Optic nerve sheath meningioma, worried about results 3 month checkup

Posted by hamillc2 @hamillc2, Jan 24, 2022

I just returned from Mayo Rochester for my three month checkup. I finished 6 weeks of proton radiation Oct. 4. My MRI last week showed it to be a bit larger and it absorbed a bit more contrast. Told me not to get too worried. I can’t rule out in my head that it is getting larger. At first I thought it might still be swollen, but they told me that would have gone away about 6 weeks after. I have to return in 6 months.

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Amanda Roe | @amandajro | Jan 25, 2022

@hamillc2 I am sure you are feeling uncertain. What guidance did your care team leave you with upon departure?

hamillc2 | @hamillc2 | Jan 26, 2022

In reply to @amandajro "@hamillc2 I am sure you are feeling uncertain. What guidance did your care team leave you..." + (show)

Just to recheck in 6 months. Head to ER if experience sharp pains around head, eye area.

Colleen Young, Connect Director | @colleenyoung | Jan 28, 2022

In reply to @hamillc2 "Just to recheck in 6 months. Head to ER if experience sharp pains around head, eye..." + (show)

Hamillc, waiting is unsettling. I can imagine you can't get this out of your head. Allow me to bring a few other people into this discussion like @cristina29 @nsouder @mkjames @mrector @amomand3girls @pegorr @julieannarcand who have experience with optic nerve meningiomas and radiation.

I read in your bio that you are "looking forward to this being over with this and get on with retirement!" What are you doing during this wait time to get on with retirement and enjoying life?

hamillc2 | @hamillc2 | Jan 28, 2022

Hi Colleen! Thank you for the response! Yes I would love to chat with others with similar issues. My area is pretty rare. Less than .5% of M’s, like 100 a year. We are planning to move to Florida this year, so we have been busy getting house ready to sell and working with mortgage pre approvals and a FL realtor. We are in Michigan now. Therefore, we are pushing forward as well as we can to continue our retirement as we would like to 👍

hamillc2 | @hamillc2 | Jan 29, 2022

Can anyone relate? And can you tell me how you are doing? 😊

sghimire40 | @sghimire40 | Apr 30, 2023

Hi @hamillc2 how are you doing recently? 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.