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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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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 8, 2019

Hi Melissa, I modified the title of your discussion to focus on radiation treatment for optic nerve meningioma and vision issues. I'd like to bring fellow members @alpineir @pranas @nancye3 @07ram @pegorr @kiturah @tammywyatt @kelliegirl33 into the discussion in the hopes that they have experiences to share with you.

You might also appreciate this discussion happening in the Hearing Loss group.
– Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/

In particular, see the second message in the discussion that Joyce posted about proprioception and VRT (Vestibular Rehab Therapy). While your balance issues stem from vision issues, I wonder if any of her tips might ring true for you? Melissa, what type of radiation are you getting?

REPLY
2 replies
andavis1189 | @andavis1189 | Sep 15, 2019

Hi Melissa!

I was diagnosed at age 13 with this and it took the vision from my left eye. When I started I had zero vision. Upon completion of radiation (30 treatments), I had some Peripheral vision return (I could count cards with my left eye only). After a year I believe I lost all vision in my left eye. I didn't even know I was blind in that eye until I had a sports physical! I'm so sorry that you are having these issues with balance. I do know that driving at night is harder for me, but I make sure to keep my distance from the other vehicles.

I hope this has provided some comfort as you are not alone in this. Are you having any symptoms from the radiation? Mine just made me very sleepy, and hungry!

REPLY
Melissa Kimbrel-James | @mkjames | Sep 23, 2019
In reply to @colleenyoung "Hi Melissa, I modified the title of your discussion to focus on radiation treatment for optic..." + (show)
@colleenyoung

Hi Melissa, I modified the title of your discussion to focus on radiation treatment for optic nerve meningioma and vision issues. I'd like to bring fellow members @alpineir @pranas @nancye3 @07ram @pegorr @kiturah @tammywyatt @kelliegirl33 into the discussion in the hopes that they have experiences to share with you.

You might also appreciate this discussion happening in the Hearing Loss group.
– Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/

In particular, see the second message in the discussion that Joyce posted about proprioception and VRT (Vestibular Rehab Therapy). While your balance issues stem from vision issues, I wonder if any of her tips might ring true for you? Melissa, what type of radiation are you getting?

Jump to this post

Thank you so much! I just completed 28 days of fractionated radiotherapy. No improvement yet, but my fingers are still crossed. The Drs seem to think there is a small possibility, but not likely, that my eyesight will come back. Thanks so much for the balance article. It is so well written, like an instruction manual. Will definitely be trying this out. So thankful for people like you & this wonderful resource!

REPLY
nsouder | @nsouder | Oct 1, 2019
In reply to @colleenyoung "Hi Melissa, I modified the title of your discussion to focus on radiation treatment for optic..." + (show)
@colleenyoung

Hi Melissa, I modified the title of your discussion to focus on radiation treatment for optic nerve meningioma and vision issues. I'd like to bring fellow members @alpineir @pranas @nancye3 @07ram @pegorr @kiturah @tammywyatt @kelliegirl33 into the discussion in the hopes that they have experiences to share with you.

You might also appreciate this discussion happening in the Hearing Loss group.
– Balance issues and hearing loss https://connect.mayoclinic.org/discussion/balance-issues-and-hearing-loss/

In particular, see the second message in the discussion that Joyce posted about proprioception and VRT (Vestibular Rehab Therapy). While your balance issues stem from vision issues, I wonder if any of her tips might ring true for you? Melissa, what type of radiation are you getting?

Jump to this post

A year ago I was diagnosed with a Meningioma on the Optic Nerve. They did surgery however just increased room for it to grow (I wanted them to just remove it). It is on the total left optic nerve (I have vision issues and headaches). My last MRI 6 months after surgery indicated it has modest growth.
I need input on what I should do now.

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sghimire40 | @sghimire40 | Apr 30, 2023

Hi Melissa, how are you doing recently? How was your progress. I am diagnosed with Optic Nerve Sheath Meningioma, I have lost my field vision, and doctor are recommending me to do a radiation therapy. I am confused whether I should opt in or out. Radiation Therapy may help on this, but I have a fear that it may create some other problem due to radiation. Did you face any problem after radiation till the date? Will really appreciate your feedback.

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2 replies
sghimire40 | @sghimire40 | Apr 30, 2023
In reply to @sghimire40 "Hi Melissa, how are you doing recently? How was your progress. I am diagnosed with Optic..." + (show)
@sghimire40

Hi Melissa, how are you doing recently? How was your progress. I am diagnosed with Optic Nerve Sheath Meningioma, I have lost my field vision, and doctor are recommending me to do a radiation therapy. I am confused whether I should opt in or out. Radiation Therapy may help on this, but I have a fear that it may create some other problem due to radiation. Did you face any problem after radiation till the date? Will really appreciate your feedback.

Jump to this post

@mkjames

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 8, 2023
In reply to @sghimire40 "Hi Melissa, how are you doing recently? How was your progress. I am diagnosed with Optic..." + (show)
@sghimire40

Hi Melissa, how are you doing recently? How was your progress. I am diagnosed with Optic Nerve Sheath Meningioma, I have lost my field vision, and doctor are recommending me to do a radiation therapy. I am confused whether I should opt in or out. Radiation Therapy may help on this, but I have a fear that it may create some other problem due to radiation. Did you face any problem after radiation till the date? Will really appreciate your feedback.

Jump to this post

@sghimire40, what type of radiation is being offered? Did you decide to opt in?

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sghimire40 | @sghimire40 | May 8, 2023

@colleenyoung Hi Colleen, the note says it is going to be Intensity modulated radiotherapy. I need to decide very shortly to opt in or opt out. Thus, would like to get feedback from already experienced members.

Thank you for the follow up.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 25, 2023
In reply to @sghimire40 "@colleenyoung Hi Colleen, the note says it is going to be Intensity modulated radiotherapy. I need..." + (show)
@sghimire40

@colleenyoung Hi Colleen, the note says it is going to be Intensity modulated radiotherapy. I need to decide very shortly to opt in or opt out. Thus, would like to get feedback from already experienced members.

Thank you for the follow up.

Jump to this post

@sghimire40, did you decide to do radiation?

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