Thank you for sharing your experience. My 6 years old has many symptoms and we were lucky to find a neurosurgeon that take his symptoms seriously. His cyst is in the pineal region, measuring 4.6cm x 3.7cm x 2.5cm. The length of the cyst goes from 3rd ventricle to the 4th ventricle. Pressure on the pineal gland and cerebellum displaced. The neurologist said is just a cyst incidental findings, the neurosurgeon said he needs surgery straightaway sooner than later.

Thank you for voicing my symptoms. My MRI brain revealed a "cyst" a year ago. Neuro said its nothing to be concerned about. I wont stop advocating. Thank you

My finding was in 2019. A incidental finding. What was 7mm. Followed up with a neurologist. He said it wasn’t serious, but we’ll watch it. Had another MRI in 2020 still there. Your issues are just like me, wow…

Hi! Thanks so much for sharing your story. My daughter just turned 8 in March but all her symptoms started in September last year (at least that she finally was old enough to recognize and voice). Her symptoms started with just saying her vision was blurry which led to 3 normal visual exams. About a month later she had sudden onset of severe pain in the middle of her right eye with an episode of of dizziness where she couldn’t walk straight. This led us to visits with 3 different ophthalmologists. Aside from some convergence insufficiency and minimal exophoria in her right eye there are no other explanations to her symptoms. She has headaches daily, mainly around her right eye. Her main issue right now is the monocular diplopia she has in both eyes without any explanation. We saw neurology who felt this was all “functional” but ordered a quick scan to bridge the gap in Jan. 2024 which revealed 1.4cm pineal cyst causing a mild mass effect on the tectum plate. Thankfully, she referred us to Dr. Infinger (Dr. Patels counterpart in peds) who ordered a full scan of her brain and orbits. This was 4 weeks after the quick scan. There was no change on that MRI. Since this scan, she is now having more episodes of severe pain in her right eye where she can’t open it, sensitivity to loud sounds and light, another episode of ataxia at school where she could not walk straight and was dizzy, and worsening dreams where she will wake up and walking around, do gymnastics, try to catch bugs, etc and have zero recollection of these. We are scheduled June 10th for another MRI to see if the pineal cyst has grown or if her symptoms have worsened and if so which I can confidently say her symptoms have worsened Dr. Infinger feels it’s reasonable to consider taking it out. One of our biggest concerns is whether or not the surgery will improve or better yet restore her vision but I’m still will to take the chance that it might not. She also was riding her scooter earlier this month and although I wasn’t with her she hit the curb causing her to fall and fracture her arm. We get that cast off Tuesday!! Regardless, I feel that was all due to her double vision and depth perception. Thanks so much for all this info bc navigating through the medical system to get the right people we thankfully have now has been challenging. Especially for a worried momma who is in healthcare herself and trying to stay in the “mom” role and not try to be “mom and clinician”! 😊

Prayers for you and I hope you get completely well.

Your initial er visit sounds just like mine. Inwent to my pcp for what I thought was a migraine, she said that's what it was. if it didn't get better with the treatment, l should go to the er. They did a CT and found the cyst. Did an mri. Said it was an incidental finding and not the cause of my symptoms. The symptoms were because of a migraine. I accepted it, but decided to do my our research of the cyst. I found you, and now I am pursuing treatment.

My daughter had a grand mal seizure and then they discovered a pineal cyst 9.5 mm and she's having issues still

Thanks my Wife has just been diagnosed with a tumour in the pineal gland we have limited information her eye tests come back as normal we are awaiting further tests and information

You are an awesome woman of God.

My daughter is going through this exact thing right now.

Hi !! I was admitted into the hospital after I notified my doctor that I was having double vision . They said I may be having a stroke and to go to the emergency room/hospital . They rushed me in and did many tests on me including CT scan . They kept me admitted as they wanted to do more tests . I had an MRI and it showed a pineal cyst , 1.6 cm in size. I've been having fatigue and pain in my eyes for along while and now the double vision. I'm going to be referred to a neurosurgeon as soon as I visit my doctor in a few days . Really scared about it . I heard they go through your nose, into the brain. Can you please tell me a little more about the surgery as I think that is what they may recommened me to have to do . Are there risks ? Is it safe ? Were you afraid ? Still have to see the surgeon though to see what they will recommend . Having trouble with my vision and so very tired and it is so hard to go about my day and accomplish the things that need to be done. Thank you so much for posting your video 😊💖 . Happy I found it .

My left eye is worse also. Getting double vision now.

I'm so scared because they found mines two weeks ago in a ct scan I've just don't know how to feel about it all.

Subscribed as well and binge watching!

I had MRI few weeks ago due to brain fog, depth perception problems, instability on legs at times, behavior cjanges and forgetfulness. They found a pinel cyst 6mm and a small one on my sinuses. I am being told this is a common finding and not to follow up on Pinel cyst. Should I insist on seeing a Dr. About this... because my symptoms might be related? Being only 6 mm I am told it will not cause symptoms. I too get headaches behind my eye amd have non stop tingling in my fingertips. Told that I have bulging disc in my back...so I assumed it was gtom that. But not hearing you had that symptom I'm not so sure. Advice?

Hi I have pineal gland cyst ..what to do ..no sleep migraine headache and eye pressure ...depression..what to do..quickly reply..i have 18 years in migrane headache

Hello I got diagnosed with a pineal gland cyst I wanna say two months ago but I’ve been experiencing chronic headaches for about two years now. Did you notice a change in your brain structure im not sure if my head was like this when I was younger but there are two bumps behind my ear but they’re hard like my bone so I’m asking did you notice a change in ur skull structure ?

My wife her pineal cyst 15.6 mm and she has very bad symptoms

Hi! First time searching for discussions on this as my MRI says mine is 7mm. The neurologist said there is no cause for concern. And yet I have Always had issues sleeping, and headaches/migraines since I was a teenager. So my question for you is- what size was the cyst the first CT? Thank you!

Subscribed!

Mine was malignant

What size was you cyst?

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