Meningioma: Anyone else? I'm frightened

Posted by pixie49247 @pixie49247, May 12, 2023

I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.

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poncei1991 | @poncei1991 | Oct 29 12:25pm

In reply to @jasonl1012 "It is scary to hear. I was diagnosed in May and was healthy too. Crazy how..." + (show)

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

jasonl1012 | @jasonl1012 | Oct 30 2:58pm

In reply to @poncei1991 "I so agree. Hang in there. Will you be having surgery or will they just watch..." + (show)

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

poncei1991 | @poncei1991 | Oct 30 3:08pm

In reply to @jasonl1012 "I had surgery at the end of August. Waiting for my first post op MRI to..." + (show)

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

rwiltgen | @rwiltgen | Oct 31 8:23am

In reply to @mono21 "Hi, My name is Monique. I was hit by a drunk driver and taken to the..." + (show)

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.

jasonl1012 | @jasonl1012 | Oct 31 8:50am

In reply to @poncei1991 "Was the surgery difficult? Sorry to hear they couldn’t get it all. Hopefully they got most..." + (show)

They went through my nose and sinuses, which I thought was a better approach than and open craniotomy. I still have sinus issues but hopefully that will go away. My left eye has a blurry spot due to the tumor was pressing on the optic nerve and wrapping partially around it. He said he got it removed from the nerve completely. The spot is very far in my peripheral vision so that’s good. They took a graft from the IT Band on my left leg which was a lot larger than I expected, about a 6 cm incision, which has a combination of numbness and soreness. The first month was fairly rough with double vision but that is completely gone now. They are hopeful all these symptoms will eventually go away. I will need radiation therapy for the remaining tumor at some point

steveomalley | @steveomalley | Oct 31 10:18am

In reply to @jasonl1012 "I had surgery at the end of August. Waiting for my first post op MRI to..." + (show)

Happy to hear you made it through the surgery and thank you for posting. I am in a similar situation in that my M is also wrapped around a middle artery but I am in a wait and see if it grows mode at this time. Best of luck and keep us posted.

citychica | @citychica | Oct 31 11:15am

Hi there, it’s Naomi. It’s been a journey. My meningioma was found when I started losing my vision however, the doctors don’t believe the meningioma is causing my vision loss and have diagnosed me with autoimmune retinopathy as of right now the meningioma has taken a backseat as we wait and watch to see if it grows. Doctors are trying to stop the vision loss with immune suppressant therapy. I was in the hospital in August to get steroids. And have steroid implants in both my eyes now to stop the conditions that are causing the loss of vision. It’s been quick in that I am considered legally blind now. I am able to see centrally, but my peripheral/field vision is greatly impaired. we were told there’s a rare chance, the meningioma could be causing an auto immune response. Doctors aren’t eager to have surgery since I don’t have other symptoms. I have been told that the entire tumor would not be able to be removed due to its location around my carotid artery in the cavernous sinus.

mkoch | @mkoch | Oct 31 2:40pm

In reply to @jasonl1012 "They went through my nose and sinuses, which I thought was a better approach than and..." + (show)

Jason, I'd like to ask why they took a graft from your IT band?

poncei1991 | @poncei1991 | Oct 31 6:42pm

This all still seems scary especially if it involves eye sight. I had a retinal detachment in my left eye in 2017 and corneal surgery in the same eye in 2019. Now, I'm wondering if those two issues with my left eye is because of the growth against my brain is on the left temporal area.

joumana | @joumana | Oct 31 11:26pm

I do have it .. and also discovered accidentally..
I hear too much noises and feel pressure in my skull and ears .. can't sleep and can't listen to anything.
I must have my surgery in 3 weeks ... and I am worrying a lot.