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Cavernous sinus meningioma
Hello, I have recently been diagnosed with a right cavernous sinus meningioma that has wrapped around the carotid artery and is pressing on the optic nerve and 2 other cranial nerves. Even though I live in a large city, I feel very limited by the physicians whom I have seen so far. They first said, I will see you after surgery. Then inoperable due to the area and surrounding structures and I am finally getting a second opinion where I have found out that radiation to or around the optic nerve is very dangerous. Has anyone had surgery in this area successfully or did you forgo surgery for radiation and how did that effect your vision and optic nerve ( I have double vision and severe headaches , as well as, a few other symptoms like ringing in the ears, face pain etc. I would appreciate any comments and experiences, thank you
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Hello, came across your post and was wondering which route you went either if any for treatment? I also have a right CSM.
roz0606: I had a left cavernous sinus meningioma. It was 1/16th of an inch from my optic nerve. The neurologist I initially consulted said, "No one is ever going to operate in that location." He referred me to a radiation oncologist in San Jose. And as you stated, the radiation oncologist said it was a dangerous area even for radiation. In fact, he said he wanted to consult with the neurosurgery department at the University of Calif. in San Francisco for their advice. Long story short, (as I've posted about my experience more than a few times and I'm sure others are weary of reading about it) I sent my MRI scans to UCSF digitally from my local hospital and made a ZOOM appointment with the neurosurgeon at UCSF who is in charge of overseeing all meningioma surgeries as well as the radiation clinic. He told me the best line of treatment, if possible, is to remove any meningioma. So his advice to me, upon reviewing my scans with me and my husband, was to have the surgery. I said to him, "But two doctors have told me no one is going to operate in that area," His response was, "I do one or two a week." Long story short I had the surgery, as of this very week, 2 years ago. Two weeks after that I was passing out Halloween candy. I encourage you to have a video zoom visit with Dr. Theodosopoulos at UCSF. My local radiology clinic in the small city I live in had a direct link in their system to transfer my MRI scan to UCSF. Tanya is the one who schedules both in person visits and ZOOM visits. The number is 415-353-2209. Hope this helps.