Meningioma: Anyone else? I'm frightened

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.

My son lost vision in his left eye (at age 12). At age 27, he experienced worsening symptoms that finally led to the diagnosis of 3 meningiomas that had been growing for years. He had 30 proton beam radiation sessions, and now we wait to see if the tumors are dead. Due to the location of the tumors, they are inoperable. Unfortunately, at age 12, when he first had the MRIs, they missed the tumors. I regret that we didn't push more to find a diagnosis. He's had many health issues over the years, and now we are learning why. It's been difficult.

Hi I had a MRI 4 days ago I was called 3 hours after to tell me I have a tumor on the lining of my brain thats about 2 inches big which has some swelling and wanted me to go back in a day later to have another but to have the dye put in to highlight the bloody, so I did that now im just waiting. I'd love to know how long full recovery is as i have a holiday booked and paid for for the 13th (just over 2 weeks) for my birthday and dont want to miss it so does the recovery take longer. I'm hoping they can just control the swelling and remove it when I get back but I am so scared I'm scared to do anything right now in case I make it worse I cant even have a shower unless I have someone come and just sit and wait while I have it

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...

cant speak for anyone else, but....i had one mengioma diagnosed13 yrs ago in california @ stanford med and another here in st paul last year. i was told they are very slow growing.

that does not take away from the fear and angst of wait and see, i know.

~~~best!

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!!!

Hi sorry how long was you recovery

Hi @mkoch and @gammaqueen, I hope you can help me with some insights. I had an appt for GK last week. The neuro oncologist said that it is technically doable since my meningioma is 2.5cm but that he recommended me normal surgery due to my age and health, I'm 46y and healthy. If I don't want to have the normal surgery he would do the GK but in 5 sessions, a very conservative approach. I understand he is trying to minimize edema since the tumor is almost at their maximum and a higher dose of radiation would be needed. Why is this? Isn't GK recommended to younger people? If so, why? Is it because of the radiation side effects? I was confused that his first recommendation was normal surgery. Thanks.