Meningioma: Anyone else? I'm frightened

Monique:

Hang in there. I have a meningioma that was partially resected late 2020 and had Gamma Knife treatment in early 2021. In fall of 2021 they did corrective eye surgery. Today, My eyes are straight, my headaches are gone and I work full time and enjoying a very fulfilling life.
You are in good hands.

Was the surgery difficult? Sorry to hear they couldn’t get it all. Hopefully they got most of it.

I had surgery at the end of August. Waiting for my first post op MRI to see what remains. They couldn’t risk going after all of it because it is wrapped around my internal carotid arteries unfortunately

I so agree. Hang in there. Will you be having surgery or will they just watch it to see if it grows?

It is scary to hear. I was diagnosed in May and was healthy too. Crazy how fast life can change

My name is Jane. My nonmalignant Meningioma was found quite by accident too. I went in for my yearly lab work and found out that my sodium was extremely low. After being referred to a kidney specialist who sent me for a cat scan of my brain, the cat scan revealed I had a nonmalignant Meningioma. It is hard to believe but that can be a cause low sodium. I was then referred to a Neurosurgeon. I will see a Neuro Onocologist first and then a Neurosurgeon. The thought of it all is very scary to me. I'm not sure what to expect since I've usually been a healthy person.

Hi,
My name is Monique. I was hit by a drunk driver and taken to the hospital. Anyway they did a CT on my head and found out that I had Meningioma. I have the symptoms of losing eye vision and severe headaches. I’m waiting to have another CT and hopefully go back to the Mayo to get seen.
I’m scared also.
Good luck to you.

I had my procedure at university of Pa. My surgeon told me that either it would stop the tumor from progressing. It may shrink or go away, but, it could take years. The whole idea is to keep it from growing. My tumor was a little calcified also which was a plus.

I am a 10-year survivor-thriver of a R spheno-orbital meningioma with cavernous sinus involvement. I am in agreement with many points expressed by @lucy2lucy regarding how this unknown-caused and incurable brain disease manifests itself from one individual to another. As a founder of a non-profit that provides services to meningioma brain tumor survivor-thrivers and their caregivers, I offer these guided suggestions:
1. Become knowledgeable about the meningioma tumor type, grade, and location.
2. Always be accompanied by someone who can take notes during the discussion with healthcare providers. Someone needs to be attentive to the information being shared other than you.
3. Make a list and ask all your questions. No question is stupid.
4. Most doctors know very little about this brain disease (although they profess to) because there is very little empirical research that has been or is being conducted on these types of brain tumors.
5. Obtain more than one medical opinion about the treatment options available to you for your specific meningioma tumor. Every treatment option available IS NOT appropriate for all types of meningiomas.
6. If the doctor fails to be responsive to your inquiries including questions about his/her background in treating YOUR type of meningioma, MOVE ON and seek another opinion.
7. As @lucy2lucy states, the word 'benign' is used by doctors regarding meningioma brain tumors. The term is misleading in that it is used to indicate that meningiomas are non-cancerous. While meningioma tumor cells may not have cancerous properties, these tumors are debilitating to the vast majority of us who survive and thrive with them.
Lastly, fear is a natural response to hearing that you have a meningioma. They are almost always found/diagnosed unexpectedly and most time with little to no prior symptoms.

I do so hope these suggestions are of some assistance to you.

Go Well,

I was told no radiation therapy will shrink or destroy the tumor. That they could only say it should stop its growth for a period of time.