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.

santaflavia | @santaflavia | Apr 21 1:19pm

In reply to @colleenyoung "Hamillc, waiting is unsettling. I can imagine you can't get this out of your head. Allow..." + (show)

Hello Colleen, I just joined today after finding this with an online search. I have seen a radiation oncologist at Mayo via video visit and I will be seeing a local radiation oncologist
here in Milwaukee later this week. I am extremely anxious trying to make a decision whether or not to have radiation at Mayo for an Optic Nerve Sheath Meningioma or locally. I would appreciate any advice from others who have had the radiation at Mayo Rochester. Thank you. Today is April 21, 2024.

mkoch | @mkoch | Apr 22 7:24pm

In reply to @santaflavia "Hello Colleen, I just joined today after finding this with an online search. I have seen..." + (show)

Do you live in Milwaukee? Is that the reason to have the radiation done there instead of the Mayo clinic in Rochester, which is 4 hours away? When I was advised to have radiation for my a meningioma 1/16th of an inch from my optic nerve I was told the radiation schedule would be 5 days in a row, and then I would be done. That would be worth it to me to rent a hotel in Rochester for a week and know I am having the radiation done at a world renown medical institution. (As an aside, I chose to have a craniotomy to remove the meningioma instead.)

santaflavia | @santaflavia | Apr 22 8:17pm

Hello mkoch, thank you for your reply. Yes, I live in Milwaukee, but my understanding is that the radiation would be done in 28 sessions, which would mean moving to Rochester for five sessions a week for a total of about six weeks (not including the initial planning period.) Did you end up having your surgery at Mayo Rochester? How are you doing?
I see the local radiation oncologist tomorrow afternoon. Thanks again for your input.

santaflavia | @santaflavia | Apr 30 12:40pm

hello again, if anyone has any input re: making a decision about whether or not to have about 28 sessions of IMRT at Mayo v. at home (i.e. Froedtert in Milwaukee) I am still open to input. I sent out an email today to friends asking who, if anyone, would be willing to come up and stay with me for a week at a time so that my husband can keep working. (he could adjust his work so that he could come part of the time but not all of it) I was told that
I could not be in Rochester alone during treatment. Thanks.