Cavernous sinus meningioma

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.

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.

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.

Hello came across your post regarding Meningiomas. I was diagnosed with falcine meningioma in 2019 (double vision and dropped right eye lid) was assured the symptoms was not associated. 2022 treated with gamma knife. Fast forward to my most recent annual follow up, my mri revealed also CSM which was present in my 2022 mri but never noted. Im in disbelief and not sure what the next steps are. I was reassured had they saw it in 2022 they would not have treated it with GK as its such a delicate area also they say its stable and no change. I feel blind sided and just trying to consult with various team dr.

I’m 42 years old and doctors found a meningioma on an MrI in June 2024.

The tumor is about the size of a grape located on the right side cavernous sinus and cranial fossa/sphenoid wing (multicompartmental). It’s near my pituitary gland , carotid artery, and optic nerve behind my right eye. While the tumor is pressing on some areas, it hasn’t caused narrowing of the blood vessel, and it’s unclear if it’s affecting my optic nerve yet.

My CSM was found due to visual loss in left eye and now right eye. Doctors don’t believe my symptoms are related since my tumor is on the right and my symptoms started on my left.

I have seen 3 neurosurgeons…
One is Southbay California, Mayo Az, and one in San Diego. I’ve been told inoperable by Mayo AZ. The California surgeons say absolutely operable just won’t get all of the tumor. However they are not eager for surgery since they say I don’t have substantial symptoms from meningioma. We are watching and seeing every 3 months. Doctors aren’t wanting to do gamma knife or any radiation due to not being near my pituitary gland and optic nerve and concern with damage.

I have gotten some great doctor names from UCSF. So that’s another option. My vision problems are stemming from autoimmune retinopathy so I am navigating that.

I’m here to hear everyone’s experiences. I’m also on another support group re meningioma to hear everyone’s experiences and find great doctors. I am praying for all those still struggling and find hope in those who have managed to get treated and move on.

Citychica: I think we've communicated before. Like the person you responded to, roz0606,
I also had a meningioma that was actually visible on a scan in 2018 but wasn't cited by the radiologist. In 2023 I saw a neurologist who took the time, while in his office, to go through all my scans and found it. Then, we knew that it had actually been there for at least 5 years. If the radiologist had cited it in 2018 perhaps it would not have been just 1/16th of an inch from my optic nerve when I needed to make a decision about what to do with it. As I've said before, the aforementioned neurologist, another neuro doctor in the South Bay (San Jose) both told me it was inoperable because it was only 1/16th of an inch from the optic nerve. Thankfully, the neurosurgeon at UCSF said he was confident he could remove it safely. My point here is that I wouldn't base my decision to move forward on whether you're having symptoms alone. You wouldn't want it to grow so close to a critical structure, while waiting, that you're compromising your choice to have it removed. I was at the absolute threshold of having the choice to surgically remove my meningioma. I think I gave you the name of my neurosurgeon at UCSF and, if possible, I'd try to get that 3rd opinion.

I’m glad you’ve had some good consults with doctors. I’m surprised to hear Mayo say it’s non-operable since in the exact spot mine was and they removed mine through my sinuses. I’m wishing you the best and hope everything comes out beautifully for you.

I would be interested in hearing of other support groups or names of recommended neurosurgeons. I don't know if you can share that information. I've only been to Mayo in Arizona. They want to see if my tumors have grown so I go back in three months for another MRI.