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Meningioma: Anyone else? I'm frightened
Brain Tumor | Last Active: 2 days ago | Replies (362)Comment receiving replies
I really do not like to talk about this because it brings back bad memories. I had meningioma a year and a half ago. My surgeon performed the craniotomy to remove a 2.9cm tumor. Although it’s benign, the tumor was pressing on my trigeminal nerves causing some severe pain in my jaw, so surgery was performed within months of my diagnosis. I was so scared for a little while but did not have much time to sit on it and think about it too much. Radiation was not an option due to the size of the tumor. Surgery was successful. I was in the operating room for about 10-12 hrs, ICU for 2 days and recovery for 2 days. Fast forward to today, I have some nerve damaged (presurgery) from tumor crushing on my trigeminal nerves causing some minor numbness and tingling on the left side of my face but it’s nothing compare to how it was pre surgery. I cannot talk about radiation as I have no experience nor knowledge of it. But if craniotomy is the option, I would advise for it. Ask your neurosurgeon/neurologist what brain tissues could potentially get injured/damaged from surgery. Craniotomy is a very scary idea but after going thru it, I think its an easy thing for a younger person to overcome.
If my tumor was not removed, my surgeon informed me that I probably would only have 2-3 years to live because the tumor was so close to my brain stem, on the left cerebral hemisphere and could exhibit mass effect on the pons. Another advice is to not wait longer to allow growth of the tumor which could affect or damage the surrounding brain tissues…..
I hope this helps…Good luck to you!!!
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Hi gdcf03,
I am a 10yr survivor-thriver of a spheno-orbital meningioma with cavernous sinus involvement and underwent a craniotomy and cranioplasty.
As the founder of a nonprofit that provides support to meningioma survivors-thrivers , their families and caregivers, I know all to well the long term effects of this brain disease with or without treatments.
Doctors (nerosurgeons, neurologists and very few researchers) know very little about meningioma brain rumors because it is not studied or researched in standard fashion like many other diseases that primarily affect women.
The term benign only mean non-cancerous cells are presented. It doesnot mean that tou are cured from this brain disease. There is no cure for menigiomas and they do have a recurrence rate even after treatment, some 5, 10, 20 yrs later. Once can't be cured from an illness when the cause of it has never been determined.
What neurosurgeons never share with meninioma survivors-thrivers are the long-term deficits that you will have from this disease and how they are never talked about them as part of your care plan. I have thousands of testimonies that when direct questions are asked like "what happens are my treatment"; "will I be able to", " will the meningioma return" etc?
The neurosurgeons, neurologists and meningioma brain tumor resesrchers that provide collaborative services to my nonprofit have never reported a meningioma death case. So I am profoundly curious as to where the doctor that proclaimed that if you opted not to have a surgical procedure to treat your meningioma, that you would be dead in 2-3 yrs. There is absolutely no known reseach that have correlated, associated or supported meningiomas with imminent death. NONE!!!
More advocacy, awareness and support is needed on and abour meningioma brain tumors.
Go well...