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

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.

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!!

I had a craniotomy for my Meningioma. Took a sample and decided to do radiation rather than removing it. My surgeon said they have problems with removing it and often radiation is the best route. The radiation was not difficult and was about 30 minutes each treatment. I had to do it for 6 weeks. I was not crazy about the headgear I had to wear, as that was slightly unpleasant. I get a new MRI every 2 years and so far it hasn’t grown again, although I was warned it probably would. Best of luck.

I’m not exactly sure what type of radiation you’re talking about, but, I had the Gamma Knife procedure done last year. I walked in at 6 am and walked out at 3pm. No pain or recovery time was needed. My surgeon (UofP) told me that the Gamma Knife would keep it from growing, and eventually over a period of time will shrink. Good luck.

So did you just have one session-one and done?

Yes. Hopefully one and done. Are you having the Gamma Knife Procedure done?

Currently I'm on active surveillance. I'm still reading posts about other's experience in case my next MRI signals my doctor to suggest radiation. I already had one craniotomy and am told if the other 2 grow that will not be an option. I was offered radiation on the meningioma removed a year and a half ago. I got opinions from 2 different doctors-one suggested 5 days a week for 5 weeks and the other doctor said one and done. Though Mon. thru Fri for 5 weeks would be most inconvenient given that I would have to drive an hour each way, the thought of one single zap seems really scary to me. Hopefully, I won't have to make that decision.

Hello. I'm so sorry you and your husband are having this difficult time. I had a petroclival meningioma removed by surgeons at Duke a few years ago which is growing back into my cavernous sinus. I'm writing just to send good wishes to your husband and to let you know you are not alone! I'm intrigued that you found a JH surgeon willing to operate, but the Duke folks won't touch it. I know Dr. Friedman at Duke does have very good judgment. As you said, we ultimately have to trust it is in God's hands. Take care!

aabkitty1: At the time your petroclival meningioma was removed a few years back did the doctor indicate that they were able to remove it all? I'm wondering if doctors are able to remove a tumor in its entirety, would the probability of a regrowth be less likely. In my own case, that is what I am hoping. The surgeon said they were able to remove all of it but then I read these posts about regrowths and get nervous.

My understanding is it is a case by case basis. In my situation, my surgeon was unable to offer a guarantee. He explained that there were small "roots" of the tumor which were too risky to resect due to their proximity to vital structures, nerves, etc. He has me returning for tumor surveillance yearly accordingly. Best to you!