway collase snaps closed. That's my limited understanding of it anyway.

I also have a lot of problems with mucociliary clearance which is causing more damage to my lungs and making me prone to infections. I have a fairly intensive regime of airway clearance and nebulised meds, some of which are not used in the UK (I'm in Australia). In total, I spend about 5-6 hours a day on the neb. More when I'm actually sick. I use the Acapella device, Pari PEP-S attachment on some of my nebs and my bed adjusts to allow postural drainage sessions and FET (forced expiratory technique). Staying as healthy as possible sure is a pain in the ass!

Interestingly, my airway collapse is not limited to TBM. My sinuses also collapse when I blow my nose which causes problems in itself. Frequent sinus infections and discomfort. I find I can blow my nose far more effectively when I use technique similar to how people cough during FET. I went to ENTs for years complaining of this problem and was almost laughed at and treated like a hypochondriac and my spirometry abnormality and cough was blamed on everything from reflux, vocal cord dysfunction (which speech pathology repeatedly verified I do not have) and poor technique, a joke since I've been doing spirometry since I was too young to remember.

The biggest issue for anyone with a lung condition with TBM (or EDAC) is clearance. It just makes everything a lot worse and increases infection rates and duration as a result. Do you use something like a one way valve peak flow tube to splint during huffing/forced manoeuvres between cycles of physio? If not, you should, as it can make a big difference to actually get rubbish up in TBM. Any similar sized tube will do - we’ve used aerobika mouthpieces in a pinch. There is also a review paper that was published last year into airway clearance for those with TBM; there are no therapeutic guidelines at present, so the paper was written with a view to trying to educate on the issue and help standardised the respiratory physio approach based on past studies and clinical experience. It was co-written by one of the specialist physios at the hospital my daughter attends in London (the Royal Brompton, which is a specialist cardiac and respiratory hospital, that’s literally all they do). If you fancy a read of it:

openres.ersjournals.com/con...

As I mentioned in my original reply, the child is significantly hypermobile, which is likely the mechanism by which her tracheal cartilage is so floppy, and it also effects some of her other internal organs including the bowel. Her gastric emptying is so slow day to day that as a baby they thought she might have a malrotated stomach and need major surgery, and has been laxative dependent her entire life. Do you have any hypermobile joints? Even if you don’t, it may be that you have a predisposition to or an innate abnormality in your collagen production. That would be particularly likely if your TBM is congenital rather than acquired, and explain the sinus issues. Collagen is the most prevalent protein in the human body and quite literally everywhere.

I use a PEP mask during airway clearance which seals over my mouth and nose and only allows air out through a small hole creating positive pressure and opening airways. It's really useful.

I am flexible but I was a figure skater and dancer.

Charlie_G profile image
Charlie_G in reply to Katinka46

I should add that although we’ve identified the turbine tech as definitely being the issue in our case, and that it is almost certainly the result of Bod’s TBM, there haven’t been vast swathes of reports of abnormally/infeasibly high spirometry, even though acquired TBM is found in about 30% of adults with cf (which is the main patient group the NHS are using the turbine spirometers with). It may be that it correlates to the extent of the collapse a person has, or some other unidentified factor, and Bod’s TBM is congenital as a result of collagen issues, so that could also be relevant: rather than saying it’s universally useless in those with TBM, what I would say is that people with it should just be alert to the possibility that their spirometry using a turbine device could potentially be wonky and therefore not overly helpful for home monitoring. In our case it was immediately obvious because of her already relatively low fev1 - she hasn’t blown anything over 80% in 4 years and nothing over 74% in the last two, so when the first ever blow was something like 87% at a time when she wasn’t particularly well, we knew there was a problem.

Katinka46 profile image
Katinka46 in reply to Charlie_G

Thanks for all that. Hmmm.... Very interesting, I actually don't think I have TBM. I am not prone to infections, (whoops... that's a silly thing to say, isn't it?) and do not have congestion. my consultant is a specialist in adult CF so he might be too eager to spot it. It sounds from what you are saying that it will be common in that group. My spirometry oddity on the last spirometry, done after a consultation, was that my FVC has shrunk. It may just be blip, different practitioner, different equipment, unusual setting. But it did make me wonder if OB, which presents as an obstructive disease is — in my case — now developing into a restrictive disease? The scaring is extensive. And is worsening.

Hi there. I have tracheobronchomalacia. It can be treated with stents but I am too sick with other issues to survive the procedure so I am on 24/7 CPAP. My CPAP pressure is currently 12 and I have to wear the full face mask. This is unpleasant especially when going out. But it works for me. Without it my sats drop a lot and I struggle. It took a while to find the right pressure and the right mask. They are applying for funding for an actual ventilator (Resmed Astral) but this will take a long time to come through 🙄 I hope this helps. Successful treatment varies from person to person of course.

It is worth having the vaccine,if recommended

Chip_y2kuk profile image
Chip_y2kuk in reply to Patk1

I've got to have another as I had one when I was 14 but it looks like whatever happened my body didn't build an immunity

Patk1 profile image
Patk1 in reply to Chip_y2kuk

It may have built immunity/ or not, and waned over time.I have low titre response to it,which then wanes.

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