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Pineal Cyst: What symptoms led to your diagnosis?
Brain Tumor | Last Active: Sep 3, 2023 | Replies (40)Comment receiving replies
Hello @cmclafferty777, I would like to add my welcome along with @colleenyoung and others. I thought I would jump in for @colleenyoung and share a link to the article you mentioned.
-- Pineal Cysts: Worth a Second Look - Neurosurgeon identifies a novel constellation of symptoms that resolve upon excision of pineal cysts or cytomas:
https://muschealth.org/health-professionals/progressnotes/2018/yir/discovering/pineal-cysts
I know you are in great hands at Mayo but since you mentioned you aren't sure how your appointment with your daughter's neuro will go tomorrow, I'm wondering if you might find this site helpful to plan your conversation with the neuro -- https://patientrevolution.org/visit-tools.
Do you normally prepare questions ahead of time for appointments?
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Yes sir ! I've been managing my daughter's rare disorder for 25 years. 🙂 Difficult conversations aren't easy. I'm not sure how my appt will go because I don't know much about pineal cysts. Given the doctor is leaning towards functional movement disorder for my daughter, i'm not sure if a discussion on the pineal cyst will be welcomed or understood. I have a lot more research on this topic to complete.