Meningioma: Anyone else? I'm frightened

I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye as the tumor is on the right and wants to do a wait and see if it grows in 3 months. Wants me to continue to see my eye doctors. I am seeing an eye doctor at UCLA in 11 days.

Also if they were to remove the tumor, because where it is near too many nerves, They wouldnt be able to remove all of it. Otherwise, they would treat with radiation which wouldn’t shrink it but stop growth.

I’m seeing another surgeon Monday so we will see what they say. I was told the meningioma is 3.6 cm long and 2.4 cm wide at its widest. Curious if I should go to Mayo.

Hopefully you heard some comforting news from your neurosurgeon.
Knowing you have something growing in your brain is always a scare. I was diagnosed (by accident, like you) 6 years ago. We decided to wait and see how fast it grew-3 years later I talked with another neurosurgeon at Mayo and found it was time to remove it. Because of its size and where it was (size of a lime and attached to both sides of the brainstem) we decided to operate with a full side to side craniotomy. I think the unkown is the scariest part, finding a surgeon that YOU are totally comfortable with is important for that stress level and anxiety that builds. It now has been three years since my surgery, I did have to learn how to walk again (still have a few issues) but the operation, care and after check ups have been amazing. My after surgery meds were Tylenol!
With the first Neurosurgeon I saw, I was told for 3 years "pretend it's not there" - right....not!!! It is AMAZING what surgeons know and how they can work on the brain like they do-successfully. I feel God was by my side the whole way and we will be in a group that can offer testimonies and comfort to many to come. Good luck and may God bless you and remove any anxiety you may encounter. Picture of tumor before surgery.

What did the neurosurgeon say about the meningioma?

Today is the day I see the neurosurgeon. I have another appt scheduled for Monday as well. As many opinions as I can get. I have 3 young children ages 4-8. I am also getting head and back pain now. I believe it’ll have to be removed but am hoping for less invasive procedures. I am very interested in knowing what people’s recovery has looked like.

I had it at Advent Health Hospital in Orlando Florida and Dr. Field was my neuro surgeon. He is an expert in Gamma surgery. He is really nice too. It's day surgery and I have had no side effects.

Where did you have your procedure?

i have similar types of vision problems and have for many years. Supposedly, it’s unrelated to my small meningioma that was found “incidentally” during a brain MRI in 2018. There is a remedy for that type of vision loss. It’s called “prisms” and is prescribed as part of a glasses RX. You want to find the most qualified practioner in your area fitting prisms. I happen to live in South Florida where the top eye institute in the country is located. I see a neuro-opthamologist who partners with a highly specialized optometrist who fits prisms. They can be designed to open your field of vision considerably. You don’t see prisms when you look at a pair of glasses but
they are designed and constructed to create an optical illusion.

Thank you, that helps with the stress and anxiety a bit. I appreciate it! I’ve been somewhat of a mess leading up to surgery. I’m glad to hear everything went well for you and hope to have the same experience soon. I just want to have a good life with family and friends and start working again.

Yes only the blurry vision. I have always had trouble with my ears plugging up. I went to ENT and they said they couldn’t find anything wrong with my ears. I mentioned I could hear my heartbeat and he immediately ordered a CT angiogram that’s where the mass was noted an hour and a half later they had me in for an MRI with him without contrast, and they immediately referred me to neurosurgery

Your post has lifted my spirit. I'm 64 and having a craniotomy this fall. You said it wasn't so bad, I'm trying to stay positive that will be the case for me.