Just diagnosed with Meningioma: What do I need to know?

It seems like you could benefit from checking the ABTA website( America Brain Tumor Association) They have educational resources and even a care line you can call. Its a pretty easy website and helped me very much when first diagnosed. Hope this helps. 🫂

Miracle child: My meningioma was found incidentally when I was being scanned for something else. My primary care physician said, "You have a meningioma." Basically, end of story. I, like you, didn't understand what it was, what impacts it would have. At the very least you should be seen by a neurologist. He/she should be able to give you a lot of information and may decide to refer you to a neurosurgeon, who is actually the expert on meningiomas and if they should be left alone, radiated, or removed. My advice is don't settle for what advice your primary care doctor suggests. I was steered in the wrong direction by mine.

My diagnosis came as a surprise from a scan done for other reasons. Even as an RN I had much to learn. I had consults at 2 medical centers with 4 doctors, 1 neurologist and 3 neurosurgeons. I had to educate myself about meningiomas in general and then take in the info from the specialists who each had some differing insights and recommendations about my specific tumor. I also read online reputable sources and joined this forum. From all that I found the place I want to be followed as a patient and I was able to choose the physicians I want to continue with. I was so anxious in the beginning but after my situation became better understood I felt so much better. I wish you the best and remember to take good care of yourself.

Six months ago, I was diagnosed with a grade 1 meningioma. A neurosurgeon from Sutter Health performed my surgery to remove it. The tumor was the size of a golf ball and calcified. Although I didn't have a chance to vet the neurosurgeon's expertise beforehand, he successfully removed the entire tumor, and I am now on the road to recovery. I am experiencing some minor tightness and occasional headaches, but overall feel confident in my progress.

During the surgery, a second small mass was discovered along the posterior falx, which is the sheet dividing the brain. This mass is deep, and if treatment becomes necessary in the future, it will likely involve radiosurgery. I have been referred to a surgeon at Stanford Health Care who has experience with a clinical trial relevant to my case, allowing me to effectively evaluate my options moving forward.

@mjlc25: I am glad to hear your craniotomy was a success. I also have an 8mm meningioma along the posterior falx that I am monitoring with yearly MRIs. I am assuming that it was your neurosurgeon who suggested , "it will likely involve radiosurgery." I take that to mean that you would be a candidate for either gamma knife or cyber knife. If and when it is recommended that I undergo radiosurgery, I'd rather veer in the direction of a tried and true procedure rather than be part of a clinical trial. Is there is something unique about your meningioma that leads the neurosurgeon to think the traditional radiosurgery isn't a good approach? Just wondering because I'm kind of in the same situation.

Thank you so much for your candid feedback and for sharing your personal experience, @mkoch.

I always take the time to delve into a doctor's complete biography to appreciate their capabilities and expertise fully. Additionally, I value reading patient reviews and comments, as they provide important insights into others' experiences. When a physician is actively involved in continuing education and research related to brain diseases, it gives me confidence that they are at the forefront of the latest advancements in medical technology.

I have an upcoming initial consultation with the surgeon at Stanford in 2 weeks, where I hope to gain a clear understanding of the type of radiosurgery that will be required for my condition. I look forward to sharing the outcome of the consultation with you soon!

@mjlc25
A very concise and optimistic report. Congratulations!

Dolly

@mkoch did they know you had another meningioma when they did your craniotomy and if so why wasn’t it removed at that time? Sounds like it’s now common if you have one others can grow back.

@as72: Yes, the other two were known to be there after the 2nd MRI. But they were small, 6mm. and 8mm., and they were not causing symptoms as the 2.7 centimeter one was that was near my optic nerve. I could have lost my eye sight in my left eye so it was imperative to deal with that one. To have operated on all 3 would have kept me under anesthesia too long. So the doctor suggested we monitor the 2 remaining small ones for awhile. So far they have been stable for 3 years. The neurosurgeon has recommended radiation for those if they start to grow. I recently found out, per someone else's post, that meningiomas can grow back. That was disappointing news. I thought that since the doctor was able to totally resect it I was done with it. Perhaps not, but to constantly worry about the one removed growing back, and the 2 small ones I have, is like paying interest on a debt not yet owed. So I visualize opening my top dresser drawer, putting my worry and apprehension inside, closing it and not opening that drawer again unless I need to. (Kind of like ya' don't open your sock drawer unless you need socks.) I don't need the anxiety in my life right now; I want to prioritize my time enjoying my grandkids, coffee dates with friends, and relaxing with my husband.

I just saw this as well but I think I remember reading it can come back if they can’t get all of it. I hope this is the case. Dr Aghi at UCSF said he thinks he can get all of it and wouldn’t need radiation.