Anyone have vision loss associated with a pineocytoma?

Posted by jammers @jammers, May 9 10:06am

Does anyone have any information on vision loss associated with a pineocytoma? Ever since I was diagnosed, I’ve had issues with my sight.

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Colleen Young, Connect Director | @colleenyoung | May 18 2:22pm

@jammers, I can imagine that this is all very frightening. Is this a new diagnosis for you? I read in your bio that you had a follow-up appointment scheduled this past week. What did you learn? How are you doing?

jammers | @jammers | May 18 4:47pm

Yes, this is new and was found on accident. Being a single mom, it’s frightening to think about what could happen.

Colleen Young, Connect Director | @colleenyoung | May 25 11:17am

In reply to @jammers "Yes, this is new and was found on accident. Being a single mom, it’s frightening to..." + (show)

@jammers, what did you learn at your follow-up appointment? Is surgery an option for you?

jammers | @jammers | May 25 12:55pm

Thankfully there was no growth of the tumor. Due to its location, my understanding is that surgery is risky. Since I am not experiencing any side effects at the moment, we are not considering surgery. I will have a follow up MRI in 6 months. Many questions I was afraid to ask, life expectancy, etc.

elisabeth007 | @elisabeth007 | May 26 12:35pm

Do you have a neuro-opthamologist? i have one of the best in the world and am so grateful to him. He is the doctor who helps me with vision loss.

jammers | @jammers | May 26 12:50pm

I didn’t even know that was a thing, so thank you for your reply!! I’ve been to my regular ophthalmologist and he said he can see nothing wrong with my eyes. He’s taken pictures and run test and he says the eyes look healthy, but I’m experiencing cloudy, double vision. I wonder if I would need a referral from my neurologist in order to see this type of specialist.

Again, thank you so much for your reply ❤️