Newly diagnosed with a meningioma. 2 opinions differ

Posted by wkindel @wkindel, Sep 28, 2017

Symptoms of headaches that wake me at night, ringing in the ears, oddly pretty auras, internal left eye pain and worsening vision lead to an MRI with contrast that found a meningioma just left of center next to the large central vein. Both doctors agree it is most likely benign, but differ on treatment. Since I am symptomatic the first doctor says surgery would be in order. The second doctor says because it is relatively small and typical of a benign meningioma, that we should watch and wait, with repeated MRI's. His reasoning is at 62, the surgery is riskier than the symptoms and the likelihood of cancer. I have read some other entries in this group and apparently the watch and wait approach is common. I have to admit though it scares me a lot to leave something in there that they don't know 100% is non-cancerous, and frankly the symptoms are not fun. Someone mentioned in a post from 2016 that I can send my MRI results to the Mayo Tumor Center and get their opinion. I am extremely interested in doing this. Can someone please send me the contact information so I can arrange it? Meanwhile I am having a mammogram next week to rule out breast cancer that can be found in some meningiomas.

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courtneyizquierdo | @courtneyizquierdo | Mar 10, 2023

In reply to @cowboyup "Is it safe to fly with a left cavernous sinus meningioma?" + (show)

Hey there,
I’ve flown with my right cavernous sinus meningioma….i do notice that I’m more dizzy for a few days after flying. I wouldn’t think there would be any risk in flying, only because I fly to my doctors from Atlanta to Houston and I would think that the doctors would warn me otherwise but I’m just assuming. Check with your doctors. Hope you’re feeling ok and many prayers to you.

cowboyup | @cowboyup | Mar 10, 2023

In reply to @courtneyizquierdo "Hey there, I’ve flown with my right cavernous sinus meningioma….i do notice that I’m more dizzy..." + (show)

Hi,
So good to hear from you!
Thank you for telling about your experience with flying.
May I ask who you see in Houston and what treatment you have had?
I am very anxious about my appointment with Dr. Demonte.
Hoping to find help.
Look forward to hearing from you.
Thanks again.
Jo

courtneyizquierdo | @courtneyizquierdo | Mar 11, 2023

In reply to @cowboyup "Hi, So good to hear from you! Thank you for telling about your experience with flying...." + (show)

I see Dr Demonte as well. You’ll love him and his staff. You’re in the greatest hands.
We have been twice and we are waiting and watching. We return in June. It’s not ideal. But it could be a lot worse, and that is what I keep reminding myself when I get really down about it and overwhelmed.
Hang in there and always feel free to reach out. It helps to hear from others who are walking/have walked this path.

cowboyup | @cowboyup | Mar 11, 2023

In reply to @courtneyizquierdo "I see Dr Demonte as well. You’ll love him and his staff. You’re in the greatest..." + (show)

That is amazing that you are seeing Dr. Demonte! I am really nervous about what they are going to do.
Thank you for your reply. Keep me posted on your progress. I hope that there will be no growth and you can avoid any kind of treatment. All have side effects.
I have been on a watch and see but it has grown.
Thank you. It helps to hear from someone who is going through this nightmare.

cowboyup | @cowboyup | Mar 12, 2023

Has anyone had Proton Therapy for a meningioma?

courtneyizquierdo | @courtneyizquierdo | Mar 12, 2023

In reply to @cowboyup "That is amazing that you are seeing Dr. Demonte! I am really nervous about what they..." + (show)

How long have you known about yours? I found out last august…new to this. Praying yours doesn’t grow too Mine is about 2.6cm , but I don’t even think size matters.
Are you having side effects?
(Mine is dizzy, right side facial numbness, but I feel like my focus, memory and anxiety over the last 4 years have been way off, but he says it’s not due to the tumor)You’re the only one I’ve met with the same location. Wish it weren’t in that location. I know you feel the same.

rsfcowgirl | @rsfcowgirl | Mar 12, 2023

In reply to @cowboyup "Has anyone had Proton Therapy for a meningioma?" + (show)

I looked into Proton Therapy when I was considering treatment and I learned that that type of energy is not effective for the type of tumor meningioma is. That was about 8 months ago. But do your own research always.