Meningioma: Anyone else? I'm frightened

Go asap.

Thank you

edeva14: Sometimes when all factors are considered gamma knife is the best option. I think you'll be pleasantly surprised, come December, to see that everything is stable. Hugs to you.

My 2.7 centimeter meningioma was either sitting on my trigeminal nerve, or nearly so. (Another reason not to let doctors who are not neurosurgeons poo-poo your concerns about these meningiomas that "are almost always benign; we'll just monitor." Had mine been dealt with a year and a half earlier when I brought it to my P.C.P.'s attention (after it was found incidentally in the ER) maybe it would not have grown so close to my trigeminal nerve, or my optic nerve. The neuro doc at UCSF who saw me shortly before I was wheeled away into the operating suite specifically make a point to tell me that they were going to try very hard to scoop out the entire meningioma but that they would not in any way compromise my trigeminal nerve in the process; they would just go for partial resection if that were the case. So maybe your doctors are thinking the possible is impossible. In my situation, it was the same as yours, that being that both the neurologist and neuro oncologist told me mine was inoperable. I wouldn't settle for Joe-the-Blow neurosurgeon either to get your 3rd opinion. You are only 59, deserve the best care and outcome. Try to get into a university affiliated school where they keep up with the latest research and interventions, such as Mayo Clinic. There is no Mayo Clinic in Calif. I recommend UCSF for those that live here , or have access to a local airport with an easy non-stop flight from your city to San Francisco.

I have a Meningioma tumor. My neurosurgeon recommended doing surgery to get a sample to see if it was benign or cancerous. Mine was benign. I opted at his recommendation to have radiation vs having it removed. Often when removing them you can end up with paralysis on one side. When he did the craniotomy he thought about taking it out as it was right there, but left it. I did 6 weeks of radiation, 5 days per week, and that was over 8 years ago. It shrunk the tumor and it has stayed that way all this time. I did have a few side effects from the craniotomy for awhile such as forgetting how to do things, but that all came back to normal in a few months. I have an MRI every 2 years to check the tumor. I would have lost vision if it started to grow again, but so far all is good. Listen to your neurosurgeon and you can get a second opinion if you feel uncomfortable. Do some research on your own. Best of luck and I hope your experience is as good as mine was.

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

God bless you on your journey as well.

Thanks!

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.

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.