I’ve been dealing with PGL1 for over 25 years - had multiple surgeries and had been followed by hospitals in NY. Fast forward to right before covid and we relocated to South Florida. Tumors started growing again, hooked up with U of Miami Health Center, great academic center, great providers, these tumors are inoperable, had radiation, on lanreotide injections one a month, had explosion in size of mediastinal mass within last month. Biopsy inconclusive in that my mass is unreachable, nodes next to lungs showed sarcoid-like granulomas yet no evidence of sarcoidosis in other testing modalities. Beyond what U of Miami is able to figure out/has experience so wrote referral to Mayo as I’m symptomatic. Mass is leaning on my trachea and vessels and impinging already reconstructed airway from glomus vagale surgery and subsequent cranial nerve damage in 2001.