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Meningioma: Anyone else? I'm frightened

Brain Tumor | Last Active: 1 hour ago | Replies (202)

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@drjohevans

I am a 10-year survivor-thriver of a R spheno-orbital meningioma with cavernous sinus involvement. I am in agreement with many points expressed by @lucy2lucy regarding how this unknown-caused and incurable brain disease manifests itself from one individual to another. As a founder of a non-profit that provides services to meningioma brain tumor survivor-thrivers and their caregivers, I offer these guided suggestions:
1. Become knowledgeable about the meningioma tumor type, grade, and location.
2. Always be accompanied by someone who can take notes during the discussion with healthcare providers. Someone needs to be attentive to the information being shared other than you.
3. Make a list and ask all your questions. No question is stupid.
4. Most doctors know very little about this brain disease (although they profess to) because there is very little empirical research that has been or is being conducted on these types of brain tumors.
5. Obtain more than one medical opinion about the treatment options available to you for your specific meningioma tumor. Every treatment option available IS NOT appropriate for all types of meningiomas.
6. If the doctor fails to be responsive to your inquiries including questions about his/her background in treating YOUR type of meningioma, MOVE ON and seek another opinion.
7. As @lucy2lucy states, the word 'benign' is used by doctors regarding meningioma brain tumors. The term is misleading in that it is used to indicate that meningiomas are non-cancerous. While meningioma tumor cells may not have cancerous properties, these tumors are debilitating to the vast majority of us who survive and thrive with them.
Lastly, fear is a natural response to hearing that you have a meningioma. They are almost always found/diagnosed unexpectedly and most time with little to no prior symptoms.

I do so hope these suggestions are of some assistance to you.

Go Well,

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Replies to "I am a 10-year survivor-thriver of a R spheno-orbital meningioma with cavernous sinus involvement. I am..."

I have the same as you only on the left side. Diagnosed n 2006, surgery 2017, hardwear removal 2020 (I was told they removed all of it)
2023, surgery to biopsy the bone flap, 2024, found out they didn’t remove all of the hardware. I have an indolent bone infection from my craniotomy in 2017. Waiting for the next part of my long journey.