Cavernous sinus meningioma

Posted by julieannarcand @julieannarcand, Mar 12, 2019

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

@julieannarcand

Have you had this surgery yet and if so, did it help?

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I had the gamma knife procedure. It must have stopped the growth, my vision is returning to normal . At least the ground is no longer moving when I walk!! Victory!

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@julieannarcand

I have heard that there is a strong possibility of there returning either in the same location or a different one. My tumor didn't shrink with radiation and the next specialist said that 60% of them do not. I'm only 5 months post radiation but my eye sight has gotten worse and so have my headaches. The people I saw where I had my radiation done were all very nice but it seemed like any questions I had the answer was always " it will take 6 months to a year " for the fatigue or any other symptoms I was experiencing. So I just stopped asking

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My double vision is quite a bit better. Still very "bone tired" and headaches are only better because of the gabapentin (sp?) When I've done too much the vision in my good eye lets me know I am over tired. 2 and 1/2 months after Gamma knife and still praying for healing but a little …fustrated,,,discouraged. Trying to embrace the new limits.

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@pejiota4jack

My double vision is quite a bit better. Still very "bone tired" and headaches are only better because of the gabapentin (sp?) When I've done too much the vision in my good eye lets me know I am over tired. 2 and 1/2 months after Gamma knife and still praying for healing but a little …fustrated,,,discouraged. Trying to embrace the new limits.

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@pejiota4jack – it sounds as though some good things are happening with your vision if the ground no longer appears to move when you walk. Interesting that you get a cue from your vision when you're over tired now.

Would you say that you are feeling frustrated and discouraged as your recovery is taking a different amount of time than you'd thought, or because of the new limits, or something else?

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@pejiota4jack

I went to Mayo in Rochester and had Gamma knife surgery. They did not consider it operable. I was actually pretty upset when they said inoperable. Realized it will never be truly “fixed”, just managed. Very thankful to have a chance for no further damage! I have even regained a little more control of my right eye and have less double vision.

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Hello Karen @pejiota4jack, I just read your different posts. I had a cavernoma in May 2017, as it was liquid blood, it was removed by biopsy (without surgery). However, a year later, a brain tumor (nonoperable) appeared in the same place. My tumor, central, is located at the 3rd ventricle, behind the eyes. I am treated in chemotherapy, which controls growth for the moment. Like you, the tumor is still there. My neuro-oncologist might also want to treat me with gamma knife. We are still lucky to benefit from this advanced technology. Do you have any information to share on gamma knife? Also, I thought we were doing gamma knife only once. Did you have several treatments? Have you had any negative side effects? How's it going? Thank you for your help.

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I have the exact same tumor. It is inoperable because it’s in the ICA and 5 cranial nerves including optic and trigemnial. Very painful but I keep trying new regimens of medication to assist. I did have Gamma Knife Radiation, with no success to shrink it just hopefully contained it. I had it done at Geisinger in PA.

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@shellegrego

I have the exact same tumor. It is inoperable because it’s in the ICA and 5 cranial nerves including optic and trigemnial. Very painful but I keep trying new regimens of medication to assist. I did have Gamma Knife Radiation, with no success to shrink it just hopefully contained it. I had it done at Geisinger in PA.

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Thanks for sharing.

Liked by shellegrego

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@lisalucier

@pejiota4jack – it sounds as though some good things are happening with your vision if the ground no longer appears to move when you walk. Interesting that you get a cue from your vision when you're over tired now.

Would you say that you are feeling frustrated and discouraged as your recovery is taking a different amount of time than you'd thought, or because of the new limits, or something else?

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I would say I am a little frustrated with my progress. I would love to be where I was three years ago but that may not happen. It’s always hard to accept limitations on your abilities. I am taking 6 months off of work and we’ll see where I am at that point. Short term memory has been a challenge.

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@marcyprof

Thanks for sharing.

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How are you doing? Managing the pain?

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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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@tumgo

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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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.

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