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Just diagnosed with Meningioma: What do I need to know?

Posted by miraclechild @miraclechild, Feb 1 2:50am

I was diagnosed with Meningioma and I don't understand it. I have a lot of the symptoms of Meningioma. What do I need to know??

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vernicek | @vernicek | Mar 1 5:53pm

I was diagnosed with a meningioma in February and am not sure if my symptoms are from the meningioma or TMJ. What are your symptoms?

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dailygift | @dailygift | Mar 2 8:41am

I was diagnosed with a meningioma in an emergency room from a scan that was done to look for a brain bleed after a car accident. My discharge instructions from the ER included making an appointment with a neurosurgeon. So I recommend doing this. You should be able to get all your questions answered after you have a neuro exam and thorough review of your health history including current symptoms. I also opted to meet with a second neurosurgeon to make a final decision about who to use as my doctor and reviewed info on the Internet from reliable sources. I hope this is helpful! Best of luck.

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Colleen Young, Connect Director | @colleenyoung | Mar 14 7:46pm

@miraclechild, I hope you have been receiving the helpful posts from many members. It can be a lot to absorb when you're told you have a brain tumor. It's scary.

A couple of things to know. 80-85% of meningiomas are NOT cancer. They usually grow very slowly and may not show any symptoms. Because they grow slowly and there may be no symptoms, the treatment is to monitor only.

Here's more information from Mayo Clinic
- Menigioma https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

How was your meningioma discovered? Do you have any symptoms or need treatment?

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as72 | @as72 | Mar 15 10:10am
In reply to @mjlc25 "Six months ago, I was diagnosed with a grade 1 meningioma. A neurosurgeon from Sutter Health..." + (show)
Profile picture for mjlc25 @mjlc25

Six months ago, I was diagnosed with a grade 1 meningioma. A neurosurgeon from Sutter Health performed my surgery to remove it. The tumor was the size of a golf ball and calcified. Although I didn't have a chance to vet the neurosurgeon's expertise beforehand, he successfully removed the entire tumor, and I am now on the road to recovery. I am experiencing some minor tightness and occasional headaches, but overall feel confident in my progress.

During the surgery, a second small mass was discovered along the posterior falx, which is the sheet dividing the brain. This mass is deep, and if treatment becomes necessary in the future, it will likely involve radiosurgery. I have been referred to a surgeon at Stanford Health Care who has experience with a clinical trial relevant to my case, allowing me to effectively evaluate my options moving forward.

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@mjlc25 what was the surgeons name? Wachorst? He refused to see me said he doesn’t do meningioma (2.7 cm left frontal lobe partially calcified)

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vernicek | @vernicek | 6 days ago
In reply to @dailygift "My diagnosis came as a surprise from a scan done for other reasons. Even as an..." + (show)
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My diagnosis came as a surprise from a scan done for other reasons. Even as an RN I had much to learn. I had consults at 2 medical centers with 4 doctors, 1 neurologist and 3 neurosurgeons. I had to educate myself about meningiomas in general and then take in the info from the specialists who each had some differing insights and recommendations about my specific tumor. I also read online reputable sources and joined this forum. From all that I found the place I want to be followed as a patient and I was able to choose the physicians I want to continue with. I was so anxious in the beginning but after my situation became better understood I felt so much better. I wish you the best and remember to take good care of yourself.

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@dailygift

Hello,
I was diagnosed with a skull based meningioma on the left side, and like you, have been consulting with neurosurgeons and a neuro-opthalmologist. What have you decided to do about your meningioma?

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vernicek | @vernicek | 6 days ago
In reply to @mjlc25 "Thank you so much for your candid feedback and for sharing your personal experience, @mkoch. I..." + (show)
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Thank you so much for your candid feedback and for sharing your personal experience, @mkoch.

I always take the time to delve into a doctor's complete biography to appreciate their capabilities and expertise fully. Additionally, I value reading patient reviews and comments, as they provide important insights into others' experiences. When a physician is actively involved in continuing education and research related to brain diseases, it gives me confidence that they are at the forefront of the latest advancements in medical technology.

I have an upcoming initial consultation with the surgeon at Stanford in 2 weeks, where I hope to gain a clear understanding of the type of radiosurgery that will be required for my condition. I look forward to sharing the outcome of the consultation with you soon!

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@mjlc25
I was diagnosed with skull based meningioma on the left side on Feb 7, 2026 and also have an appointment for a consultation at Stanford. Have you had your appointment? How did it go?

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dailygift | @dailygift | 5 days ago
In reply to @vernicek "@dailygift Hello, I was diagnosed with a skull based meningioma on the left side, and like..." + (show)
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@dailygift

Hello,
I was diagnosed with a skull based meningioma on the left side, and like you, have been consulting with neurosurgeons and a neuro-opthalmologist. What have you decided to do about your meningioma?

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@vernicek I had a repeat MRI 3 months after the first one that showed no change. With that result I felt confident in concluding that my best course of action is watchful waiting and repeating an MRI in 6 months. The 2 neurosurgeons that I meet were on board except one felt I should still have gamma knife BUT it would not be unreasonable to do watchful waiting. The important thing with watchful waiting is to have your repeat scan on time and continue to monitor for symptoms. Luckily at this time I don't have any. The reason one surgeon stated I should still have the procedure now is that if I have the procedure now (I have some edema ) my risk profile for having gamma knife is lowest now. If I need it in the future and there is more swelling I will be in a higher risk category for complications. My age is also a consideration, I am 73. If I need the procedure in 10 years I may wish I had taken care of it when I was younger. So there are unknowns in the equation. But I am content with my choice. How are you doing in this journey?

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vernicek | @vernicek | 5 days ago
In reply to @dailygift "@vernicek I had a repeat MRI 3 months after the first one that showed no change...." + (show)
Profile picture for dailygift @dailygift

@vernicek I had a repeat MRI 3 months after the first one that showed no change. With that result I felt confident in concluding that my best course of action is watchful waiting and repeating an MRI in 6 months. The 2 neurosurgeons that I meet were on board except one felt I should still have gamma knife BUT it would not be unreasonable to do watchful waiting. The important thing with watchful waiting is to have your repeat scan on time and continue to monitor for symptoms. Luckily at this time I don't have any. The reason one surgeon stated I should still have the procedure now is that if I have the procedure now (I have some edema ) my risk profile for having gamma knife is lowest now. If I need it in the future and there is more swelling I will be in a higher risk category for complications. My age is also a consideration, I am 73. If I need the procedure in 10 years I may wish I had taken care of it when I was younger. So there are unknowns in the equation. But I am content with my choice. How are you doing in this journey?

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@dailygift

Thank you for your quick response. The left-side meningioma is abutting my carotid artery and optic nerve. I had a four hour neuro-opthamologist appointment last week at the UC Davis Medical Center in Sacramento. Dr. Liu was concerned about future loss of vision and a possible stroke and recommended Endonasal surgery to remove the tumor.

Today, I have an appointment with Dr. Kirash Shahlaie, the neurosurgeon who specializes in meningiomas at UCD.

After Easter, I have an appointment with Dr. Gordon Li at Stanford. He has a reputation for digging deep to determine the risk to benefits of neuro surgeries.

I will have a wait period of six months, have a second MRI, then make a final decision.

I am healthy in all other ways at 74. This is definitely not what I expected!

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jimw9 | @jimw9 | 4 days ago
In reply to @dailygift "@vernicek I had a repeat MRI 3 months after the first one that showed no change...." + (show)
Profile picture for dailygift @dailygift

@vernicek I had a repeat MRI 3 months after the first one that showed no change. With that result I felt confident in concluding that my best course of action is watchful waiting and repeating an MRI in 6 months. The 2 neurosurgeons that I meet were on board except one felt I should still have gamma knife BUT it would not be unreasonable to do watchful waiting. The important thing with watchful waiting is to have your repeat scan on time and continue to monitor for symptoms. Luckily at this time I don't have any. The reason one surgeon stated I should still have the procedure now is that if I have the procedure now (I have some edema ) my risk profile for having gamma knife is lowest now. If I need it in the future and there is more swelling I will be in a higher risk category for complications. My age is also a consideration, I am 73. If I need the procedure in 10 years I may wish I had taken care of it when I was younger. So there are unknowns in the equation. But I am content with my choice. How are you doing in this journey?

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@dailygift Do not ignore any increase with your edema.

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