Meningioma: Anyone else? I'm frightened

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!!!

I have heard that radiation treatments can sometimes scar the brain so that later surgery is impossible. On the other hand, surgery doesn’t preclude later radiation treatments. So if the surgery is likely to be successful, they go to that first.

Best wishes to you. (I had meningioma surgery at age 74, and 8 years later my latest scan was clean. )

3 years ago my meningioma was discovered by accident. I had a dvt in my left leg - then checked lungs had pulmonary emboli in both and then checked my head. I had a 2.8cm that as far as I know was not causing me problems. Went on eliquis for the PE's and took the wait and see approach for the meningioma. had MRI's every 6 months and now it is 4.3cm in my cerebellum. I am 68 years old. I play doubles tennis 4x a week. My dad had a similar meningioma 30 years ago but with balance and vision symptoms. The surgery was successful but the swelling in his brain was not treated timely. So my main concern going forward is for a team approach whereby something like swelling or more PE's are treated right away.I've gotten 3 opinions and all agree that surgery (craniotomy) is next. They might not be able to get it all so radiation would be in my future to make sure what was left does not grow. The surgery is now scheduled for Feb. 18.

Sorry it took a while to respond back. Recovery was about 2 months.

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...

@ncadler, did you receive any treatment for either meningioma or are you on active surveillance?

I almost died from a meningioma which bled. (This admittedly isn’t that common) The neurosurgeon who did the emergency surgery at 3:30 am told my son who authorized the surgery (I was unconscious) that even with the surgery I would most likely die in the neuro-ICU and without it I had absolutely no chance at all. My son decided to go for it, 8 years ago.

It’s scary for sure but I would check with your Dr and tell them your concerns. They can give you some meds to control the seizures while you wait to get it removed if that’s the path. I say live it to your hearts fullest and then get the thing removed. For me the first couple weeks after surgery was strange with what I can only describe as just noise in your head. Feeling of being off a bit and dingy. All said it wasn’t so bad. Small steps back while going through recovery as mine was at the end of 2022 and I still have some slight issues at times. The most annoying was that I lost my sense of taste and the only things that tasted normal was anything with marinara sauce and chocolate. I could tell if something was sweet but it could have been anything sweet and I could say what it was. I had a kidney stone removed several years ago and I would say that was more painful but didn’t take as long to recover from.

@marigold99, I hope that the proton beam radiation was successful. When is your son's follow-up appointment to learn the results?

Next Tuesday. Thank you for your kind words.