Pineal Cyst: What symptoms led to your diagnosis?

@tiredofthebs, if you would like to seek a second opinion with Mayo Clinic specialists, please find out how you can self-refer here: http://mayocl.in/1mtmR63

I don't know where to go or seek help. The main stream medical system is a joke. They don't even know what the pineal gland does, they just think it's for sleeping. So it's apparent that these individuals that I have come across try to help me think that because of the size it still isn't a concern and they don't think that it has anything to do with my symptoms because they say it's not pressing on anything so if you have a 9 mm cyst in your brain and it's a fluid filled with liquid I don't even know what you don't feel good you have no energy your eyes got light sensitivity your tinnitus is going nuts you're getting audio visual disturbances to where you close your eyes and you see strobe lights I had vertigo and everybody just thinks that I'm insane. Because of this I have lost my ability to have gainful employment as I don't know how I'm going to feel one day to the next. I guess they just want to label me as crazy and put me in a little neat box so they can sleep soundly at night. They don't know what it's like to be in my head I don't want to get the surgery done I don't want anyone to drill into my head believe me that's the last thing I want but I'm so desperate at this point to find some kind of relief because I haven't found it in anything I spent thousands of dollars thousands of dollars on supplements on different things to try to help me feel better I have seen countless other doctors I've seen therapists I've done everything under the sun you name it you name it I've done it to try to alleviate my symptoms and nothing is worked nothing and these doctors and these support staff just want to label me as crazy because they don't understand and they're not specialized in this area and they don't even want to give me a recommendation out the game is rigged God bless our veterans

I have a 9mm pineal cyst.

It grew since last year 2mm from 7mm. The neurosurgeon says I'm OK and that basically it's my ptsd as I am a veteran and I laughed . If I was a cheerleader and 16 and just experienced headaches, I would be taken more seriously.

I have a plethora of symptoms. Tinnitus has been insane for I don't know how long now, it's getting worse. Light sensitivity can't sleep, adhd, cant concentrate , visual disturbances , migraines and if it gets really bad I have small seizures it feels like, etc.

University of Pennsylvania I was working with Dr O.

Needless to say his staff were awful at getting back to me. Unprofessional. Disrespectful. No wonder our veterans are killing themselves 22 a day. You ask for help, they say your lying .

I was diagnosed in 2014 with a 7mm cyst. Now it's 9mm. And the doctor I saw last year would have don't the surgery if it grew 2 more mms .

Apparently it did with this 2nd opinion. And yet still, their staff tell me it's caused by my ptsd and I need psychiatric help ... the pa even offered to set up consults with a shrink to lobotomize me with their crap pills. I tried everything. And so long story short, don't go to Philly for crap as I feel I am being discriminated against bc I'm a white female combat veteran. I patiently waited over 6 weeks for them to review my mri scans .

@jeep thanks for sharing this experience 🌼 I’m experiencing a lot of your same symptoms but I don’t know if the dyskinesia and hemorrhagic gastritis may be part of the cysts I have in my 🧠 (plus arachnoid cyst on top cerebellum).

May I ask what size is it or was? Did you had any other cysts in brain or body?

Did surgery was ever considered?

Any feedback would be greatly appreciated 🙏🏻 blessings of healing 🌼

Hello 👋🏻 I just need to talk. How everyone is feeling?
I found out that I have a pineal cyst in the brain 🧠 I’m lil concerned. Hope everyone gets the help that you need 🙏🏻 blessings for healing ❤️‍🩹 🌼

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.

Thank you ! I was curious if your symptoms were consistent or did they wax and wane?

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?

Welcome @cmclafferty777 and to your daughter. You are in good hands at Mayo Clinic. I hope you get answers at your upcoming appointment.

Please keep me posted @colleenyoung because we are presently at Mayo with my daughter Shannon who has an underlying paraneoplastic syndrome. Her recent symptoms since April 22 are not from underlying condition per her Boston specialist and Mayo docs. Symptoms, vomiting on/off for a few weeks, balance, gait, speech, movements that resemble parkinsons, tremors and myoclonus. Docs here are looking at functional neuro disorder. However, we just received MRI w contrast results and she has a small pineal cyst. I read this article and a lot of simalarities to my daughter's symptoms. The article calls out that neurologists are trained to dismiss these cysts so I don't know how my appt with neuro will go tomorrow. Here is the link to the article that was interesting by a doc in SC that began removing even small cysts. Since i'm new here i can't post any links ... google "pineal cysts worth a second look"
by medical university of south carolina Sunil J. Patel, M.D. this was from 2018,