Anyone else with a Meningioma near the sinus vein?

Posted by namesash @namesash, Dec 15, 2024

Hi, I’m in my late 20s and recently had an MRI on my brain done because I was having what my neurologist said were “non-epileptic seizures.” They found a meningioma near the sinus vein measuring at about 2.2 x 1.9 x 1.7cm. I’m having all the symptoms that were described to me and yet I can’t see a neurosurgeon until February. I’m quite scared, more so since I have a young toddler, but also because my neurologist said it’s so close to the sinus vein and it’s a decent size that she’s a bit concerned herself. I know more times than not they are benign but there still is a chance it could be something more. I’ve learned to take things with a grain of salt as I’ve had a rough life but this is something I never saw coming…

Interested in more discussions like this? Go to the Brain Tumor Support Group.

I’m sorry you’re having to deal with this. It’s not fun and it’s understandably scary. Whether it’s benign or malignant, it’s a thing in your skull that doesn’t belong there. Your skull is large enough for your brain; if you add something else, it’s going to affect you. Have you asked your neurologist for any recommendations of neurosurgeons? She may be able to get you in sooner. That’s awful to wait until February.

I have a meningioma pressing on my L transverse sinus. Because of the location of mine along with the fact that it’s messing with my sinus, they consider my tumor inoperable.

Every person and their tumors are different so don’t be scared by my story. Trust me, my story sucks.
I’d have my neurologist or even my primary doc help me get in with a neurosurgeon sooner to ease your mind so you can enjoy your holidays.

REPLY

Thank you for the comment. It feels so reassuring to hear others stories. I hope you’re doing well too and enjoy your holiday too.

My neurologist is the one that referred me to the neurosurgeon I’m scheduled with. I have my name on a cancellation list, so I hope that something sooner comes up. I just saw my primary care and had some bloodwork to go over - it seems a lot of my health issues are correlated to the tumor and possible other health issues. I’m hopeful for a good outcome!

Thank you again, I greatly appreciate your kind words so very much. I hope you’re doing well! ❤️

REPLY
@namesash

Thank you for the comment. It feels so reassuring to hear others stories. I hope you’re doing well too and enjoy your holiday too.

My neurologist is the one that referred me to the neurosurgeon I’m scheduled with. I have my name on a cancellation list, so I hope that something sooner comes up. I just saw my primary care and had some bloodwork to go over - it seems a lot of my health issues are correlated to the tumor and possible other health issues. I’m hopeful for a good outcome!

Thank you again, I greatly appreciate your kind words so very much. I hope you’re doing well! ❤️

Jump to this post

@namesash, I can imagine that you're scared, especially with a young toddler to take care of. You're not alone and may wish to join this active discussion:
- Meningioma: Anyone else? I'm frightened https://connect.mayoclinic.org/discussion/meningioma-9/

I know that it is stressful to wait until February. If travel is possible, you might consider requesting an appointment at one of the Mayo Clinic locations http://mayocl.in/1mtmR63

In addition to the non-epileptic seizures (scary enough), what other health issues or symptoms are you experiencing?

REPLY

Prayers for you and your family. Keep and grow in faith. Your story sounds a lot like mine. A couple of months before I was diagnosed with the same tumor that was on the right side of my head, my wife told me one morning that she thought I was having a seizure in my sleep. Fast forward a little, I was talking with our son and a friend of his when the left side of my face went numb, drooped and seemed like I was having a stroke. I thought maybe I was just tired and went to bed but I never went to sleep. I had a hard time taking a full breath and I had to go to the bathroom every hour. The next morning I went to the hospital and found I had a 6 cm tumor. I had not really noticed anything up to the point of the stroke like stuff. Anyway I ended up at KU Med center. Dr Chamoun is an awesome neurosurgeon. At my first appointment he laid out the plan and told me we needed to get it out asap. He said if it where him he wouldn’t wait 2 weeks. So I got set up to have it removed. It was easy. I was in and out of the hospital in about 48 hours. I spent about the same amount of time in the hospital to have a kidney stone removed and I was almost 53 getting my thinker tinkered with. I would defiantly research and find a good Dr and get in and get it out sooner rather than later. The first thing I had noticed after surgery when I woke up was I could breath out of my right nostril. I always thought I had a sinus infection. My nose would not stop running for quit a while though, just a heads up. God bless and provide for you, May he lead you and your medical team giving you the strength and courage. May He also provide the wisdom to the Dr, guiding his hands, providing his sight and wisdom. Love for you all.

REPLY
Please sign in or register to post a reply.