Meningioma: Anyone else? I'm frightened

I was told by my primary that I would be seeing a neurosurgeon not a neurologist and that it wasn’t an emergency but not to wait 6 months down the road. To me that sounds kinda urgent.

True that! The only good thing about meningioma is that although it is troublesome it is rarely fatal. A radiation oncologist told me that with the resection and radiation therapy I stand a good chance of living out a normal lifespan. The odds are in our favor.

I think everyone who suddenly is faced with something growing in his/her head will experience anxiety. The question is how to deal with it. The wait and see approach is prudent to understand how the meningioma behaves. The scientific publications state that 85% of meningiomas are benign. You don't want to rush into a treatment that causes more harm than good. "But the wait and see approach" means dealing with the unknown and that causes anxiety. We are all in the same boat.

I also had a scan for migraines. I was told I have a small meningioma, and prior scans for the last 3 years did not show it.
Neurological said it’s probably been there, but too small to show. Currently, she is taking watch/wait approach.. I am quite upset about this diagnosis.
It’s difficult not to think about it.. She doesn’t seem concerned.
I got a second opinion. They match. Still; I’m frightened. Any one else have a similar situation?.. Thank you.

I too received a meningioma diagnosis after a ct scan for migraines. I was as told it’s very small. I have an appointment this week with my Neurologist. I’m going to ask about size.. She also said it’s probably been there for 3-4 years. Past scans never showed it.. am very frightened.. We are taking the watch/wait approach..
Any one else experiencing anxiety over their diagnosis?

Warmest regards, I was diagnosed with a 2cm calcified meningioma one and a half years ago. It was found when I had a CT scan due to a concussion; as most meningiomas are found incidentally. I followed up with a neurologist and she ordered an MRI with/without contrast. As expected, it had not grown, but a second one was unexpectedly found that was too small to have been seen on an CT. I had a follow up MRI 6 months later. I started having headaches, vision changes, balance issues, etc., and repeated the MRI a month early. It still had not grown, as expected. While discussing the 1st growth and the discovery of the second, we did a review of my medications for other issues that led to making changes with those, in consultation with the prescribers. The changes I made were lowering the dosage of my GLP-1 and going off of Prozac (after being on it for 30 years). WHAT A DIFFERENCE! All of my symptoms that I was relating to the meningiomas, went away. Close your eyes and take a deep breath. The initial shock can be very frightening. Make a long term plan on how to approach living with the meningiomas. Find a provider who you can fully trust. Take someone into your appointments so they can ask questions that you may not have thought about or forgot. They can be a reference point for after your visits if you think of something that you may missed or forgot from the appointments. Basically they can act as an advocate for you and help put a perspective on your status. The Mayo Clinic has some fantastic educational materials that can be sent to you for free. I strongly recommend them. They step you through the journey with the twists and turns that we live with from the moment of the initial shock of the diagnosis. I wish you all the best and believe that there are positive outcomes when dealing with tripping over this pebble in our road of life.

Thank you, both kdog and Maryann! I’m not a confrontational person, so was afraid to ask the Doctor, figuring they know what they’re doing. I’ll ask the neurologist if I can lower or quit the Keppra. It’s making my life really, really miserable!

Hi all. I recently had a CT scan on Friday and it showed a calcified meningioma with the measurements. I’m still waiting for the doctor to read the results and call me back, it is now Monday and I’m scared. I don’t know what to do at this point. I’ve been having symptoms for years now and I thought it could be my medication or just me getting older but I’m 49. I just don’t know what to do?

I agree with kdog-that sounds like a lot of Keppra. I was only on Keppra for a short time,
( 4 weeks) after my craniotomy to remove a meningioma. I would get a second opinion from the neurosurgeon who performed the surgery, or any neurosurgeon, as per your last sentence it seems you are consulting with a neurologist on this.

Hi,
Kepra 4x daily for 3 1/2 years seems like a lot. I was on it until the 6 week post surgery checkup. The dosage was 2x daily, don’t remember the per pill dose. I would simply ask the neurologist if I could reduce or eliminate the kepra especially since it may be causing undesirable side effects. Remember you’re the boss.