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

Interested in more discussions like this? Go to the Brain Tumor Support Group.

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 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.

linnyg | @linnyg | Dec 5, 2023

In reply to @bevpac "I am anxious to hear what happened at your appointment, linnyg as it is now November..." + (show)

Hi! I had 5 stereotactic treatments in March, specifically for the M near my left optic nerve. A few days after the last session, I intermittently lost vision in left eye, each time briefly, for a couple of days. Vision stabilized and I was able, with the NS’ blessing, travel to New Zealand with my dragonboat team. We’re all breast cancer survivors and used to ‘health glitches’. 😊 Had follow-up MRI in May, showing slight shrinking of optic nerve but no change in CS M. Headaches, facial numbness, earaches, tinnitus continue. Had 6-month MRI 3 weeks ago. Optic nerve is back to where it was pre-radiation, CS same. So I’m back to square one. NS said to monitor my vision and call asap if a change. If no change, MRI in 6 months. And so it goes.