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

Discussion
Comment receiving replies
Profile picture for psecc @psecc

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.

Jump to this post


Replies to "kbsmith, I am similar with grade 3 meningioma. 100% resected, (removed through surgery) August 2024, and..."

Hi,
I am 63 and have a grade 1 meningioma near but not touching my optic nerve. I opted for radiation vs. surgery since i have no symptoms and it was starting to grow. I wanted to nip it with SRS before it grew into symptoms. I have long hair and am concerned about hair loss. I had my last treatment today. I had 5 sessions at Cedars. My temple is the location. Did you los a lot of hair? Hope the radiation worked! I had fractional 5 sessions and after they all rang a bell at the clinic. My friends took me every day and it was close to home. Praying it stays stage 1. Blessings to you all and your journey. Thank you for sharing.

KBsmith05,
my tumor they think is a grade 2 and located on the right side towards the back of my head. My doctor is worried about removing it and hitting a vein. They are surprised my balance and gait are not off. My symptoms are more focal seizures and tingling in the face with a bad headache. I am wondering if your docs were worried about veins in the same kind of area. Any advice or information is greatly appreciated.