Mayo Clinic Connect
I would like to connect with anyone who has an optic nerve meningioma and underwent surgery to resect this type of benign tumor.
Liked by mrector
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?
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?
Liked by dbestwest1
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
Colleen, can you send my reply to Pranas to alpinier?
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Hi Nancy, your reply went to everyone participating in this group discussion, including pranas and alpinier. Thanks for reaching out to help others, and sharing your sister's experience.
Nancy, my tumor is presently 3cm x 4,4cm and I have to do something. I got operated first time back in October 2012 but since then it has grown 5mm. I do have seizures but take Keppra. Otherwise, I have no side effects…I’m more sensitive to noise or bright lights. I just wish it would stay like this…they informed me at my next operation speech and vision is in danger…
My present meningioma is behind my right eye next to my optic nerve. It is a remnant from my original atypical meningioma that was removed on 4/29/2015, by neurosurgeon matthew hummel in austin, tx. He didnt say it but I think he left the remnant because it was too close to my optic nerve. I had radiation with cyberknife in jan. 2016. Had several mris and it came back again on nov 2017, had cyberknife again in jan 2018. My vision is still good, have 20/20. Hope this helps.
My meningioma is 10x7x7 mm pressing on the optic nerve. I have "tunnel" vision in this eye with no peripheral field vision. My right eye takes over. If I need to see on my left side I have to turn my head to the left. I am having surgery in Tucson next month. I am so overwhelmed. My vision will not get better – it is just to preserve what I have now.
The location of my left optic nerve meningioma is pressing on my nerve. There is nothing they can do for gamma knife or radiation therapy because it will fry the left optic nerve. The size is 10x7x7 mm. It is small, but is affecting my left eye vision. I see tunnel vision in this eye and do not see the peripheral fields. I am having surgery in Tucson with a neuro surgeon next month. I am so overwhelemed. It will not make the sight better only preserve as he cannot go close to the optic nerve because if disturbed, I will go blind in the eye.
My meningioma is pressing on left optic nerve. My neurosurgeon is in Tucson AZ and he indicated that he can only remove piece by piece very delicately the bulk of the tumor so it does not cause any more pressure to the nerve. He will also take away or shave some bone near the optic nerve to give "space" for tumor not to continue to press on optic nerve. He cannot remove all because it is right on the optic nerve (left) and if the optic nerve is disturbed it will leave me blind in the eye. I am only getting the surgery to preserve the eyesight I do have which is tunnel vision and cannot see peripheral fields. Wish me luck!
No other options per neuro surgeon in Tucson AZ. He has done 1 a year in his 32 years of being neuro surgeon. In the past year alone, he has done 4. I asked why not a clinical study on why there are 4 this past year alone. He said not enough for a study and the numbers are considered not huge. It is rare to have an optic nerve meningioma, but it does occur. Mine is pressing on the left optic nerve near the chiasm area. It is creating my vision to be distorted (tunnel vision) and my peripheral fields are affected. I had cataract surgery in September then YAG because a piece of "protein" was left behind the lens. But, I still could not see well. Finally went to neuro opthamologist (only one in Tucson BTW) and he sent me for MRI. MRI revealed a 10x7x7 mm meningioma. I saw surgeon and because of location, surgery is the only option. Cannot do radiation therapy or stereotactic radiation surgery or gamma knife either. I feel so overwhelmed. My only recourse is surgery which is scheduled next month.
I live in Tucson. My tumor is also pressing on my left optic nerve. I have not had surgery yet. Scheduled for next month in March in Tucson with a neuro surgeon who has done these before. He said all his surgeries are successes, but there is always a risk because of this type of surgery that it might also leave me blind. He cannot "remove" entire tumor, but will remove the bulk of it and give me time to preserve my eyesight. Because there is already damage to the optic nerve, eyesight does not get better, it will only preserve what I have now. Pray for me!
I wish you all the best and hope it will come out better than expected. Pls can you share who is your surgeon…
Thinking of you and praying for best possible outcome!!
Kurt Schroeder at Center of NeuroSciences on River Road in Tucson AZ
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