Meningioma

Hi, sorry to hear about your vision. My doctors keep telling me that my meningioma is tiny and is taking the wait and see approach. I'm a little nervous about knowing it's there and it could cause problems. I know my vision has changed and have to wear stronger glasses all the time. I guess I'll just wait and keep an eye on it. I also have a pituitary adenoma that I am watching. Glad to hear it is not growing!

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I had no symptoms until a severe tonic/clonic seizure lasting 6 minutes sent me to ER. It was my first seizure ever and they discovered the meningioma. Four days later , craniotomy. Successful removal of benign mass. Imbalance, some cognitive/verbal difficulties (seen as mild by family, driving me nuts), neuropathy and encephalomalacia are all topics I’ll be discussing with neurologist this February 2024.

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I understand how frightening it was to receive this diagnosis.
I was diagnosed with my menginoma in 2005 after an mri for my Menierer's diagnosis.
I was told it was almost always benign and to just have it checked every year which I did for a while. Then I got lazy and stopped following up. My family doctor insisted I follow up in 2018 with a mri. My tumor was there but I was diagnosed with amyloid angioplasty a very rare untreatable
uncurable issue. I went to the Mayo Clinic in Rochester for a 2nd opinion. They said the only way to diagnose it 100% would be with a brain biopsy after death. They also told me my menginoma was growing and recommended having a radiation treatment to try to slow or stop the growth. Unfortunately it didn't work and I had 2 major strokes in 2019. After the 2nd stroke I had to have emergency surgery to remove my tumor which was a grade 1. I have had frequent mris since then to follow the tumor. Thankfully it is stable.
The surgery affected my left side balance but I am functioning.
I wish you the best.

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I understand how frightening it was to receive this diagnosis.
I was diagnosed with my menginoma in 2005 after an mri for my Menierer's diagnosis.
I was told it was almost always benign and to just have it checked every year which I did for a while. Then I got lazy and stopped following up. My family doctor insisted I follow up in 2018 with a mri. My tumor was there but I was diagnosed with amyloid angioplasty a very rare untreatable
uncurable issue. I went to the Mayo Clinic in Rochester for a 2nd opinion. They said the only way to diagnose it 100% would be with a brain biopsy after death. They also told me my menginoma was growing and recommended having a radiation treatment to try to slow or stop the growth. Unfortunately it didn't work and I had 2 major strokes in 2019. After the 2nd stroke I had to have emergency surgery to remove my tumor which was a grade 1. I have had frequent mris since then to follow the tumor. Thankfully it is stable.
The surgery affected my left side balance but I am functioning.
I wish you the best.

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Hi, I just found out two weeks ago that I have a meningioma on my right optic nerve. It’s 1 cm. I have an appointment with a neurosurgeon next week to determine a treatment plan. I have some vision loss which seems unlikely to return, even with surgery. I’m scared but trying to be positive- unlikely to be cancerous, very healthy otherwise, etc.

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Perhaps you have read about my experience 7 months ago. I had a 2.7 mm. meningioma that was 1/16 th of an inch from my optic nerve. The neurologist that I first consulted when the meningioma was found incidentally during a scan for something else referred me to a radiation oncologist as I was told it was too close to my optic nerve to do surgery. The radiation oncologist agreed. My daughter insisted I go to UCSF and talk to a neurosurgeon.
He said, "No problem, I do one or two a week." (specifically that close to the optic nerve)
The surgery was successful; the entire meningioma was removed.
The surgery was much easier than I had ever imagined. I was home on the third day. Except for the pain med given during surgery, I only took tylenol. One drawback was that I did have double vision for 3 1/2 months after my surgery. But, that resolved and I am doing well. I might add that it is imperative that you receive care at a top notch neurosurgical center.

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