Meningioma: Anyone else? I'm frightened

bonjour oui moi aussi suite a un irm meningiome mais generalement benin mais le probleme juste rique parkinson ou eihzemer donc je connais 2 personnes operees tout c est bien passe et ils n ont aucun soucis courage a vous l inconnu fait toujours peur moi aussi

God Bless you. You have been through so much. May you continue to live without having to do more chemo and radiation. We can only address one problem at a time in fighting this battle. I hope and pray all the procedures you’ve been through help you live as best you can.

Hello edeval4,

After regular surgery, radiation and chemotherapy, I went with the gamma knife procedure. I had researched the procedure and was satisfied with the risks. I did not research proton therapy. After the gamma knife procedure, I have continued with the post-surgery chemotherapy and just finished month 5 of 1 a day for 5 days of chemotherapy. I will complete my 6 months of therapy in early July. I'm not sure what will be next after completing current therapy. I have some setbacks but still living. Hopefully you will continue with your process and pray to God for help.

You as well! I did research proton therapy as well. My NS told me gamma knife is more effective in pinpointing the tumor. From what I read, I told him proton therapy is supposed to pinpoint the precise location as well. He said if you believe the media hype!?!?!?! What is one suppose to think. It’s scary as hell but I don’t want it to continue growing and cause stroke, blindness, paralysis, etc… I have to leave it in God’s hands now. 🙏🏼

That is what I’m afraid of! The radiation causing cancer later. They want to do gamma knife, but Mayo said Proton therapy. When I looked into them I found literature stating there was a lower risk of it causing cancer, so why did they want me to do gamma knife? The only explanation I got was that it’s precise and effective. I don’t know. It’s a difficult thing to deal with. I wish you well!

When did your headaches and dizziness start after sterotactic radio surgery? Was it months later or right away??

They found my meningioma incidentally in Jan. 2024. I’ve been to two neurosurgeons and had three MRIs since diagnosed. Mine is benign and growing in lining of my brain. Hadn’t infiltrated my brain. It grew 1mm in one year and NS recommended gamma ray radiation. I was hesitant at first bc my husband had gamma ray for an AVM many years ago and years later developed a cancerous brain tumor from that radiation and died. The percentage of that happening is very low and I’m praying to dear God it doesn’t happen to me. I just had it done a couple of days ago and NS and radiologist felt very positive about it and the hope is that it doesn’t grow anymore and/or shrinks. Mine is relatively small and they felt it could be handled less intrusively than a craniotomy. I hope and pray this works and hope yours is small enough to be handled less intrusively also. It’s very scary bc it could affect us in many negative ways if it continues to grow. God Bless us all.

radmom: I don't know if I buy into the doctors trying to tell you there is no connection between your radiation protocol and your post-radiation dizziness and headaches. Before I had my meningioma removed, I told the radiation oncologist that I had constant burning in my left nostril. He said that wasn't a symptom associated with the meningioma on the left side of the sphenoid wing of my brain. Well, he was wrong because once it was removed, a year and a half ago, I haven't had the burning sensation since. It actually was a direct cause.

Hmmm...

After the radiation and they kept telling me there was no connection even though I never had dizziness or migraines previously (go figure)