I have a Pineal cyst and it's connected to my spinal cord

Posted by gsu @gsu, Dec 10, 2023

I don't really understand my Pineal cyst much, I was diagnosed when I was 3, I had severe headaches and other problems, I also have migraine equivalent syndrome and orthostatic hypotension, on top of that I also have horrible vision and a astigmatism. When I was about ten I found out I had my tumor and all my other problems as that's also when I got my glasses, I was kept in the dark for years and when I found out I finally realized why nobody understood my pain in my head, I've been walking on eggshells evanescence I found out. It hurts to run because it feels like my head is going to explode. I can't jump properly for the same reason, and the Pineal cyst is connected to my spinal cord at that! I don't really know the differences because no doctor will answer my questions sense Im young, nobody thinks I can comprehend what they say about it but I want to learn about it and what it does and if theirs a way to help me without big medications and pills/ surgery, if theirs a way to at least help with the migraine and the headaches. I know this is super long and nobody's going to read it but I want answers and simple and complex websites can't give me I need to hear it from someone (not physically here it but you get my point) I also want their to be more awareness for brain tumors.
Sory this was long and probably hard to read as I was typing fast but thank you for reading 🙂

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Colleen Young, Connect Director | @colleenyoung | Dec 15, 2023

Hi @gsu, it sounds like learning at 10 years old that you'd been living with a pineal cyst for pretty much all your life helped to finally make sense of the headaches and pain you were experiencing that other kids didn't have.

I'm tagging fellow members like @saphira @passerby @jeep @acpipes @susanaz @purpleturtle who also have experience with pineal cysts.

It's frustrating to feel like the doctors aren't explaining things openly with you because they think you won't understand or that you're too young. I say, keep asking questions. And as you get answers, keep asking more questions that the answers unviel. With a lifelong chronic condition, you are the most invested member on Team GSU. Soon the rest of team will recognize you as the CEO. 🙂

I think that you're on to something. You want to understand the positioning of your cyst and how it affects your headaches. You want to learn how you can avoid pain and/or get treatment that would eliminate or reduce the pain or frequency. Have I got that right so far?

What activities do you find (in addition to jumping) that trigger the headaches? Do you keep a journal to discover when, why and how often you have unwanted symptoms?

purpleturtle | @purpleturtle | Dec 15, 2023

Thank you fot including me in this email. I haven't had a l Pineal Cyst so I don't think I would be able to be able to contribute. I hope you are able to get some support from this issue.