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Pineal Cyst: What symptoms led to your diagnosis?

Brain Tumor | Last Active: Oct 30 3:42pm | Replies (45)

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@saphira

Hey everyone,
Thanks for sharing you stories - it is interesting and insightful to hear how other people are dealing with pineal cysts. I am just gonna add my story to the mix:
I got sick with virus (may or may not have been Covid) last October (2022). I had a pretty sore throat, lots of phlegm in the throat and sinus for two days, then things started easing off. I thought I was good not too long after that. However, here and there the sore throat and sinus issues came back, and out of a sudden I noticed that my field of vision wasn’t stable anymore. I felt as if my pupils in my eyes were moving slightly left to right and back all the time. Sometimes that movement changed to up and down, or around in a circle. Focusing and concentrating became very hard, and the more I tried the more I felt pressure in my sinus and forehead (kind of like brain fog), making focusing even harder. I went to the doctor and after some basic examinations regarding the slight vertigo, he suspected vestibular neuritis, which is the irritation of the vestibular nerven often happening after a virus infection. It definitely seemed/seems to fit. For this condition, all it takes is time…but it can be lots of time. I still do have the vertigo symptoms to this date, still sometimes with pressure in the head.
To rule more severe conditions out, the doctor ordered and MRI of my brain. Just last week the results came back - 1.6 cm pineal cyst, exerting some pressure on the tectum with subjective narrowing of the cerebral aqueduct. The doctor referred me to a brain specialist and now I am waiting to hear back…no idea how long that will take.
From what the doctor told me and what I read here and other places, my cyst is a considerable size. I read that over 1.5 cm symptoms like the ones I experience can occur. What are your thoughts? Probability that vestibular neuritis is the cause vs the cyst vs something else?
Above everything I find the slight vertigo symptoms just absolutely annoying and frustrating - I know they could be worse and I am grateful that they aren’t but I constantly feel off balance. Knowing now that there is a pretty big cyst in my brain doesn’t make things better. Definitely kinda scary. Anyways, I hope I hear back from that brain specialist sooner than later with more answers than questions. I just don’t quite know what I should be doing in the mean time to somehow get rid of these symptoms…

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Replies to "Hey everyone, Thanks for sharing you stories - it is interesting and insightful to hear how..."

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?