← Return to Several inoperable paragangliomas, on lanreotide, now big mass

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @floridanana

I am glad to hear that you have an appointment at Mayo Clinic. This sounds complex and definitely needs the attention of NET specialists. Could you share what type of symptoms you were having that resulted in this diagnosis?

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Replies to "Hello @floridanana I am glad to hear that you have an appointment at Mayo Clinic. This..."

@hopeful33250 I’ve been serially scanned since my first tumor which was very large in 2001 and knocked out several cranial nerves. Had my first surgery with Dr. William Lawson (recently passed away) at Mt Sinai Medical Center in Manhattan, NY, wonderful man. Left glomus vagale. Was afraid to operated on second tumor in right carotid body. Switched my care to Dr. Jay Boyle at MSKCC also in Manhattan, NY, unfortuanately had a CVA post surgery and spent 2 weeks in telemetry until and 6 months on BP meds until my blood pressures equalized. The carotid bodies control blood pressures and the jostling of the area was enough to put me into baroreflex failure. Had many airway surgeries to help my swallowing deficits since then by Dr. Peak Woo, past head of Grabscheid Voice Center of Mt Sinai Medical Center, now in private practice on Upper West Side of Manhattan. The man is a genius. Last surgery was suppraglottoplasty during covid, as I still pool my secretions. Then over the next few years multiple tumors began growing again in my skill base and my mediastinum, told me all inoperable.