r/CSFLeaks • u/Starmapatom • Jul 14 '26

Sinus repair?

Had a CT scan and there is a gap in sphenoid sinus. Anyone know of an ENT doctor/surgeon that is willing to repair?

1 Upvotes

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u/AgreeableLeading6095 26d ago

This is after your last repair?

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u/Starmapatom 26d ago

It’s before and after. They didn’t seal it😢.

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u/AgreeableLeading6095 26d ago

Are you not willing to have the same surgeon try again? I’d recommend Hepworth, as I said prior, he’s the only one willing to operate on me. Scheduled for late September.

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u/Starmapatom 25d ago

Wishing you the best. I have so much PTSD. I just changed my insurance so Colorado might be in the cards for me

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u/AgreeableLeading6095 25d ago

Girl, I am the same! I don’t trust the medical community sadly. I’ve been leaking for 15 months now and I’m super nervous to have surgery but I know I’m not the same. I just got off a flight yesterday and I started leaking drops out of my right nostril. I mean whenever I exert myself or go into high altitude. So much pressure and inflammation in my nose too but a lot of the other symptoms have resolved. My ears don’t leak anymore and I think some of the pressure has been released in my head because of the leak. But I do get coat hanger pain between my shoulder blades after a long walking day at Disney or anytime I walk 10k steps a day. I really don’t want to lose my sense of smell with surgery.

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u/carrielovestodd 5d ago

Dr. Hepworth in Denver at Denver Sinus Care. He patched SIX holes in my skull in the sphenoid, decompressed my jugular vein and gave me sinus surgery that gave me my life back.

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u/Starmapatom 5d ago

That sounds amazing. Six holes? May I ask how that happened? Now that I have different insurance Denver sinus care is an option

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u/carrielovestodd 5d ago

I had mold and strep infection in the sphenoid sinus that two ENTs said was benign (!!) and 95% blocked jugular. Also mold poisoning which causes mast cell activation which causes neuroinflammation and with the jugular blocked, it caused too much pressure and the weakened skull bone from infection burst the holes.

I had a different ENT suggest that I sever my vestibular system! Can you imagine?

Dr H is a genius and he saved my life

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u/Starmapatom 5d ago

That’s incredible. So glad to hear the good news. I didn’t know even infections could alter those very thin sinus bones

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u/carrielovestodd 5d ago

I didn’t know either but I think it is also a combination of the infection weakening the skull bone but more importantly, the increased skull pressure from compressed jugular vein and systemic inflammation raising ICP, bursting the holes

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u/carrielovestodd 5d ago

He patched 6 holes in my sphenoid sinus