Pineal cyst- Do my symptoms match or something else?

Posted by mqj @mqj, 22 hours ago

I have a 2.4 cyst. My symptoms are 3 levels of vision change in a year, optic nerve thinning/pressure, PVD eye, and tinnitus in the left ear. I have had high pressures 4 times in the last year. There have been a handful of times in the last year I have felt unsteady or like the room shifted (actually twice today). I have also been diagnosed with fibromyalgia, diabetes, and arthritis in the last year.
The neuro-ophthalmologist sent me to a neurosurgeon at the same university. I'm scheduled for a second opinion at MUSC next month.
But I am wondering if anyone has similar symptoms with pineal cyst or if I should be looking at something else as a cause. Any thoughts are welcom.

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Teresa, Volunteer Mentor | @hopeful33250 | 21 hours ago

Hello @mqj and welcome to Mayo Connect. I'm glad to see that you are advocating for yourself and want to learn as much as possible about this diagnosis.

I'm tagging a few members who have experience with pineal gland cysts like @shermancrew @non242021 @summer0828 @brainfog66.

You might also appreciate the posts in this related discussion:
- Pineal Cyst: What symptoms led to your diagnosis?: https://connect.mayoclinic.org/discussion/pineal-cyst/

You said that your doctor referred you to a neurosurgeon at the same university. I was wondering what information you gained from that appointment.

I look forward to hearing from you again as you seek the best treatment options.

mqj | @mqj | 20 hours ago

Well, the nuerosurgeon thought I should go back to nuero-opthamology and consider IIH. Neuro-opthamologist said that there was no way it was idiopathic, intracranial hypertension. So i guess I'm glad we scheduled a second opinion at MUSC