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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.
Replies to "I am recently diagnosed w a meningioma that is inoperable +untreatable w standard options. Been evaluated..."
Hello Mayo Clinic. It's been 3 yrs since I posted this original post. Wow.
It's been anything but smooth sailing in life. But all of the bumps in the road were unrelated to the tumor.
I had the first occasion to see the tumor on an MRI since posting the original post. The tumor was not benign. The reason the Physicians did not dx malignancy+ tell me is because a biopsy could not be perfomed because of location. They do not make a definitive determination w/o a pathology report. And they were concerned I may have reacted w an extreme decision at that time.
Tumor is frontal with invasion into Superior Sagittal Sinus and growing between the hemispheres. And not benign. That's the reason no intervention was possible.
Since the dx and posts here, I was assaulted twice with this tumor on and in my brain. The perpetrator was a person who knew of this tumor. (Not a spouse or relative. Was someone antisemitic.) I was attacked forcefully on my head, intentionally. I had 2 concussion/TBI's. So, it's been a fight to survive+ recover from devastating losses, trauma, injuries +displacement. Every symptom of my Neuro decline is from the assaults and the Hurricaine Helene survival trauma I went through. Nothing is from the tumor.
Here's the good news. The scans show no tumor growth. None.
After Helene, Sept 27, 2024, I was living in my car for weeks, then living in an emengency converted building w/out central heat over a harsh winter w temps as low as 1°F at times, I was also robbed of valuables. But I made it through. My situation is somewhat better now. I'm hugely thankful for this!
I have to work bc of financial losses so I was hired at a low level job and I'm doing the best that I can. I did not disclose the tumor. Personal decision.
All is well with the tumor and with my soul. I'm trying to recover from the TBI's. It's slow but I see progress. Progress is mixed w intermittent regression but I'm accepting my deficiencies. I experience some sorrow, but I don't dwell on it. I focus on building resilience.
I'm amazed to see these many years have passed since learning of the brain tumor. I haven't thought of the tumor often. When I was told there was nothing that could be done, + again when I saw the tumor on the MRI was not benign and then my Dr confirmed that, I decided to absorb that fact and just continue living life as life comes. I trust in God. It's been very hard, but I've gotten through it all. Life goes on until it doesn't. At this point, life is still going on. And so am I.
Please, dear ones who are walking the brain tumor path, set your faith level to "high" and reject negative thoughts and fears as much as possible. Every person has a different journey. We can't see the actual future. It may very well not be the one you envision, fear, or is the one your doctor told you to expect. Only God knows your future. He can take you through whatever comes. You get strength when you need it. You get help when you're desperate. You can even get a miracle.
Keep hope in your heart. Keep living the best life you can. Seek out beauty wherever it's to be found. Try to arrive at peace in yourself whatever your circumstances. Overcome any evil that comes against you with forgiveness. Overcome fear with faith that your own best outcome is possible, given by the Grace of God.
Happy Passover to Jewish people. Happy Easter to Christians. Happy "Both" to Messianic Believers. Happy Spring to everyone of a different or no faith.
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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.