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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bevpac | @bevpac | Nov 29, 2023

Wow - I must say I was hoping your symptoms improved. It sounds like you got worse and I’m so very sorry to hear that - for you and as I face the same issues - for me. Right now my symptoms are irritating & some symptoms are worsening but are tolerable and I don’t want them worse. Goodness.
Do they say you will recover from those new symptoms? I pray they resolve.

blessedbyu | @blessedbyu | Nov 26, 2023

In reply to @bevpac "Was your surgery a year ago now? How have your symptoms improved? Did you have any..." + (show)

My surgery was 3 years ago October. The major original symptoms I described that alerted me to the tumor ended once the tumor was removed, other symptoms (cognitive, executive order functioning) remained and in some cases got worse and new symptoms (extreme neuro-fatigue, vestibular, auditory, limbic, autonomic, stimulation sensitivity...) emerged. I am fortunate that with the majority of the tumor removed surgically I have not had to have radiation. I have annual MRIs to watch the bit that remains.

bevpac | @bevpac | Nov 25, 2023

In reply to @blessedbyu "My meningioma tumor was also in the same location and super friendly with my carotid artery..." + (show)

Was your surgery a year ago now? How have your symptoms improved? Did you have any radiation in addition to your surgery?

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.

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.

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!

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?

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.

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?

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.