Tracheomalacia

[andyb52]

Was diagnosed with tracheomalacia 2 yrs ago is cpap therapy a treatment for it haven't had any long flare ups until recently. I've now been coughing for 2 weeks straight. Can't lay down at all try to sleep sitting up

[Julie]

Cpap has been used for it, but especially in adults, there could be aspects you need to first talk to your MDs about, and not self diagnose or treat. Though if you've been coughing so long... have you had a Covid test? I wouldn't assume anything about anything yet.

[andyb52]

Yes have had covid test and been vaccinations ive had this problem all my life I'd have coughing fits and pheamonia almost every yr it usually last 1 to 3 weeks. 2 yrs ago it went on for three months that when they went in and said I had tracheomalacia been doing okay just minor coughing. But now it seems to be back going into my 3rd week of coughing. I dont want to have surgery until its the absolute last choice so I was wondering if anyone with this condition has had any success with other therapy like cpap

[Julie]

Is there any reason your doctor says you shouldn't try Cpap? Even if numbers (after testing) don't add up to your needing it in the same way those with proven apnea do, if a trial makes you more comfortable, there shouldn't be a reason not to use it, probably at a low level, unless the doctor (or preferably sleep specialist) does give you a good one. I can't remember, after many yrs of being here, if this has come up before, but that's not a reason to not look into it. A problem could be that cpap is meant to be used (and is spec. designed for) only sleep, and if that's all you have in mind to use it for, again it could be ok depending on doc's approval.

[andyb52]

No ive herd it can be used im going in next week to discuss it with him I already know insurance won't pay for it so with the machine and the test im look n between 4 to 7 thousands dollars so i was am looking for stories of success or failure before I drop that much money that I don't really have its to the point that im gonna have to do something

[Miss Emerita]

You might want to look at this article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5227206/

What I take away from it is that stenting is not a long-term treatment measure, but it can help determine whether you would benefit from surgery. A stent is something that holds a passageway open. The stenting used for this diagnostic purpose is usually metallic or plastic, but it's possible it could be pneumatic, meaning stenting via air pressure generated by a CPAP machine or some other similar device.

I wonder whether the insurance would cover CPAP for a relatively short-term diagnostic use, as opposed to a therapeutic use. It'd be worth trying to find out. But it's also well worth asking the doctor about diagnostic stenting with metallic or plastic stents. You can emphasize that you know these aren't permanent fixes but are ways to figure out whether you'd benefit from surgery to firm up your trachea.

I hope your discussion with the doctor will focus on the steps he can take toward providing you with a surgical fix. If he doesn't have the expertise to discuss this with you, please ask for a referral to someone who does. For important conversations with doctors, it can often help to write your questions down ahead of time and bring along a friend or family member who can make sure the doctor has answered your questions and maybe take a few notes to help you recall what the doctor said.

Best of luck.

[Julie]

Funny, I don't remember him saying anything about not understanding or remembering what the doctors said.

[Miss Emerita]

Right you are, Julie. I just remember benefiting when someone recommend that to me, but maybe it's not appropriate here.

[Julie]

Sorry... I've said similar things here myself and seen others do it, but this just struck me a bit off tonight, though it wasn't a bad suggestion otherwise.

[squid13]

I think before I dropped 4 to 7 grand I'd buy a used cpap machine( Craigslist) and give it a try, but that's just me.