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Optic Nerve Sheath Meningioma: Having Vision Issues, Doing Radiation

Posted by Melissa Kimbrel-James @mkjames, Sep 6, 2019

Hey guys! I am 37 years old & was recently diagnosed with an optic nerve sheath Meningioma. In a matter of three years I have lost all vision in my right eye. Most would think, as I did, you have 2 eyes- you’ll be okay with just one & boy was I wrong. My life has changed drastically! Between no longer driving at night (or in the rain) & the balance and double vision issues, I have slowed down a lot!
I am currently at the half way mark of my radiation vacation at Mayo in Jacksonville & I have a wonderful team taking care of me & couldn’t ask for any better. ❤️
I am interested to see if any of you treated with radiation, with vision issues, regained any of your sight?

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jasonl1012 | @jasonl1012 | Aug 3 9:16am
In reply to @santaflavia "Are there any more current entries or "threads" or "conversations" about Optic Nerve Sheath Meningioma ?..." + (show)
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Are there any more current entries or "threads" or "conversations" about Optic Nerve Sheath Meningioma ?
I just finished 28 radiations treatment sessions for an Optic Nerve Sheath Meningioma and I am feeling a bit lost.
thanks.

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I don’t see any. I had mine mostly excised. They say I’ll need radiation when it shows growth but I haven’t had it yet. I’m pretty nervous about it. What type of radiation did you have? How are you doing after? 😩 I wish we didn’t have these stupid things! Why don’t they know more about them if they’re so common?!

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santaflavia | @santaflavia | Aug 3 11:36am

Hello, thank you for your reply.

Was your meningioma on your Optic Nerve Sheath?

Can you still see out of that eye?

I had 28 sessions of photon not proton. I do not recall right now what the dose was. I got done two weeks ago but this past week I am feeling more fatigued and more emotionally fragile. Probably should not have written right now.

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jasonl1012 | @jasonl1012 | Aug 4 7:00pm
In reply to @santaflavia "Hello, thank you for your reply. Was your meningioma on your Optic Nerve Sheath? Can you..." + (show)
Profile picture for santaflavia @santaflavia

Hello, thank you for your reply.

Was your meningioma on your Optic Nerve Sheath?

Can you still see out of that eye?

I had 28 sessions of photon not proton. I do not recall right now what the dose was. I got done two weeks ago but this past week I am feeling more fatigued and more emotionally fragile. Probably should not have written right now.

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It was wrapped partially around one of my optic nerves and up again the optic chiasm. He was able to tease it away to remove. I had double vision for a month but I recovered and my vision got better. Still not 100%. What’s the difference between proton and photon?

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santaflavia | @santaflavia | Aug 4 9:06pm

That sounds like a really delicate operation. Glad you recovered.

I think the difference between proton and photon is not something I am capable of explaining.....

.....I did a quick google search and found this article:
https://www.moffitt.org/taking-care-of-your-health/taking-care-of-your-health-story-archive/proton-radiation-therapy-vs.-photon-radiation-therapy-for-standard-care
Good luck.

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jasonl1012 | @jasonl1012 | Aug 5 9:44am
In reply to @santaflavia "That sounds like a really delicate operation. Glad you recovered. I think the difference between proton..." + (show)
Profile picture for santaflavia @santaflavia

That sounds like a really delicate operation. Glad you recovered.

I think the difference between proton and photon is not something I am capable of explaining.....

.....I did a quick google search and found this article:
https://www.moffitt.org/taking-care-of-your-health/taking-care-of-your-health-story-archive/proton-radiation-therapy-vs.-photon-radiation-therapy-for-standard-care
Good luck.

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Thanks!

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