Meningioma: Getting ready for radiation, any tips or advice?

Hello. I had the Gamma Knife Radiation done last March. I had a 6mm Meningioma. I went in at 6:30 and walked out at 3:30pm. It was an amazing experience. My Dr. watched it until it hit a certain size. He referred to it as the size of a strawberry (hence it was known as the Strawberry). The only part that I didn’t like, was, that they had to attach my head to a halo contraption. They didn’t do it, until I was anesthetized, but, had to unscrew it from my head post treatment, it wasn’t painful, but, just the thought of 4 screws in your head is hard to imagine. I was told that the Gamma Knife would either keep it from growing or it will slowly shrink in size. I know it sounds scary, but, it wasn’t. Make sure you have an amazing surgeon and facility where it is performed. I had mine done at The Univ. of Pa. Do you know why, the radiation wasn’t done in the first place? Just curious. Good luck.

I had Gamma knife procedure a year ago but no anesthesia for the mask. They put needles in my skull where the screws go for local deadening and that was the only pain involved. Fortunately it was very short time. The rest went fine.

My appointment went a little different than I was hoping. The tumor is growing in a very sensitive area. There are a few radiation options, but the radiation oncologist would prefer I have surgery again. He is consulting with other doctors, so I am hoping to know more tomorrow or the first of next week. Never know what life will bring us. Working hard tontrust God and know He will be with me through whatever comes.

kbsmith, I am similar with grade 3 meningioma. 100% resected, (removed through surgery) August 2024, and 6 weeks of radiation, 2 gy daily and 60gy in total, finished in November 2024. I have had one MRI so far in my lifelong monitoring. The oncologist was shocked how well the report read.
I found my tumor because of things I was noticing on hikes; my left arm wasn't swinging naturally as I walked and my left foot kept dragging. Also, my balance was not so good. My husband said it sounded like a stroke, so I went to the ER where they did a CT and then an MRI. They thought they found a benign meningioma. Immediately I had brain surgery; within hours. . I am an active, healthy, outdoors-y Californian, but recovery from surgery in the immediate was tough. I didn't have use of my left arm or leg and I also had a left-side attention deficit, I had a tough time registering things on the left and I would bump into things on that side. I was admitted to an acute rehab for 8 days as the swelling in my brain went down. I recovered a lot of my deficit areas quickly and was released early. I am 61 and being healthy and active beforehand made a lot of difference. Today, 7 months after surgery, most people have no idea I had brain surgery and radiation. I still notice things like balance issues - my gait is a little off - my left hand is not as coordinated as it used to be. But as I sit here typing I already see significant improvement. I am convinced these are all things that with time will get better; my brain was injured from the tumor and has to be retrained.

Radiation was brutal. The sessions themselves were fine, but I lost my hair on the entry sight permenantly. I am a woman and that is a pretty big Quality of Life issue for me.

I have an amazing group of people that have support me and that is everything. My hope is in the Lord. He is good.

Thank you for your post. I am really concerned as mine is a grade 3. Meeting with the radiologist oncologist tomorrow. Worried that radiation is the next step and don’t know what to expect but I am fearful as I understand that radiation can harm healthy cells as well. I want to have faith but am struggling.

Went to see the radiologist oncologist yesterday and the plan is to try to do proton radiation to kill any cancer cells. 6 1/2 weeks of 5 days a week. Possible side effects of weight loss headaches , fatigue and maybe other symptoms like pre surgery tumor symptoms like memory loss and confusion. hair loss on that on radiation site. Of course I am dreading it but certainly want to kill cancer cells if possible. Any advise about things I can do to minimize side effects?

I opted for proton therapy after an initial crainiotomy on another meningioma had infected hardware that had to be removed. Am still dealing with that over a year later, so opted for the PT treatment vs another crainiotomy. . Had absolutely no issues with PT treatments. A few days at the end I felt a little fatigued. A little area of hair in front of my head now has a nice curl to it. I like it. The treatment is only a few minutes a day over the 5-6 week period. I filled my days with art and music and friends in between. I trust you will have a positive experience.