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Cavernous sinus meningioma

Brain Tumor | Last Active: Dec 5, 2023 | Replies (63)

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Hi, I hope you are feeling much better. I noticed you posted this last year. I was just curious what came up about my tumor situation and I happened to see your post. When I read your post I realized I experienced the exact same symptoms with the same tumor type. I was referred to a great Neurosurgeon by a friend. He performed my surgery and Everything came out great. He did it open base skull but he couldn't take out everything without doing damage so he left 20% of it. 3 months after surgery it started growing back, I then did radiation. I have no double vision, but the headaches are unbearable at times. The last scan showed it's shrinking and I hope it continues to. There's no way I can undergo another open skull surgery.

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Replies to "Hi, I hope you are feeling much better. I noticed you posted this last year. I..."

Hope it continues to shrink. You may have Trigeminal Neuralgia which is one of the Largest cranial nerves in the cavernous sinus area. I had Gamma Knife twice. My NS at UCSF did not recommend surgery. I’m feeling better but have developed inflammation In the dura that could be Tolasa Hunt Syndrome. They are currently diagnosing it as Idiopathic Pachymeningitis. Prednisone taper down worked but came back as soon as I stopped the prednisone so I was given Rituximab infusions every 12-18 months. I just had my third set of Rituximab infusions this month and feeling better now.