Diagnosed with Meningioma

Actually it’s a PPO but I’m sure it’s the doctor. He charges the same amount no matter who I see I’m not going back I’m done with him. I want someone that specializes in this.

rh61: It sounds to me like your insurance is an HMO. You're more apt to be seen by nurse practitioners rather than the doctor. That would also explain why you were told to wait a year before getting your repeat scan instead of 6 months. You/we need to be very proactive in advocating for the best healthcare available to us.

I’m reading from the report It says left frontal subcentimeter extra axial.
I have ask repeated where exactly it is and the answer is ask the neurologist but he won’t see the patients only get to see nurse practitioners.

dchrzano: .6 centimeter falcine meningioma NOT 6 centimeters (typo error)

The one I had removed, I was told 1/16th of an inch from my optic nerve was, "dural based lesion along the left middle cranial fossa abutting the left cavernous sinus and left foramen rotundum." Whatever that means. I just know 2 neuro doctors told me not operable given the location but it was removed successfully. MRI follow ups show still not there. BUT, I am doing active surveillance on an .8 centimeter "enhancing lesion (meningioma) along the left aspect of the posterior superior sagittal sinus without evidence of superior sagittal sinus invasion." A follow up scan calls it out as "left posterior parasagittal." I also have a 6 centimeter one called out as "small right posterior falcine meningioma." They have not grown in the past year and I've already been told that if they do I would have radiation and not another craniotomy. So to answer your question, I think mine is also parasagittal but not invaded the superior sagittal sinus, and I sure hope it never does.

Where was yours located? Mine is l parasagittal near sss.

Yes, rh61. Please see a neurosurgeon. A neurologist told me my meningioma was inoperable. I saw a radiation oncologist who told me the same thing. Then I saw a neurosurgeon at UCSF and he said, "No problem, I do one or two a week in the same location." That second opinion from a neurosurgeon is paramount.

Thank you !
Did you have pain from the meningioma ?
Did you have any side effects from Gamma Knife afterwards?
I have pain on the top of my head. Pain pills work most of the time but the meds make it where I can’t function like I need to.
I am currently looking for someone to give me a second opinion.
I will probably need to find someone outside of Oklahoma.

Hi. By mistake through an X-ray for another issue it was discovered that I had a Meningioma (apparently it showed up on an X-ray in 2006, but, no one told me) that was in 2021. My surgeon watched it, and I had Gamma Knife at 6mm. He didn’t want it to get any bigger. I would suggest a second opinion. I had the Gamma Knife (Univ. of Pa) in March, 2024. Good luck.

I didn’t think it was.
Thank you for responding. I haven’t even seen the neurologist but twice, it’s always one of the Nurse Practitioners. I’m looking for a new one now. I will take your advice and find a neurosurgeon.