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

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linnyg | @linnyg | Jul 22, 2023

Follow up....In March, I had 5 sessions of stereotactic radiosurgery. My goal was to be able to accompany my dragonboat team to New Zealand to compete in the Intnl. Breast Cancer Survivors Dragonboat Festival in late April. NS said I 'should' be able to. 2 days after last treatment, lost vision on & off in left eye. Brain swelling plus being weaned off steroids. Vision stabilized within days. NS cleared me to travel! Trip was spectacular and uneventful and super-special. Still have headaches and left-sided numbness. MRI in May showed a bit of shrinkage in left sphenoid M (AKA 'Cher'). No change in CS M (AKA 'Sonny') - there is a black spot in center of it which 'could' indicate necrosis and imminent shrinkage. Or not. It is now late July. I've recently started having sudden, intense earaches which last about 5 min. At first, thought it was a tooth issue. Cleared by dentist. Looks like I'll touch base with the NS. This meningioma stuff is the gift that keeps giving.

courtneyizquierdo | @courtneyizquierdo | Jul 23, 2023

I have a right meckels cave meningioma which is close to cavernous sinus …tough area.
There’s a wonderful doctor at Stanford medicine who operates in this area a lot.
I live in Atlanta,GA…I have telehealthed him twice. He will be my NS when I need it.
His name is Dr Juan Carlos Fernandez-Miranda. Look him up and call his office. They’re incredibly efficient at getting back to you,etc. I sent all of my scans to him. He’s an incredible man and a tremendous surgeon. I’ve heard that from many doctors from Emory in Atlanta. Best of luck. Please keep us posted. Many prayers to you.

bevpac | @bevpac | Nov 15, 2023

Where are you in this process. I see you first posted in 2019. I have the same presentation and I have an appointment with Mayo in Rochester in a few weeks and I'm reaching out to see what others have done and how they are doing now.

bevpac | @bevpac | Nov 15, 2023

In reply to @linnyg "Thank you so much!" + (show)

I am anxious to hear what happened at your appointment, linnyg as it is now November and your appointment was in January?

blessedbyu | @blessedbyu | Nov 16, 2023

My meningioma tumor was also in the same location and super friendly with my carotid artery and optic nerve. I had my surgery at Mayo in Rochester by Dr Link and his team. What he accomplished was truly miraculous! Similar to you were the off the chart headaches from brain swelling, had a olfactory hallucinations, seizures, memory loss, and visual auras as just a few fun symptoms. I was told to expect 80% removal of the tumor, however I walked out of the hospital with 99% of the tumor removed!!!
Prayers for you to find the best possible treatment and healing.

Colleen Young, Connect Director | @colleenyoung | Nov 19, 2023

In reply to @bevpac "Where are you in this process. I see you first posted in 2019. I have the..." + (show)

Hi Bevpac, welcome. You will be in good hands with the experts at Mayo Clinic in Rochester. I'm tagging @julieannarcand and @linnyg to make sure they see your questions to them. Did you see the helpful post from @blessedbyu, another Mayo patient?

Bev, is this your first time going to Mayo Clinic?

linnyg | @linnyg | Nov 19, 2023

In reply to @colleenyoung "Hi Bevpac, welcome. You will be in good hands with the experts at Mayo Clinic in..." + (show)

Hi! I just had my 6-mo post-radiation MRI 2days ago. Awaiting results. My NSis at Jefferson Univ in Philly. I’ll post when results come in. Thanks for thinking of me!

bevpac | @bevpac | Nov 23, 2023

In reply to @colleenyoung "Hi Bevpac, welcome. You will be in good hands with the experts at Mayo Clinic in..." + (show)

Yes. I go for evaluation this coming Thursday & Friday.
I appreciate all the folks & their comments.

bevpac | @bevpac | Nov 23, 2023

In reply to @colleenyoung "Hi Bevpac, welcome. You will be in good hands with the experts at Mayo Clinic in..." + (show)

Thank you those that responded: blessedbyu, I’m not scheduled to see Dr Link but the NS I have an appointment with looks good too. I imagine all NS affiliated with Mayo are excellent (I pray so). I hope julieannarcand will respond as her meningioma & symptoms are just like mine.