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Pineal Cyst: What symptoms led to your diagnosis?

Brain Tumor | Last Active: Sep 3, 2023 | Replies (40)

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@amandajro

Hello @saphira and welcome to Mayo Clinic Connect. Thank you for sharing your story and journey with your diagnosis. I am sure you are hoping for a quick response from your doctor, which is understandable.

I think in the meantime, the wait following a diagnosis and before a treatment plan is always a difficult time because it is human nature to want to move in the direction of action. Perhaps in this interim, you might be able to take some time for self-care and also just time to let it all soak in before the next phase of your journey. If action feels better, perhaps you craft a list of questions for your follow up appointment?

Members such as @passerby and @jeep may be able to come in and share what they felt was beneficial for them.

What sort of support from other members would be most helpful?

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Replies to "Hello @saphira and welcome to Mayo Clinic Connect. Thank you for sharing your story and journey..."

Thanks a lot for the kind and comforting words, @amandajro
At the moment I am trying to ignore the symptoms as much as possible and just enjoy myself. Doesn’t always work but I keep trying 😀 today the symptoms were worse, giving me a heavy head, somewhat like brain fog. Because I didn’t expect that diagnosis when I saw the doctor last, I totally forgot to ask at which urgency the referral to the brain specialist was sent out. If I don’t hear back next week, which I don’t expect I will, I will go back to the doctor next Friday. I think what would be helpful to hear from others are two things: what tests/examinations have you done firstly to explore the cyst more, but secondly to rule out other causes of your symptoms? And the other thing is, do you know whether balance exercises help to deal with vestibular issues? When I had a concussion a number of years ago, I was shown balance exercises to help re-calibrate the brain. I am wondering whether those can be effective at all if the cause of vestibular issues is the cyst. I will for sure make a list of questions to ask the doctor next time I see him, and those questions will also be on there. Thank you, y’all. Hanging in there… 🙂