Optic Nerve Meningioma patients

Posted by alpineir @alpineir, Feb 20, 2018

I would like to connect with anyone who has an optic nerve meningioma and underwent surgery to resect this type of benign tumor.

@nancye3

Colleen, can you send my reply to Pranas to alpinier?
Thank You

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thank you and thank you for your well wishes.

@nancye3

Hi Pranas,
How large is your tumor? Are you having any side effects from it. My sister had surgery 15 years ago for a frontal lobe tumor. She did lose her sense of smell but vision is fine. She recently found out that she has a New meningioma very close to her optic nerve. After consultations with several NS she decided to fly to Rochester
Mayo Clinic where she had Gamma Knife Radiation on that meningioma and 2 other new ones. She will go back in April for another MRI to see if they have shrunk in size. Hopefully you will hear back from others on this wonderful site who can be of some help to you and share surgical experiences. Best of Luck and sending well wishes your way. Nancy

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Thank you very much, his name sounds so German…by the way I'm German!!!

@pranas

My tumor is growing around my left optical nerve. I do need a surgery but some NS warned me that I might not be able to keep my vision. Where did you have your operation?

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Mine also was growing around mine. Therefore they were unable to remove all of mine. The only issue I have 8 years later, is dry eye. I do where trifocals.

I have had experience with this. My surgeon removed as much as he could, but I still have bone and tumor pressing on my right optic nerve.In fact it is bent into a V. I did have cyber knife on the remaining tumor. My outcome has been pretty good. I also have a tumor near my optic on the left and this year I had gamma knife at Swedish Hospital in Seattle. I have also had cyber knife on the tumor close to my brain stem, and I have had 2 craniotomies to remove meningioma tumors. My neuro did offer surgery on the left optic tumor but after much prayer and consideration my husband and I opted for the gamma knife because I feel it is less invasive and honestly I just didn't feel up to another surgery:-) Weirdly my half brother also had a tumor wrapped around his optic nerve which did happen to blind him before he knew he had it. His VA surgeon removed as much as he could. While my sight isn't 20/20 I can see very well considering all that has been done. I only need glasses to read and my peripheral is definitely a bit dicey but a head turn takes care of the problem. The radiation did not shrink my tumors but hopefully stopped them in their tracks. I have referred to these last naughty 3 as Ted, Tina and Tiny. While they are not exactly pals we've worked out a way to get along:-) Wishing you all the best, consider all your information and advice and then listen to your heart and head. It's a beautiful life. Hugs and love, peg

Just curious how many still deal with facial pain after surgery. Not all mine was removed and it's been 8 years this June.

Hi @kiturah,

Welcome to Connect. You may notice that I moved your message about finding others with facial pain after surgery, to this discussion. I did this so that members in this discussion will get a notification of your post, and can respond; I also noticed you had recently joined in this conversation about Optic Nerve Meningioma patients, and thought it might be easier to reconnect.

Eight years is a long time to deal with facial pain; how have you been coping and managing, @kiturah?

Hi. I am recouping from optic nerve meningioma which I had last Wednesday. It was a hard 4 hr surgery. Stayed overnight in neuro ICU. Had a massive headache for a few days but getting better each day. Surgeon was able to get almost all the meningioma except some cells on and too close to the optic nerve. It is an exhausting recovery but each day feeling a bit better. Glad I did this surgery to preserve my eyesight.

@colleenyoung

Alpineir, I'm tagging fellow members who have experience with meningiomas involving the optic nerve. I hope @pranas @nancye3 @pegorr @irishel @07ram and @barbarabx will join this discussion to share their experience with treatment options, in particular surgery.

In the meantime, @alpineir can you tell us a bit more about your situation? What surgical options are available to you? What questions would you like to ask?

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My wife underwent cataract surgery in Apr 2018. She continued to have cloudy vision, was told to have a brain scan (MRI) and the result was that she has a 1.3 cm x 1.3 cm x 1.5 cm meningioma that is pressing against the optic nerve. That is why she has cloudy vision and has failed 3 vision tests (lost peripheral vision). This was all confirmed by a nueroopthalmologists and she now scheduled to see a neurosurgeon for options regarding treatment. Like you, I don't know exactly how my wife and I should proceed.

@colleenyoung

Alpineir, I'm tagging fellow members who have experience with meningiomas involving the optic nerve. I hope @pranas @nancye3 @pegorr @irishel @07ram and @barbarabx will join this discussion to share their experience with treatment options, in particular surgery.

In the meantime, @alpineir can you tell us a bit more about your situation? What surgical options are available to you? What questions would you like to ask?

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Hi @israel53
I thought I'd check in to see how you and your wife are doing? What course of treatment did you, she and her care team decide to take?

@colleenyoung

Alpineir, I'm tagging fellow members who have experience with meningiomas involving the optic nerve. I hope @pranas @nancye3 @pegorr @irishel @07ram and @barbarabx will join this discussion to share their experience with treatment options, in particular surgery.

In the meantime, @alpineir can you tell us a bit more about your situation? What surgical options are available to you? What questions would you like to ask?

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Hi Nancy. Sorry for not replying sooner. It's been a worldwind. From Orlando to Baskum Palmer Institute, Miami and now to Mayo Jacksonville. Still not sure what to do. Some doctors recommend drug therapy while others recommend fractionated radiation and yet others say surgery is the best option. Do you have any ideas? Thanks for remembering us.

@alpineir

Hi. I am recouping from optic nerve meningioma which I had last Wednesday. It was a hard 4 hr surgery. Stayed overnight in neuro ICU. Had a massive headache for a few days but getting better each day. Surgeon was able to get almost all the meningioma except some cells on and too close to the optic nerve. It is an exhausting recovery but each day feeling a bit better. Glad I did this surgery to preserve my eyesight.

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Hi. My wife is considering surgery for a meningioma pressing on her left optice nerve. Options provided was to operate through the top of her skull or above her left eyebrow. How was yours performed? How long did you remain in the hospital? Did you or will you need radiation on the tumor remnants? I'd appreciate the information, my wife is scheduled for surgery in a few thank you. Israel, Orlando, Fl

@alpineir

Hi. I am recouping from optic nerve meningioma which I had last Wednesday. It was a hard 4 hr surgery. Stayed overnight in neuro ICU. Had a massive headache for a few days but getting better each day. Surgeon was able to get almost all the meningioma except some cells on and too close to the optic nerve. It is an exhausting recovery but each day feeling a bit better. Glad I did this surgery to preserve my eyesight.

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My tumors were all in the left frontal lobe so there were no options given. I had a craniotomy and my surgeon was able to removed one skull window piece in order to reach all the tumors from that one area. I recovered for 1 day in icu and one day in step down and was sent home after 48 hours post op. I thought it was a little too fast but I did rest better at home. These neurosurgeons are very skilled and they know best. I did not have any radiation all of my tumors were totally removed and no attached to anything. Ask questions and have your wife listen to her body she knows herself best. Best wishes for great results it's a scary process but she's do well.

I have an optic nerve Meningioma and I’ve had two options for treatment. One surgery cut my skull peel the skin remove most of the tumor. Other option was 6 weeks radiation five days a week. The surgeon says no radiation would damage nerves. The oncologist says no surgery too invasive. I’m so confused is there an endonasal endoscopic surgery and where to get that.

@alpineir

@tammywyatt

I have an optic nerve Meningioma and I’ve had two options for treatment. One surgery cut my skull peel the skin remove most of the tumor. Other option was 6 weeks radiation five days a week. The surgeon says no radiation would damage nerves. The oncologist says no surgery too invasive. I’m so confused is there an endonasal endoscopic surgery and where to get that.

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@tammywyatt, I can see why you would be confused when one specialist negates the recommendation of the other. Have you considered getting a second or rather third opinion?
Let me know if Mayo Clinic might be an option for you and I'll post the contact information.

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