Meningioma: Anyone else? I'm frightened

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.

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.

Some place to consider, but, its a 3 hour drive for me.

What about Cleveland Clinic?

I’m in SE Michigan. Would you have any recommendations?

No, it wasn’t diagnosed in the 90’s. I’m asking of that is possible, considering I really had no actual diagnosis except “infection”. All the symptoms match.
The mennigenoma was recently diagnosed. When I spoke to the neurosurgeon, his first suggestion was to remove it, no other options were offered. My PCP will not respond with any opinion other than “it’s your decision.”

I read most of what “Dr Google “ had to offer, and I’m freaked. Glad I found this group.

Am I reading your post correctly? The meningioma was first diagnosed in the 1990s and you've been on the watch-and-wait protocol since then. And now, in 2024, you're deciding whether to have surgery. I agree with "cscmaryann"s" post that your next step would be to get a second opinion. Also, you need to educate yourself as much as possible. When consulting with
"Dr. Google" stick to reputable websites/institutions for information: Mayo Clinic,
Johns Hopkins, Cleveland Clinic, etc.

I advise getting at least a 2nd opinion, and a 3rd as well. You should be given reasons and options.

Hi,
I’m 67 year old female and I’ve just been diagnosed with a mennigenoma. The doctors found it after I had an MRI for a sinus issue.
Back in the 90s, I had an episode where I ended up in emergency with severe vertigo. At the time the doctors told me it was an infection that migrated into my brain and destroyed my equilibrium and part of my hearing. I also ended up with tinnitus and had to learn how to walk again. I was left with severe pain in the right side of my head, chronic infections, ear and eye pain with blurred vision.
I’m curious if that incident was caused by the tumor, or is the tumor the symptom from all the trauma?
The neurosurgeon I visited opted for immediate surgery with no explanation why or possible alternatives. I wasn’t comfortable with this so we agreed to wait for 6 months and reevaluate at that time as the menningenoma is “small”.

I’m afraid and am having a problem dealing with all of this.

Any suggestions as to how to move forward?

To any one who has had the surgery, what were the results? Did you end up with any side effects? Were you able to resume normal activities after surgery?
Thanks

Thank you so much. I will definitely look into surgeons who are very skilled at this type of surgery. I am taking my time and not rush into surgery especially when the surgeon states the surgery will be too difficult and it's no guarantee he will be able to remove Tumor. He wants me to see the radiologist to see if they could shrink the tumor. I'll see what will come out of this.