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

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.

You are truly a brain tumor warrior! I am 65, was 63 when my brain tumor was found, basically by accident. It took me a lot longer to recover. I am afraid I will lose my hair, now that I finally grew it back. I am afraid of the other side effects, but am so thankful to still be alive! I appreciate this group so much! Blessings to you!

My husbands is a grade 3 as well. He had surgery in 2022 followed by 6 weeks of radiation. They originally graded his at a 2 but later did more molecular testing and put it at a 3. He had cyber knife a year and half after surgery when it started to regrow. He’s been on Atvastin for last year and has tolerated that very well and had good quality of life. It’s only been in the last few months that he’s having significant visual issues from either regrowth or possibly effects from previous radiation. We just met with the radiation oncologist and they hope to do more localized radiation if testing shows that it is definitely regrowth. He’s going to have a specialized PET scan that will show what’s scaring vs tumor. We are trying to keep the faith that a new treatment will be discovered from one of the clinical trials Please keep us updated on how you are doing. It’s reassuring to find someone else on this site that has a grade 3 as most are grade 1 and 2

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.

I am very afraid as well. I am trying to stay busy so I don't think about it. When my brain tumor was found, everything was a rush to take care of it. I don't remember much of anything that happened at that time and the following week. I pray daily to St. Lucy, patron saint for eyes and St. Francis de Sales, patron saint of hearing. I have put everything in God's hands and remind myself He will not give me more than I can handle. God is with you! He will see you through it all. Things may not turn out how I hope, but I surrender to His Will, not mine. Blessings on you!

My son (28 years old) has three inoperable meningioma tumors. He completed proton beam therapy at Mayo a year and a half ago. Besides fatigue and a small amount of hair loss, he did very well! He even drove himself to all thirty treatments, 90 minutes each way! At his most recent MRI one month ago, he had no changes in the size of the tumors. His radiation oncologist says this is still a win because the tumors are not growing.
Best of luck with your treatments.

How wonderful! God's continued blessings!

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.

The Gamma Knife procedure was one of the options, but I think because of the placement of my tumor, they felt the conventional radiation would be better; less radiation at a time and hopefully no side effects or very little. I am not sure why radiation wasn't done to begin with - maybe because my tumor was a Grade 2 and not Grade 3. I am so happy it went well for you! They made a mask for me to wear each time and that gets connect to a head form they made to fit the back of my head and then the face mask gets attached to that. The goal for mine is to stop the growth. Shrinking of the tumor most likely won't happen. The doctor doing my treatment plan seems very knowledgeable, so I am comfortable with him. Best wishes for no future growth!

I had heard about the mask, but, that wasn’t an option. (I don’t know why). It’s amazing to think that you can walk into the hospital, and 6+ hours you walk out. 😉