Meningioma: Anyone else? I'm frightened

Jason, I'm glad to hear the endonasal procedure is behind you and you are definitely doing well enough to write an update. My double vision (after a craniotomy for a skull based tumor)
was not off and on, (as you are experiencing) but constant. It did resolve in about 3 months. I wish you continued progress and for you to be feeling your old self soon.

It was difficult. I had to stay over four nights. But doable. Make sure you have someone that only does school-based tumors. Someone that has a lot of experience in the endonasal technique. My surgeons team has done over 4500 of them definitely not something you want a surgeon that does spine, other brain tumors, general neurosurgery, etc. I have my first follow up tomorrow. So far I have double vision off and on, blurred vision, headaches, and some definite pain at the tail bone(whatever that’s from). They took a graft from my left IT Band(outer thigh) for nasoseptal reconstruction. It’s barely sore. Also of note, they will bolt you into a halo so you’ll have 4 sore spots with scabs, just so it’s not a surprise.
Keep on on thriving!

How was the surgery?

Thank you. No word yet.

415-353-2209 (You should be speaking with Tania) Did you ever hear back from Jason?

Yes. I’d love the his number. I definitely also like the idea of a video visit.

Citychica: You are the age of my youngest daughter who insisted I go see Dr. Philip Theodosopoulos at UCSF after 3 other doctors told me my meningioma was not in a location any neurosurgeon would chance to operate.
(My Ear, Nose, & Throat doctor-I was having sinus issues from my meningioma--a neurologist, and a radiation oncologist, who specializes in radiating meningiomas and malignant tumors--all said not doable.) There seem to be some similarities between your location and mine..."lesion along the left middle cranial fossa abutting the left cavernous sinus and left foramen rotundum." Before you give up hope think about consulting with Dr. Theo.
If you have your scans sent to UCSF you can have a video visit with him. That is what I did. I had an hour video visit with him and met him a week later just prior to my surgery. If you're interested I'll give you the number of his scheduler who would explain to you how to send your scans, etc. My heart goes out to you for having to deal with this at such a young age and with 3 children. As I'm sure you've read on my posts before, UCSF is rated #2 in the United States for neurology.

How did it go?

Update on me: I have diagnosed with Uveitis and they do not believe the meningioma is causing the vision loss. I have a significant history of inflammation so they are trying to determine if I have an autoimmune.

I am currently being worked up by Mayo Clinic to determine what to do about the meningioma. Beyond my sight, I have little symptoms related to meningioma. However it is a multicompartmental one and seems if they did try to remove, not all could be removed. It’s in my cavernous sinus and middle cranial fossa and from what I told only 3-4 surgeons in the country would operate as that area is considered “no man’s land”. People don’t come back the same person is what the neurosurgeon said. I am beyond scared of what that means if it grows. All the options sound fairly evasive. It’s not in a place they can biopsy. I’m 42 years old with 3 kids ages 5-8. I am losing my vision and have seen multiple doctors in the last 3 months. Being seen by an ophthalmologist at UCLA. Multiple neurosurgeons. I haven’t responded to steroids they gave me to help inflammation in my eyes.

Will update when we get more answers for Mayo. I have more work ups being done in a week. Prayers are appreciated.

I also had pain in my left sinus. And my left nostril burned frequently for no reason. I went to the ENT 3 or 4 times thinking I had a sinus infection. I was always told no. I went to an endodontist thinking the pain in my sinus was b/c I needed a root canal. (Was told by my dentist that could be the reason for the sinus pain.) 5 years after the aforementioned symptoms started I had tingling down my left arm. To rule out a stroke an MRI of my brain was ordered. I didn't have a stroke but the meningioma was discovered. My primary care doctor said, and I paraphrase, we find meningiomas all the time in older people when we are scanning for something else. Don't worry. They're usually always benign. I'm not a hypochondriac and trusted in that; I didn't go to Dr. Google and read too much about meningiomas. But my symptoms kept getting worse and a year later I scheduled an appt. with a neurologist. He personally reviewed my MRI and said, "You need to get this taken care of." The meningioma was now 1/16th of an inch from my optic nerve. The neurologist suggested radiation as he said the meningioma was in a tricky location to operate. I consulted with a neurosurgeon at UCSF and he said the first choice of treatment is always to remove them if you can. And he didn't agree with the 2 other doctors who said the meningioma was too close to the optic nerve to operate. The end of the story is I did have the craniotomy. The meningioma was successfully removed without damaging my optic nerve. The surgery was not any worse than the mastectomy I had 5 years prior. In fact, in a lot of ways it was easier. My nursing care at the University of California in San Francisco was stellar. I think perhaps I've rambled on too long but actually meant to respond to your inquiry that UCSF is rated number 2 in the United States for neurosurgery. NYU is rated number one. So if you're on the west coast I'd go to UCSF and if on the east coast NYU. Of course, I'm sure the Mayo Clinics are good as well. It's your brain. You need the best of the best.