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Meningioma on brain

Brain Tumor | Last Active: 1 day ago | Replies (11)

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@rsfcowgirl

I am recently diagnosed w a meningioma that is inoperable +untreatable w standard options. Been evaluated by two renown top 10 Specialist+ received the same conclusion at both evals. The obstacle is the tumor location +extension into critical structure. I'm symptomatic but it's not clear where individual ones are originating from bc I have severe post COVID syndrome following 2nd COVID infection. I had cerebral edema which was purely tumor originated +treated. I was in the medical profession which gave me an on the job preparation for the reality that no one knows when or if a disease, accident or life event will enter their lives. I have acceptance bc I understood that. I appreciate that I never had any organ disease or condition or chronic illness in my life and we can expect to get 'something' eventually. This tumor is what I developed after many years of very good health. My brain was investigated after COVID II bc of the severity of symptoms. It was ordered to rule out a COVID related blood clot. MRI revealed this tumor instead. I read about experimental intracranial growth inhibitors and biologicals +will be looking into those innovations. I have an interest in learning if I'm a candidate for the Proton Beam. Will pursue inquiry also. I'm accepting of myself with deficits as they emerge. Yet Im concurrently hoping some of these will be reversed when treatments for Long COVID are discovered. These are all the medical specifics I wish to share about the brain tumor. I decided to connect with others for community connections. I don't lose sight of positives beyond the existence of this tumor or obsess on the tumor itself. It's a part of my life that I have to deal with but it's not all of life. This is my way of living bc I have a very deep faith. Thank you for reading/listening.

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Replies to "I am recently diagnosed w a meningioma that is inoperable +untreatable w standard options. Been evaluated..."

My doctor is trying to get the proton radiation therapy approved through my insurance company. But I must have another MRI and a PET scan prior to. I am hoping we will be able to use this type of therapy as he said it is more targeted and less harmful to surrounding brain tissue. Has anyone had this type of radiation and if so what were your side effects? I already have some memory issues and just feel awkward due to tumor removal surgery. I am 75. I want to move forward and feel and ack normal. But this may be my new normal
I thought my faith was strong having a brain tumor has tested my faith. I sure don’t want to fail the test.