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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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I am just creating my profile on this play form . I would like to share I hade my surgery 12/7/22 for meningioma
2& 1/2 in. was at the largest size pressing on my brain stem petroclival. Resection left 2o% cavernous sinus & Meckel's cave region. 3.2, 2.7 cm fibrous mangled in nerves. I am 7 weeks post op I am anticipating to undergo gamma knife radiation in April. I have been doing research on this also. Last week I experienced 2 small siezures & now am on high dose of Keppra. Helping so far. Hanging on for the ride!!
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2 ReactionsBenign Meningioma in cavernous & sphenoid sinus & optic nerve
Diagnosis: Inoperable. Noticed left eye so being swollen. Imaging revealed a sphenoid sinus mass that extended into dura & bilateral cavernous sinus, Meckel's cave left orbit.
IM STARTING 30 ROUNDS OF radiation today. Very worried about my eyes/vision. So far, they are fine. Pituitary Gland will be fried permanently. Anyone else dealt with this? Radiation problems? Hormone problems? How long before effects were noticeable. I'm a 52 YO healthy male. Thanks for reading....scary times.
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1 ReactionHello @jv0000 and welcome to Mayo Clinic Connect. How great that you are in good health otherwise as you start on this radiation journey.
I happened to find a discussion on on the same topic so you will notice I moved your post here:
- Cavernous sinus meningioma: https://connect.mayoclinic.org/discussion/cavernous-sinus-meningioma/
I did this to allow you to more easily connect with other members such as @lyndi @fiddlinchuck and @jrt26 who have shared about their meningioma experiences already.
I wonder how your first few days of radiation has been going for you?
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1 ReactionHello @jesslo78 and welcome to Mayo Clinic Connect. Lovely photo of you and your pup! I'd like to encourage you to upload that photo as your profile image if you are interested. If you need help, you can refer to the "How to Add and Edit My Profile" section here: https://connect.mayoclinic.org/help-center/
Members such as @lyndi @fiddlinchuck @jrt26 and @jv0000, who have shared about their meningioma experiences already, may be able to come back in to connect with you and where you are on your journey.
You seem to have a very positive mindset. What is your secret and what could you use for support from other members?
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2 ReactionsHad radiation for frontal meningioma 5days a week. Minimal radiation side effects. Tired was only effect. Then after 14 months and Avastin and Sandostatin I am on watch and wait since tumor has some recurrence. Drugs did not stop growth. Will start radiation again in 3 months if tumor has increased significantly . Comments are welcomed and any experiences others have had.
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1 ReactionHi there,
I, too, have been diagnosed with a meningioma of the right cavernous sinus/Meckel’s cave. There’s discussion that it might be a trigeminal schwannoma so the neurosurgeons aren’t quite sure which kind of tumor it is. I’m seeing Dr. Demonte at MD Anderson. I live in Atlanta. I’m 46 years old, and my tumor was discovered after just a crazy dizzy/unbalanced feeling I had post back surgery last year. I was also very forgetful and I’ve had awful mood swings and personality changes. In a nut shell, it has been a nightmare. We are watching and waiting. I go back in June for more imaging but ver since I’ve been diagnosed (august 2022), I’ve had headaches which I never had. Placebo effect? I don’t think so. My energy levels are way down as well and I wonder if it’s bc of the tumor or my mood/depression. It helps to hear others talk of their challenges. Praying for all who go thru this.
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1 Reaction7 of 30 radiation treatments down. I almost immediately experienced nausea and headaches continue. Thankfully Zofran (sp?) works very well for the nausea. So far, it's not fun, but it's manageable. Prayers for everyone going thru this crud!
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4 ReactionsMay I ask who your doctor is at ucsf.
I am waiting for an appt.
I have same diagnosis.
Thank you
My neurosurgeon was Dr McDermott but he moved to Florida. My Neurologist are Dr Gelfand and Dr Gerdts. You are in good hands at UCSF. Let me know how it goes or if you have any other questions.
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1 ReactionI sure will. Thank you.