Any Optic Nerve Meningioma Patients Who've Had Surgery?

@mrector - it sounds like through your health journey you've learned to be your own advocate and look out for your best interests.

Hello. My name is Paula. I had proton radiation in 2009. I have a Optic Nerve Meningioma. I have had 3 brain surgeries and 128 proton beam radiation treatments. If you would like to talk. I would love talk. I would love to share my experiences. I have been fighting for my life sine 1999.
God bless.
Paula

I posted this to another person in this group. I’m not sure how this works. I’m new to the group.

Hello. My name is Paula. I had proton radiation in 2009. I have a Optic Nerve Meningioma. I have had 3 brain surgeries and 128 proton beam radiation treatments. If you would like to talk. I would love talk. I would love to share my experiences. I have been fighting for my life sine 1999.
God bless.
Paula

Welcome @paulaakelley70. Thank you for joining the group about Optic Nerve Meningioma to share your experiences, especially with surgery and proton radiation, but also living with such a diagnosis. I'm confident that @kmart @pranas @07ram @israel53 @tammywyatt and others will appreciate your insights.

Paula, why did you have to have 3 surgeries? How are you doing today? What vision issues do you manage?

It is very hard for me now to type. 🙂
Please forgive my mistakes.
The first brain surgery took 17 hours. Wow. Right ? 7 years later it came back with a vengeance. It had spread into my cavernous sinus. Wrapping around all 3 cranial nevers. Right side frontal lobe. I was terminal. Inoperable as well. Then 7 years later I had # 3 surgery they removed as much of the tumor from internal crartive artery. I was having 50 or so seizures a day. They couldn’t remove anymore without horrific permanent damage. Then I did proton beam. 5 days a week for 4 months. I’m now blind in my right eye.
I struggle even today. You must understand I was terminal. Proton beam extended my life considerably. 8 years later I bless god everyday. I will answer any questions anyone has. Please feel free to ask away. 😘

Has anyone had proton therapy ?

I had a meningioma surgically removed about 6 years. I had options of surgery, doing nothing and monitor, and gamma knife. The surgeon was concerned with gamma knife as he said if they were off just a little I could lose the vision in that eye. I was not a fan of radiation anyway. I am sot a good person for wait and see either. I chose to have surgery to remove the tumor. I was 48 and was told by the surgeon that my age would definitely help with the removal of the tumor as the younger you are the easier the tumor will peel off the optic nerve. I went ahead with surgery the next Monday at Mayo Clinic Rochester and retained my vision and have needed no further interventions. I have some residual nerve issues on that side of my face because of the surgery but nothing I can not handle

Hello
I had surgery to remove a benign memingioma near my optic nerve in 1995

Welcome to Connect @jeank1234 and @annethomas. It is so helpful to hear stories of others who have been there. I know @kmart and @mrector will appreciate meeting you.

What did you wish you had known before surgery?

I've lost most vision in my left eye now. I am going this coming Tuesday for my 6 month brain MRI. My appointment with my neurosurgeon isn't until March 4th. I am ready to get my results and see my neurosurgeon to make sure everything is okay.