Meningioma: Anyone else? I'm frightened

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

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.

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. )

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 had one partially wrapped around my left optic nerve, pressing into my pituitary gland moving it to the side, and up against my carotid arteries. The first neurosurgeon said open craniotomy and very elusive when I asked how many he’s done in this area. The next two both said go through your nose and sinus and both had done well over 100 in that year. It’s all they do. I went with removal through my nose.

Hi, I have a very similar story except it’s my left optic nerve. What did you decide as your treatment plan. I am really not a fan of the craniotomy which seems to be the choice provided by the neurosurgeon

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.

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.

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.

Thank you for your reply.. I'm still trying to get some solutions even after they found one in the cavernous sinus but they reassured me it has not changed since 2022 yet in the recent months my double vision and loss of vision has gotten worse. They have no action plan in place other than to watch and wait. I feel like I'm fighting a losing battle and fear of losing my eye sight.