Cavernous sinus meningioma

roz0606: I had a left cavernous sinus meningioma. It was 1/16th of an inch from my optic nerve. The neurologist I initially consulted said, "No one is ever going to operate in that location." He referred me to a radiation oncologist in San Jose. And as you stated, the radiation oncologist said it was a dangerous area even for radiation. In fact, he said he wanted to consult with the neurosurgery department at the University of Calif. in San Francisco for their advice. Long story short, (as I've posted about my experience more than a few times and I'm sure others are weary of reading about it) I sent my MRI scans to UCSF digitally from my local hospital and made a ZOOM appointment with the neurosurgeon at UCSF who is in charge of overseeing all meningioma surgeries as well as the radiation clinic. He told me the best line of treatment, if possible, is to remove any meningioma. So his advice to me, upon reviewing my scans with me and my husband, was to have the surgery. I said to him, "But two doctors have told me no one is going to operate in that area," His response was, "I do one or two a week." Long story short I had the surgery, as of this very week, 2 years ago. Two weeks after that I was passing out Halloween candy. I encourage you to have a video zoom visit with Dr. Theodosopoulos at UCSF. My local radiology clinic in the small city I live in had a direct link in their system to transfer my MRI scan to UCSF. Tanya is the one who schedules both in person visits and ZOOM visits. The number is 415-353-2209. Hope this helps.

Hello, came across your post and was wondering which route you went either if any for treatment? I also have a right CSM.

Good afternoon. Mine was treated with surgery through the nose to remove. They were only able to remove a portion due to its proximity to an artery in brain. The remaining g portion is now being treated with Lanreotide. I’m still having issues getting figured out what’s going on with me chemically. My hope for you is that yours isn’t hormonal and they can remove it completely. Hormonal and still present can be treated but appears to add more treatments and possibly procedures. Do you know if yours is producing or affecting hormones? If so what are your symptoms? All the best

Hello
I just found this post as I just joined. I have the same location, meet with neurosurgeon this coming Friday. How did they treat your tumor? Hope you are doing well

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.

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.

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 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.

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.

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.