Meningioma: Anyone else? I'm frightened

I do have meningioma and pituitary glande adenoma too .. but I can't keep watching because it causes moderate hearing loss and vision trouble .. I keep hearing noises in my ears which need me to a freaking lifestyle.

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.

They have to go through the sella turcica at the back of the sinus, so they needed something to graft into that place to close it off. I don’t know why they use the IT Band, nor why it had to be such a large piece. It’s a very small (a few millimeters) hole they go through.

All the surgeons I have seen have told me to wait and see. It seems crazy to me since it’s near my optic nerve on the right, pushing on my pituitary gland and around my carotid artery. Maybe it’s the size that they feel like they have time but I don’t see how. This surgery sounds terrifying. I’ve had some drs at Mayo tell me the location is considered no man’s land. Other surgeons say they could get some of it but not all. It would require removing some bone as well.

Losing my vision has been so scary and upsetting. The worse is being told not sure if the treatment will work.
I don’t know if they are hesitant for surgery because of the unknowns with my sight or because I’ve had two surgeries already this year. Drs keep saying I’m not a sick person but it feels like it cause my entire life has changed in 4 short months. I am unable to drive, my mom has moved in to help me with my 3 young kids (5,7,9). I’ve been referred to Braille institute to learn how to manage with my low vision.

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!

Unfortunately I did not have much luck for headaches. My headaches were do to the swelling and pressure so pain meds didn’t work much at all. A cold Ice pack was the best thing I could do. Sorry. Best of 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.

I’m sorry you’re going through all of this. I need to keep in mind the good and stay positive. Stay strong! It’s crazy how different surgeons opinions are about something so similar. It is scary, but I’m sure you’ll do well if you have to have surgery. I wish I could help or had some wisdom for you.