Meningioma: Anyone else? I'm frightened
I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.
Interested in more discussions like this? Go to the Brain Tumor Support Group.
What about Cleveland Clinic?
Some place to consider, but, its a 3 hour drive for me.
I think your PCP recognizes it is not his area of expertise and I respect him for not getting involved, although he should have owned up to not being schooled enough in the management of meningiomas rather than just say, "it's your decision." My meningioma was found when I was scanned for something else. My PCP said not to worry. We find meningiomas in older people all the time when we scan for other things like strokes, headaches. End of story. I went back a year later and made the decision to tell him I wanted a referral to a neurologist to further discuss the ramifications of the growth in my brain. First of all, I think whenever we're talking about our brain, and possible surgery, we should always get a 2nd opinion, if not a 3rd. Secondly, from what you write, it seems that the neurologist gave you very little information. You qualify your meningioma as "small." Didn't he tell you how many millimeters/centimeters? Did he tell you where it is located? Is the meningioma located near any critical structures or nerves? Is the area where it is located an easier area to operate? The answer to these questions is information you need to know to make an informed decision. I've written about my experience on this forum more than a few times as new people are diagnosed with a meningioma and find their way to this website and I remember the fear and anxiety I had. So I won't go into detail about my experience with being diagnosed a year ago with a 3 centimeter meningioma 1/16th of an inch from my optic nerve. I will offer that my neurosurgeon at UCSF specializes in meningioma surgery and also runs the radiation clinic at UCSF. He told me surgery is the best option if it can be performed safely. (As a side note, the location of my meningioma was not in an easily accessible area. Two other neuro doctors said it was not in a location that was operable and they said to have radiation.) I saw neuro-oncologist (who specializes in radiation for cancer patients whose tumors are not amenable to surgery) and I didn't like the possible side effects he listed from radiation. Based on my own experience, if you're healthy and the meningioma is in a relatively easy location to access, I would at least keep an open mind and consider a craniotomy. I will qualify that by saying, but only if you go to a hospital with top-notch neurosurgeons. I spent 2 nights in the hospital and was up and walking around the house as usual as soon as I got home. (Though I will admit one of my cranial nerves was traumatized by the surgery and for 3 months I had double vision.) The key to all of this, making an informed decision, is dependent on find a neurosurgeon who answers questions you maybe even didn't know you had yet, and who you trust.
marcellaw: I will also add that I also have two other meningiomas, 6mm & 8mm. My neurosurgeon said they are small and I am on a watch-and-wait protocol. They are not pressing on any critical stuctures (like my optic nerve). I was told by the neuro-oncologist that they typically grow about 1 mm a year. But those two have not grown at all this past year based on my follow up MRIs.
Thank you for your detailed reply! I will look into a second opinion.
Minnesota Mayo
I am not familiar with anyone well versed in that area. I had to travel to Rochester Mayo and UPMC Pittsburgh for experts. I went somewhere close and was not at all pleased. The neurosurgeon was not nearly on the same page as the other two. UPMC and Mayo were the same opinions and treatment. Both did over 100 of these per year, in the exact location of the brain. The skull base. Make sure you find a surgeon that does at least 100 per year if that’s your location. There’s a good research paper that was done that shows the complication rates go way down if they do. Good luck!
Thank you!
I was diagnosed with a 6cm meningioma of the cavernous sinus in April, 2024. It is surrounding my pituitary gland and close to the optic nerve. I am being followed at Mass General/Brigham hospital in Boston. There is no possibility of removing the entire tumor. Some can be removed to protect my optic nerve and vision. This was my second opinion. It is also noted that I have a related 6mm aneurism in the area. I am 75 yrs old. Due to its location, close to carotid artery and many nerves involved in the tumor, my doctor suggests I review testing in May to determine if there is growth. Since my symptoms are only blurry vision and mild infrequent headaches, it is felt that the risk for stroke, vision and nerve loss, outweigh the benefits at this time. Worsening symptoms may determine surgery. Both the tumor and aneurysm will be reevaluated in May, 2025. While I am moved to get as much of the tumor removed as possible, I completely trust my doctor and one on the best hospitals in the country. If your tumor is in this area, I suggest a neuro-opthamology consult to assess vision loss and an MRA which is an MRI that shows the arteries. Good luck to you all!