ONSM: I've been diagnosed with an Optic... - Meningioma Support

Meningioma Support

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I've been diagnosed with an Optic Nerve Sheath Meningioma which is currently contained within the orbit. Thanks to a very good optician. I have restricted vision in that eye according to the tests but I can't really tell. I chose active monitoring over radiotherapy (VMAT). This was because I felt that there was no benchmark and they didn't know if or how fast it was growing. This was in Oct/Nov and I have follow up scans and eye tests in April. So, I'm waiting ....... and thinking!

I am now very aware of my sight and I recognise that sometime my vision in that eye is variable and notably worse than the other eye, then if I cover the good eye and wait a bit to focus it gets better again. Almost as if I have to concentrate to get that eye to see more clearly and if I don't my brain relies more on my good eye. Does this makes sense? Is this typical? what would be a clear indication of my eyesight changing and the tumour changing? Is there something I can do to monitor my eyesight?

These are questions that came up after seeing the Oncologist but I don't really have a route for directing questions before my April appointment. Should this be my GP?

Thank you in advance.

2 Replies

Hello, im sorry to hear about your recent diagnosis, I have restricted field of vision in one eye after an operation to remove a meningioma behind it but I think my problems stem from nerve damage after the op so I cant really say what yours is but I would go and talk to your gp as I know only too well how you can drivedo yourself insane wondering, good luck

Hi there, join meningioma uk on facebook. There will be somebody there that will share their story with you xx

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