Meningioma: Anyone else? I'm frightened

ninha: Wow, if the neuro oncologist, whose job it is to oversee radiation of both benign and malignant brain tumors, recommends that you go with surgery, I'd really listen to that. I just read a book published in 2024, written by a neurosurgeon, who states that 2.5 cm. is about as big as you want to go to have the radiation. ( My neurologist said 3 cm. but he's not the expert in the field of neurosurgery.) I'd have to go back and reread the chapter as to why radiation is less effective once the meningioma grows past a certain threshold. I was also told, by a neuro oncologist , that he would schedule the radiation 5 days in a row, Mon.-Fri., and I'd be done. The reason I did not choose stereotactic radiation was as follows per what I was told by the neuro-oncologist when I asked for post radiation symptoms/problems:

**Whatever symptoms you are already experiencing the radiation won't negate those. The purpose of the radiation is to stop the growth/possibly shrink the meningioma but I was told once a particular symptom presented itself that would not go away because of the radiation. But, removing the meningioma would resolve my symptoms.

**The main reason I did not want to have radiation is b/c the neuro doc told me there was a
5 - 10% chance that the radiation would cause necrosis-meaning some brain tissue dies and becomes necrotic. Then you would either have to have surgery to try and remove the dead tissue or you would also have to go on steroids long term. I saw what steroids did to my father when he was on them long term for lung cancer and I didn't want to go that direction, take that chance of being in the 5-10% range of developing necrosis. (In all fairness, another neurosurgeon quoted the necrotic rate at 2-3%)

**As you know, I did have a full on craniotomy and had my entire 2.7 centimeter removed. I was only on steroids for a month b/c any brain surgery will cause swelling and that is the post surgical standard. I have posted before the craniotomy was NOT the nightmare I had envisioned. I am so glad it is OUT of there, and not still sitting in my brain shriveled up, not growing, but still there which would be the case had I had the radiation. I was 71 when I had the craniotomy and my benign tumor, a.k.a. meningioma, was in my cavernous sinus, a difficult location that both my neurologist and the neuro radiologist said they couldn't imagine a neurosurgeon attempting to remove it. The neuro oncologist you consulted is basing his recommendation on your age and the location of your meningioma. Count yourself lucky that he thinks it's in an accessible location. Count yourself lucky that you're young and healthy and will probably sail through brain surgery, as I did. (Well, I did have double vision for 3 months but that was only b/c the growth was 1/16th of an inch from my optic nerve and the nerve was inflammed from the surgery, not cut, therefore it healed on its own in 3 months.) I would keep in mind that someone posted a few weeks back that 20+ years ago they had radiation for a meningioma and now they have been diagnosed with brain cancer. That person was wondering if there was a correlation between the radiation they received years ago and their current brain cancer diagnosis. That is not far fetched. I have read multiple times about having radiation for a given medical problem and the risk of cancer because of it in the future. Of course, I am sure the risk is dose dependent to a certain extent. I will close by repeating what I stated at the beginning, that is if the neuro doc whose job it is to oversee radiation of meningiomas but suggests surgery would be the best option for you, thereby handing your care over to a neurosurgeon, I would trust his judgement and at the very least consult with a neurosurgeon. I'm sorry you're having to go through this decision making process. I found it stressful.

I had one in April 2022. I understand every person’s results are different. Benign meningioma was successfully removed. I woke up with drop foot and possibly neuropathy. My sister, an RN, suggested possibly that restraints on arms/legs surgery were not routinely loosened and retightened. For blood flow. I guess I would make that a point to doctor. Be your best advocate.

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!!!