OMFS Consult Friday (advice needed)

[carti19]

I have my OMFS consult this Friday at Mount Sinai. This feels like judgement day for me — either I finally get surgery and a path forward, or I keep rotting

Quick background:

23 y/o, years of health decline.

• Floppy eyelids (rest on lashes, eyes sealed shut every morning, can’t clean properly, vision constantly obstructed).
• Juvenile cataract already in right eye, left eye also feels floppy and unstable. Basically adapted to seeing out of one eye.
• Facial tissue degradation — up close it looks uncanny, tissue feels unhealthy, hair growth pattern messed up.
• TMJ cracking and strain when chewing, constant facial pressure.
• Shallow nose breathing, deviated septum + nasal polyp, chronic post-nasal drip.
• POTS-type symptoms (fatigue, cold extremities, low circulation). Exercise drains me completely. Have a scar under my chin fainting onto pavement upon standing up.
• Never wake up rested, constant brain fog.
• MRI: deviated septum, right mastoid effusion, sinus retention cyst/polyp, low-lying cerebellar tonsil.

I’ve already been dismissed by rheum, cardio, ENT, derm, allergist. On Dupixent, no improvement. Pulmonologist has me waiting for sleep study.

Main concerns:

• I’m functionally impaired every day — can’t see properly, can’t breathe properly, can’t sleep properly. This isn’t cosmetic, it’s survival.
• Surgery (eyelids + possibly other corrections) is the only way I see to return to a baseline. Even if I have EDS or connective tissue disease, that won’t change — but surgery would at least stop the rotting and give me a shot at ascension.
• I’m worried the resident will brush me off with “you still have one good eye” or “you’re too young.” I can’t wait anymore.

Has anyone here gone through OMFS/oculoplastic consults with similar functional + aesthetic overlap? What’s the best way to frame my case so I don’t get dismissed? Any advice for making sure the attending comes in if the resident tries to downplay it? This feels like my last straw before the abyss. Any support or experiences would mean a lot.

 

[knownslayer687]

We got the same problems wt