← Return to Has anyone else been diagnosed with an endolymphatic sac tumor?

Discussion
Comment receiving replies
@kanaazpereira

Hi @kayjaylauren, and welcome to Connect. Although I couldn’t find members who’ve discussed this exact condition, I’d like to connect you with others who may be going through something similar.

@astro3 asks some pertinent questions in this discussion:
– Anyone have skull reconstruction surgery due2 hollowing? or temporal muscle reattached
https://connect.mayoclinic.org/discussion/anyone-have-skull-reconstruction-surgery-due2-hollowing-or-temporal-muscle-reattached/
@philthomas share his experience here:
– Is anyone recovering from brain surgery related to hemangioblastoma?
https://connect.mayoclinic.org/discussion/is-anyone-recovering-from-brain-surgery-related-to-hemangioblastoma/

I’m also tagging @jentalleysoares @kkkk @htinlizzy @sarasally2 @saucy @dd300 @dlmassot, and you can read their and other members’ posts in this discussion on acoustic neuroma:
https://connect.mayoclinic.org/discussion/my-name-is-tracy-daley-i-live-in-omaha-nebraska-my-diagnosis/

You may be interested in these archived Video Q&A sessions about brain tumors with Mayo experts from both campuses:
– #MayoClinicNeuroChat on Acoustic Neuromas https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-acoustic-neuromas-with-drs-bendok-weisskopf/?
– #MayoClinicNeuroChat about Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-about-brain-tumors-2/

@kayjaylauren, do you know if you will need post-operative radiation?

Jump to this post


Replies to "Hi @kayjaylauren, and welcome to Connect. Although I couldn’t find members who’ve discussed this exact condition,..."

Hi @kanaazpereira, thanks for this info! I wish there was someone out there with the same tumor to connect with! But I know it’s so rare, I’ve researched similar skull base tumors before specifically acoustic neuromas and Dr Bendok and Dr Weisskopf will actually be performing my surgery next month! I’m not sure if I will need radiation but I’ve already met the radiation team and Dr just in case! Once again thanks for this information and reaching out!