Excessive dynamic airway collapse

[Quinny11]

I have been diagnosed with excessive dynamic airway collapse on exhalation and also vocal cord dysfunction on exhalation my pulmonary function test shows mild restriction.

Is anybody out there living with this?how do you cope? I've been told to exercise but I get so scared and anxious. I can't find very much information on these particular conditions

[Hidden]

Hi quinny. Didn't whoever diagnosed you give you any information? If not, that's terrible. I haven't heard of it, but is it similar to tracheobronchomalacia? There's someone on the Asthma UK forum who has that.

[Laddieday in reply to Hidden]

What is tracheobrinchomalacia

[mrsmummy in reply to Laddieday]

Tracheobronchomalacia or TBM is a condition characterized by flaccidity of the tracheal support cartilage which leads to tracheal collapse. This condition can also affect the bronchi.

[Quinny11]

Hi I got some information and am using cpap at the moment. It's similar to trachealmalica except my trachea collapses in the back.

[Northern-soul]

Hi, I have been diagnosed with Tracheomalacia, which can also be termed as excessive dynamic airway collapse. I was diagnosed at bronchoscopy a couple of years ago. This condition results in extreme breathlessness on exertion, any exertion.

My trachea collapses in on itself greater than 90% on expiration. The problem is a structural one with the trachea and in some cases includes the bronchi as well and no amount of exercise will help 'strengthen' the cartilage that has gone floppy. I have been using CPAP for some time now which helps considerably, however this does take some getting used to!

I do not have VCD.

If you wish to discuss further please pm me, I will be happy to help if I can.

Good luck xx

[Quinny11 in reply to Northern-soul]

Thankyou, my collapse is 80 percent , from what I understand the lung dr said mine involves the muscle in the back of the trachea not the cartilage

I use the cpap at level 7 overnight and during the day when I get bad symptoms I don't find much relief

I'm also currently tapering of long term use of prednisone from when they thought it was a king issue, which is very hard.

The dr has said with weight loss and coming of the pred the collapsing may improve

[ONYM in reply to Quinny11]

Hey Quinny11, was diagnosed with subglottic tracheomalacia earlier this year and would love to chat about this further. Currently on Pari-PEP for this at the moment with azithromycin antibiotic added in from September.

[Michowls2 in reply to Northern-soul]

I have just been diagnosed with this and would like some info please

[ONYM in reply to Michowls2]

Hi! I got a diagnosis of subglottic tracheomalacia earlier this year and would love to chat to others about their experiences of the condition and share what I find out from my own journey. X

[evaparodi in reply to Northern-soul]

Can you please let me know what CPAP is?

[Northern-soul in reply to evaparodi]

CPAP is short for continuous positive airway pressure. It basically is a machine which forces air into the airway under pressure via a mask and tubing. The effect of the pressure acts as a splint to keep the airway open in people who have Tracheomalacia and tracheobronchomalacia. It is also used for people who have sleep apnoea

[ONYM in reply to Northern-soul]

Hi Northern-soul, I got diagnosed with subglottic tracheomalacia earlier this year after a bronchoscopy and would love to just be able to chat to someone else with tracheomalacia. I'm currently on Pari-PEP 7% saline and they're still trying to figure out what the best treatment plan is for the medium-term. I'd also love to raise awareness of this condition, particularly as my symptoms have previously been misrecognised as solely down to asthma (I'm sure I'm not the only one with those experiences). Do you know of any patient groups or anything else that'd be useful to read? X

[Northern-soul in reply to ONYM]

Hi, I am happy to talk to you about this. Please PM me