Meningioma: Anyone else? I'm frightened

I have been told that. I could have symptoms after surgery as well. I’m glad your surgery was successful. Will you be getting radiation for remainder portion left in? Did all pathology reports come back benign?

Thank you so much for posting this.
My mother was recently diagnosed with possible Meningioma. She was having debilitating headaches for several days and tried to drive herself to the ER. She couldn't. That was almost a month ago, and still no relief. It is taking so long to get anything done. She just had MRI yesterday. We went back to to her oncologist at Shands here in Gainesville, FL. I am seriously considering taking her to Mayo Clinic in Jacksonville, because her next appointment is not until 11/19/24. Oncologist prescribed Hydrocondone it did not work. She then broke out with Shingles on her scalp so they tried Gabapentin, that didn't work either. Has anyone found any relief for the headaches ? What did you do?

I am sorry for your diagnosis and I understand your fear. It is scary but things can go very well for you. I had a large milignant miningioma removed the end of February at Desert Banner with Dr. Menéndez. It was discovered because I was getting dizzy and sick and having a lot of pain overtime to the point I would almost pass out. It came to a head when I finally was so bad I went to the ER and they found it in a CT. Long story long. My surgery went great. I only spent a few days in the hospital recovery unit. Mine was also close to my optical nerve. In recovery I had balance issues shaky hands and vision strangeness for a few weeks. I passed out once when home unexpectedly during recover and was airlifted back to the hospital but everything was ok. Through physical therapy and rest doing what the Dr asked I was fully recovered and back to work full time the first part of June. Sometimes now I have to focus hard to keep my thoughts organized and coherent but not so much it affects my life at all and I am much more emotional and I am learning to manage my emotions through therapy. I have been truly blessed. There isn’t anything I used to do I can’t do now because of my crainiotomy. It saved my life. Thanks to everyone sharing their amazing experiences here. I will pray for every here that is going through this and their families. My family also went through a lot even tho it was my tumor. Find support everywhere you can. Good luck!

Sounds like you've been through a lot. I think I read previously that you still have radiation therapy ahead of you. The best of luck in your on-going recovery.

It’s a difficult choice. I was told I should get surgery before I start getting symptoms. That I shouldn’t wait until I start getting double vision or going blind. I don’t know honestly. I had no symptoms and now I have a few.

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,

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.

my doctors have told me many people never get symptons and never get much growth ….and can stay on wait and watch for ever.

My doctors and i don’t believe in non-essential surgery

I will never know if I truly had to have surgery. Maybe I never would’ve gotten symptoms.