Meningioma pressing against the optic nerve

Posted by TLOsborne @tlosborne, Aug 9, 2021

My wife Marylou (59) has a tumor.
Diagnostic Studies:
A brain MRI from 07/23/2021, shows a very large left sphenoid wing meningioma, that encases the carotid artery, proximal anterior cerebral artery, and proximal middle cerebral artery. It is also encasing the optic apparatus and extending into the pre-mesencephalic space.
She is scheduled for a 2nd MRI today 8/9/21, followed by consolation with a neuro-surgeon in advance of surgery planned for 8/12/21.

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@tlosborne

We don't know yet if there is cancer, as the biopsy results have not come back. Unfortunately they could only remove a small amount of tumor. Please continue praying.

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Please keep us updated as you learn more. I am hoping for the best.

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Still waiting for a post-operative physical and occupational therapy evaluation. I'm supposed to return to work Wednesday but I don't know yet if it will be safe to leave her alone and I've yet to find anyone willing to stay with her while I'm out.

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It's been a long while since I posted anything, but here goes.
My wife Marylou had the surgery, but it didn't go well. She lost her peripheral vision in the right eye and is blind in the left. She has significant memory issues as well.
On 9/17/21 Marylou's sister Mel arrived from Manila Philippines to help out and I was able to return to work the following Monday.
On 9/29/21 she had her follow up appointment. The surgery suggested a possible 2nd surgery. We saw folks at the radiation center but they said the tumor is too large to effectively treat with radiation. He suggests that surgery to remove everything they can and then radiation on the rest as the best option.
After the 9/29 follow up the surgery said she could go back to work which she did on November 1st, but because of memory issues was not able to do her job so they sent her home on the 4th.
Her 2nd follow up appointment is Wednesday 11/17/21.
She was maintaining until about two weeks ago, but has gotten worse of late. Balance issues, memory issues, vision issues and now some incontinence.
I love my Marylou and want her back and am trusting Jesus to see us through.

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Marylou is scheduled for another surgery on 11/30/21

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I am having surgery at UCSF Sept. 11 for a left sphenoid meningioma that is about 2 centimeters long, the bulk of which is on the orbital apex. I would appreciate any feedback with regard to the post-surgery recovery both immediately after the surgery while in the hospital and after returning home for what I was told would be a 6-8 week recovery period.

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@mrector

I'm here to help if I can. Everything went well. I just have fatigue because of the radiation but I am getting better. I am legally blind in my left eye now but I'm okay with that. The Dr's are just trying to do everything they can to keep the tumor from growing again, I just hope it works.

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Amazing testimony. May I ask you what kind of radiation treatment you had? proton beam, conventional radiation, gamma knife?
Also why didn't you have radiation after the first surgery?
When did you completely lost your vision on your eye? after surgery or after radiation?
Just curious as I have had one surgery and radiation has been recommended. Thank you.

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@mkoch

I am having surgery at UCSF Sept. 11 for a left sphenoid meningioma that is about 2 centimeters long, the bulk of which is on the orbital apex. I would appreciate any feedback with regard to the post-surgery recovery both immediately after the surgery while in the hospital and after returning home for what I was told would be a 6-8 week recovery period.

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Your case sounds very similar to mine. I had the same surgery on 9/22. My tumor was 3x4 cm with an extension to the orbit of my left eye. Surgery went really well. They were able to preserve my vision. I had double vision for 9 weeks but it resolved itself. My total recovery time was 10 weeks. I had balance issues the first two weeks. Did PT as an inpatient and then 3 times/week for a month. A lot of fatigue. I did not have headaches or other pain. You will need a lot of rest, but you will see gradual improvement as the weeks go. Recovery takes time due to all the swelling in the brain. Take good care of your wound. Be comfortable in your bed and I recommend having a recliner. My eye was purple and bulging. Have ice as much as you can. Buy in Amazon those soft ice packets that you can refreeze. Baby shampoo for your head and have someone do it for you. If your equilibrium is not very good right after the surgery. Use a chair in the bathroom. Use a walker too. Pray for your surgery and recovery.

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