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

Posted by pabw @pabw, Mar 7 12:50pm

My grade 2 meningioma, "Bengio") was surgically removed April of 2023. At my recent MRI, it showed that it is growing back. Since it isn't too big yet, they want to do radiation to stop it's growth. Anyone else experience this? If so, is there any advice or tips you can give me? I will have travel 2 1/2 hours for treatment. Thanks in advance!

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bad1 | @bad1 | 1 day ago
In reply to @psecc "kbsmith, I am similar with grade 3 meningioma. 100% resected, (removed through surgery) August 2024, and..." + (show)
@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.

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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.

REPLY
pabw | @pabw | 1 day ago

I had a craniotomy April 3, 2023. The tumor started growing back less than 2 years out. It now got to the point of needing treatment. Mine is a strange atypical one in a not so good spot - my left sinus cavity. It is fighting against the radion I started almost 3 weeks ago, so last week I started on Dexamethasone. The tumor is being naughty and causing swelling issues in my left eye area and cheek. Hopefully that helps decrease the inflamation, but my body doesnt like it - sleeping issues, stomach issues and heightened emotions. Met with the doctor Monday and got answers I really didn't want, but at least I know more going forward. He thinks I will start losing hair soon. It could come back differently or not at all, mainly on left side. My regrowth is faster than what they normally see, but not the worst. There is concern for my eyes, hearing, and facial drooping, due to the nerves it is so close to. I was born blind in my left eye, so that could also be affecting things. Feeling more tired after each treatment. I have someone drive me 1 1/2 hours each way Monday -Friday. If it comes back, we would have to discuss more involved treatment plans, but not sure surgery will be a good option. Will do MRIs every 3 months for a year or more. Pray and talk to God throughout the day. That is mainly what gets me through each day, along with the prayers from everyone else. I have great, supportive family & friends and I am very happy with my medical team. Sorry for the long post, hope it helps. God be with you and be strong!!

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