Meningioma: Anyone else? I'm frightened

I had a meningioma that was surgically removed in 2002. In 20 plus years it regrew. Part of my tumor is located in a vein and can not be radiated or surgically removed. Yes, it is scary. The most important thing is to find a very well qualified Neurosurgeon who you have faith in to do the assessment. Some hospitals like Mayo have a team to review your case and give input so it is not one person's opinion, As a result of Mayo's team approach I am now being seen by a Neurologist who specializes in headaches and the flow of CSF. It took a bit to get the right treatment approach.

radmom: Did the migraines and vertigo start AFTER the stereotactic radiation or were you experiencing those two symptoms before the radiation?

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

Hmmm...

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.

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.

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

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!

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. 🙏🏼

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.