Meningioma: Anyone else? I'm frightened

My neurologist and neuro oncologist tell me that my Mengioma is inoperable. Neurologist yesterday answered saying that the meningioma can not be removed from the trigeminal nerve. I am only 59 and after reading this a second opinion is absolutely needed.

Thanks for the correction, that's reassurng. I'm waiting on a call from my cancer doctor. Hoping ge can recomend someone.

Good call

I also found out I had one through an incidental CT scan from a fall I had. Had the MRI and it was found in the dura(lining of my brain) and the neurosurgeon recommended gamma knife radio surgery bc of its size and location and my age (69). I went through with it bc I was making myself sick thinking about it all the time. I waited for about a year before doing it to see if it would grow and it did. That was enough for me to hear. I went through the gamma knife RS and it was painless. I’ll see in December if it stopped growing or hopefully shrunk a little bit (takes up
to 5 years). I’m petrified and praying to God it works. God bless you on your journey. It is scary.

Hello,
67 isn’t too old for craniotomy surgery if you’re healthy otherwise. I’ve read about people in their 70’s and beyond having successful surgery. I had a 6.3 cm tennis ball removed from my right frontal lobe 6 months ago and just completed follow-up IMRT. I recently ran the first 10k in 20 years and am biking up 20% grade hills. I was 67 at the time of surgery. Age is just a number.

Your story is very encouraging! Meningioma Type II is actually a rare subtype - in between Meningioma Type I (benign) and Type III (aggressive). I have scouted the medical literature and found that there are no consensus how to treat it. Type II can behave both ways - like a benign or like an aggressive tumor depending on a lot of factors particularly tumor markers. Thus the WHO has been reclassifying this tumor type. I assume that since your diagnosis happened in 2007 the tumor tissue wasn’t analyzed for genetic mutations and the diagnosis was made due to mitotic activity. I have seen in the literature the adjuvant radiation approaches and the observation approach.
I am happy for you that you have chosen to abstain from radiation and that you had a good outcome.
I think one of the most difficult part of having a condition in a gray zone is to deal with the waiting time period for your next scan. You are waiting to learn how your tumor behaves - was it completely removed - is there any new growth? What do I do then?
It is a challenge not to let the thoughts about what’s going on with your head overtake your daily life and relationships. You can’t burden others who don’t have that problem but you might have the need to talk about your anxiety. I can imagine now what you have been going through. I am sorry that you didn’t have the support from your partner that you most badly needed at that time.

Most places ask if you want ear plugs or headphones. You tell them both. And any other foam insulation available. And some quiet music. All to hear a bit less from the machine.

Thanks!

God bless you on your journey as well.

Me too. No diagnosis yet. Going for MRI with contrast .