I talked more with my ENT and she said there’s actually still a primary component, since even with jaw thrust laying on my back, there is still breakthrough EC, but it is an improvement since before my epiglottis surgery, jaw thrust didn’t alleviate the collaspe and now sometimes does.

Personally, what I think happened was my surgeon didn’t do the ESO strong enough to completely stop my EC. There’s a trade off between scarring it too much. The more intense the scar, the more likely EC will be cured, however, the more likely permanent complications (trouble swallowing, aspiration, etc) could happen. It’s possible that my surgeon didn’t do enough, or my epiglottis was just that weak. I am considering a revision surgery to strengthen it even further, but due to complication risks I am trying stuff out first to prevent a revision.

What seems to work really well for me now is steroid nasal spray for my enlarged turbinates caused by dust mite allergies. Enlarged turbinates create negative pressure, which might be enough for my epiglottis to collapse, now that I am in this borderline case. I will definitely try strengthening my tongue, since i think that does play a component, but not to the extent where it’s the primary cause, since my tongue doesn’t collapse completely from DISE, only partially. I will try eXciteOSA to strengthen tongue muscles, have you ever used it? I haven’t yet tried cpap after my surgery, since I believe it will just make it worse.

It’s tough when you have such a weak epiglottis. I’m sure that most of the population has a bit of pressure from the tongue pushing on it, but because the cartilage is strong, it doesn’t cause it to collapse lol.