EDAC

[Shrimpy-13-22-25]

Hi everyone, do any of you suffer from excessive dynamic airway collapse? If so, what help are you getting?

[Hidden]

EDAC is a subset of tracheobronchomalacia that’s specifically caused by atrophy in the posterior wall of the trachea rather than it just being universally floppy, and unfortunately, as with all TBM, there isn’t a lot that can be done for it. If really severe, there is a surgical stenting possibility, but the surgery is fairly rarely done as it’s not without its own issues. In moderate to severe cases, CPAP can be useful, but it does to some extent depend on the nature of the issues it’s causing you. What sort of symptoms are you getting with it? Do you know what the cause is i.e. do they think it’s secondary to another illness like COPD or reflux? My daughter has moderate, primary (congenital) TBM, and although it caused fairly significant problems when she was a baby, the biggest issue for her these days is actually the impact on managing her underlying lung disease: any kind of TBM results in some degree of tracheal collapse when the trachea is put under pressure, such as by forced exhalation, huffing and coughing, so if you also have a productive lung disease like bronchiectasis, managing that requires appropriate physio techniques that minimise the effects of the collapse. Essentially, it’s about using techniques that splint the airway open and better facilitate clearance as a result. This is usually physio utilising positive expiratory pressure (PEP) such as a pep mask or OPEP device like an aerobika, acapella, or flutter. Because people with any form of TBM can’t clear as effectively, they quite often have a higher incidence of infections, so finding the most effective technique as possible for each patient is paramount.

[Shrimpy-13-22-25 in reply to Hidden]

Thanks Charlie-G. I have chronic asthma, bronchiectasis and EDAC. I have tried CPAP but by the time a correct fitting mask was sorted the manufacturer had changed the strap material which caused rashes. The cartilage is gradually getting weaker, and the last bronchoscopy showed at least 50% closer when coughing etc. I’ve never seen a specialist, if fact I’ve never seen any respiratory consultant for 2 years, and one telephone conversation where the doctor was very upset by not being able to see his patients and felt it was time to retire earlier this year. The Trust I come under has a backlog of 500 patients, growing all the while, as doctors refer new patients. I have tried to get some sort of time scale to when I would be due to be seen, basically the response I received from the Trusts lead clinician is that I will have to wait for the my appointment in chronological order as not deemed urgent, and still no indication if when. Recently I have had a lung X-ray that has shown other problems and the consultant wishes to see me to discuss these problems. My surgery is going to chase it up, and has also arranged for a respiratory nurse to telephone me.So, if anyone knows of a consultant that is able to help with asthma, bronchiectasis or EDAC I would be grateful for their name and contact details.

Breathe well everyone.

[Hidden in reply to Shrimpy-13-22-25]

If you live in England, you have the right to request a referral to any consultant/hospital of your choice in the country. It’s legally enshrined, and with a diagnosis of bronchiectasis alone, a general respiratory consultant is not what you need - most members with ncfbe here would tell you that general resp know about as much as a GP does with regards to appropriate treatment and managing the condition. Which is to say, very little. The EDAC/TBM is most often something you just live with wherever possible even under highly specialist care like my daughter has, but a specialist will be better placed to understand the implications of it on your bronchiectasis and treatment. If you’re not getting the right care there, and it’s leading to more infections/more intense symptoms, then that won’t be helping the EDAC. A specialist would also be better placed to seek input should it be decided that it’s appropriate to look at other options like stenting in the future, although collapse of between 50 and 75% is defined as mild. Other than CPAP, if you’re really symptomatic and struggling, NIPPV is an alternative: I don’t know, but there may be different options available for the mask strapping compared to CPAP?

We can’t name or recommend doctors directly via the forum (other than in private messages), but bronch specialists are often found at large teaching hospitals. Hospitals with cystic fibrosis units are also always a very good bet for finding respiratory doctors with excellent understanding of bronchiectasis, as it’s part and parcel of the lung damage in cf. About 30% of adult patients with cf also go on to acquire TBM, so they tend to have pretty good understanding there, too. There’s a full list of hospitals that are designated as tertiary cf centres available via the cf trust website.

[Bkin]

Good morning and Welcome Shrimpy.

I don't have the experience of this myself but I would say the treatment would depend what country you are residing in and also if this is co morbid with COPD or other.

You may be interested in reading a couple of UK links below:

From British medical journal : thorax.bmj.com/content/67/1/95

NHS Health Research: hra.nhs.uk/planning-and-imp...

Another pdf download on

Excessive dynamic airway collapse (EDAC) - CORE core.ac.uk

you may need to copy paste the CORE reference.

I hope you can get the treatment that helps.

Again if you are in the UK you may want to chat with BLF helpline they may have some links and reference to this.

blf.org.uk/support-for-you/...

Best wishes BK