Any Optic Nerve Meningioma Patients Who've Had Surgery?

Best of wishes for the success of the radiation. I am in the Seattle area
and was told the same however ( please don't let this effect your decision)
I had radiation in april and at my 90 day mri it hadn't shrunk at all. Then
I decided to seek one more opinion by the very rude doctor and he told me
that these tumors rarely shrink!! I have double vision in the right eye
especially with reading and driving at night ( which I no longer can do)
and it will not focus so I wear glasses anyway and was told to get glasses
with a prism in them to relieve some of the pressure for my eye to try to
focus. I also have drops that they use for glaucoma to relieve the internal
pressure. Then I get severe right side facial pain: eye, forehead, cheek
and teeth! Do you get facial pain??
Thoughts and prayers for a successful radiation! It was actually
comfortable for me with the mask. Held my head nice and snug so I hope you
will have a good experience too. Thank you so much for responding, julie

@pranas Last year, I had a meningioma sitting on my left optic nerve near where the nerves for both eyes intersect. I opted to get the surgery (in Sacramento) so the meningioma did not grow onto my right optic nerve. At the time of surgery, I was seeing through the middle of a black circle with little to no peripheral vision. After surgery, the black circle was gone, but it is as if someone coated my eye with vasoline. I have light perception and can make out some shapes, but otherwise I am legally blind in that eye. I am awaiting my 6 month MRI for the NS decision on whether or not I will need radiation. Even with this outcome, I would do it again. Hope this helps...

Sorry to hear about your eye but the good news is that it didn't grow. I had a surgery on 1/7/2020 to remove part of the tumor, grade II. My eyesight was also in danger, they removed a little from the tumor which took pressure off the optical nerve and now I see better/normal again. In July of this year, I will know if I will get radiation. Unfortunately, right now I am fighting with CSF leak...but it will get better!!! All the best to you....we have to be strong!!!

@amomand3girls hello and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your experience with @pranas and the other members. It sounds like you made a great decision to avoid the growth into your optic nerve.

Will you post again with a follow up to your MRI?

My wife just went through this type of surgery. Her surgery was this past Thursday 8/12/21. She has a very long scar starting at the front center of her left ear and following along the hair line to above the center of her right eyebrow; 22 staples. Breaks my heart to see her like this. Mild to strong headaches. To her credit she isn't taking the Oxycodone they prescribed, just Tylenol. She is tired all the time and hasn't regained her equilibrium yet. Her tumor is very large to quote the doctor but they only resected the area around the optic nerves. Her vision which was almost totally gone in her left eye has not improved yet but we are praying that out gracious Lord Jesus will do so. Just got the pathology report which said, no atypical features seen, which is very good news, praise God!

My June 2021 MRI showed my “persistent” tumor. My neurologist brought it before the Gamma knife board and as projected I was not a candidate. The following week, the tumor board determined radiation to be the best next step.

I started radiation on 8/5/21. I go Monday through Friday until 9/17/21. It’s a quick appt lasting no more than 15 mins. The hardest part of the appt is being in the mask. The biggest side effects I have so far are fatigue and nausea.

I am so sorry to hear your wife is going through this, @tiosborne. My scar location sounds the same, as well as my visual prognosis.

It took several months for my equilibrium to get to my new normal. I started with a walk on our uneven street that I increased, minimally, day by day. I had my hubby or daughter with me that first month to hang on to me.

My surgery was 11/18/20 and I did not start driving again until 4/21. I didn’t know until o got into my car and drove, that the one place I can see out of my left eye is my blind spot. It is a true miracle from God. I still don’t drive at night. And not on the freeway until this month. My radiation appts are downtown, so I have to.

On 7/13/21, the tumor board determined radiation was the best course. I started on 8/5/21, Monday through Friday and will continue until 9/17/21.

I hope and pray your wife’s team of doctors take care of her well. She sounds like a strong woman and God has the rest!

I just had my 2nd brain tumor surgery on March 12, 2021. My meningeoma grew from the first surgery within a year and a half. The Dr can't remove the entire tumor because it's wrapped around the optic nerve and carotid artery.

I just finished 6 weeks of radiation to hopefully stop it from growing again. I'm legally blind in my left eye. I can see a little bit out of it. It's like looking through Vaseline for me also. Fatigue and some nausea was felt from the radiation. I'm getting my energy back slowly. I have my next MRI scheduled for November 4th. I'm just praying that this tumor stops growing, I don't know if I can have another surgery if it continues to grow. Praying for everyone going through this.

My neurosurgeon wants to perform a craniotomy for optic nerve menangioma. I’m trying to find out if there’s a less invasive option.

My wife has a optic nerve cavity meningioma tumor the size of a large egg. August 12th 2021, they operated to remove tumor from around the optic nerves to save her vision. She was blinded in her left eye because of nerve damage caused by the tumor prior to the surgery. As a result of the surgery she lost her peripheral vision in her right eye with no improvement for left eye. The amount of tumor they removed was so small that they misdiagnosed it as a grade one. 2 months later the tumor had grown from 5 cm to 6 cm and was blocking the fluid vesicles in her brain so that she was retaining fluid. Surgeons gave us two options install a shunt to allow the fluid to be bled off or do another craniotomy this time going from the top through the brain to reduce the size of the tumor and then use radiation. The surgeon was not forthright with us about the side effects of doing the second surgery. If I’d have been better informed about the side effects of the surgery I would have had them install the shunt and not done the second surgery which happened on November 30th, 2021. Her tumor is grade 2 and grew back within six weeks of the second surgery and we ended up having to have a third surgery to have this shunt installed which took place on January 24th, 2022. The radiation therapy doctor was very open about the possible side effects and consequences of both the radiation therapy and doing nothing and watch the tumor. With a choice between watch and wait which will most likely kill her because the tumor is starting to press against the brain stem, or do the radiation. Next Monday February 21st, she starts 6 weeks of radiation treatment in the hope of stopping the tumor from growing. Lord have mercy on my wife and on you as you move forward.