I have a minimum eleven meningiomas is this normal?

Posted by welshdragon54 @welshdragon54, Jun 12 8:59am

Just attended my 'Urgent referral' after waiting for15 monthsand although I was told there was an incidentlal find of two meningiomas during an MRI scan for a mass behind my right eye which had caused me double vision, it turns out a CT scan I had in April 2023 actually showed at least eleven meningiomas. The mass was removed August 2023 by an ENT Consultant Surgeon and was a benign mucocele luckily. So, there was a meeting held prior to my ENT consult with the Neurosurgeon in attendance, but it's taken until June 2024 for me to see him and be told that even last year he knew I had multiple meningiomas. I am shocked as I assumed my 15 month wait meant the '2' meningiomas musnt have been important. He said we need a more up-to-date MRI and my next appointment is in November,5months from now! I'm in the UK is this the 'norm' of lack of interest? Should I be alarmed? I'm actually rather angry ENT dept was superb&neuro in no rush!!

Interested in more discussions like this? Go to the Brain Tumor Support Group.

You need to ask more questions. I feel like there is no normal everyone’s experience is different as there are many variables from person to person. But did you get results after they found 11 tumors? What are their sizes, where are they located? Are they benign? Why are they making you wait 5 months? Is it because the office is busy? Can you get a second opinion? Are you having symptoms that are impacting your quality of life? Get a report on your last MRI & call the doctors office to get some answers. And above all be your own advocate trust your instincts that you have by posting this. Good luck & keep us updated so we can support you & pray for you. If you want to reach out to me personally I will be a listening ear and can help you make a list of questions. ♥️🙏

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what i find abnormal is that you are seeing an ENT rather than a neurosurgeon

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To Welshdragon54: I had brain surgery to remove a meningioma behind my eye 8 months ago at the university in
San Francisco. If I were you, yes, I'd be alarmed and upset with your neurosurgeon not scheduling the updated MRI sooner than later given that so much time has already gone by. Some meningiomas can't be operated on b/c of their location in the brain and once they are more than 3 centimeters radiation is usually not an option either. A radiation oncologist also told me sometimes they "turn" meaning their growth rate suddenly accelerates. It is true that frequently a "watch-and-wait" approach is a valid option, with an MRI scan done at 6 to 12 month intervals, but in your case, given that you have waited so long as it is, I would be concerned and push harder to get the updated scan sooner.

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@catv7

You need to ask more questions. I feel like there is no normal everyone’s experience is different as there are many variables from person to person. But did you get results after they found 11 tumors? What are their sizes, where are they located? Are they benign? Why are they making you wait 5 months? Is it because the office is busy? Can you get a second opinion? Are you having symptoms that are impacting your quality of life? Get a report on your last MRI & call the doctors office to get some answers. And above all be your own advocate trust your instincts that you have by posting this. Good luck & keep us updated so we can support you & pray for you. If you want to reach out to me personally I will be a listening ear and can help you make a list of questions. ♥️🙏

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re benign, my drs told me the only way to tell if the meningiomas are benign or malignant is to biopsy them

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i can’t comment more than to tell you my experience. My meningioma was watched for years before the drs suddenly became alarmed about it. That started with explanation by my Neuro-opthamologist that Ms are usually benign and grow slowly. i wish you all the best

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@mkoch

To Welshdragon54: I had brain surgery to remove a meningioma behind my eye 8 months ago at the university in
San Francisco. If I were you, yes, I'd be alarmed and upset with your neurosurgeon not scheduling the updated MRI sooner than later given that so much time has already gone by. Some meningiomas can't be operated on b/c of their location in the brain and once they are more than 3 centimeters radiation is usually not an option either. A radiation oncologist also told me sometimes they "turn" meaning their growth rate suddenly accelerates. It is true that frequently a "watch-and-wait" approach is a valid option, with an MRI scan done at 6 to 12 month intervals, but in your case, given that you have waited so long as it is, I would be concerned and push harder to get the updated scan sooner.

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What were your symptoms for your meningioma behind your eye?
I had a malignant fibrous tumor removed last year.they originally thought it was a meningioma .
They left a small piece that was too close to an artery.
Starting Last month I have had twitching in my eyelids.
Worried that tumor may have metastasized .
MRI and PET next week.

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@suemarie3

What were your symptoms for your meningioma behind your eye?
I had a malignant fibrous tumor removed last year.they originally thought it was a meningioma .
They left a small piece that was too close to an artery.
Starting Last month I have had twitching in my eyelids.
Worried that tumor may have metastasized .
MRI and PET next week.

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i’ve also had twitching in my eyelids. Neuro-ophthalmologist diagnosed it as “nystagmus” it did not seem to be of great concern and has gone away

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You need to get the reports from your scans and see the size of your m’s. I found that there was very little concern until my M grew to a particular size and in a particular manner. My neuropthamologist reassured me the M’a are generally very slow growing and usually benign until the size increased and the growth pattern changed to “enlarging convexly”

Wishing you all the best

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@welshdragon54, it is not uncommon to have multiple meningiomas. You might be interested in this related discussion that @pegorr started and while back and remains active:
- Anyone have multiple meningioma brain tumors?
https://connect.mayoclinic.org/discussion/brain-tumors/

It sounds like active surveillance, sometimes described as watch and wait, is being recommended in your situation, but that it was not described as such. I prefer the term active surveillance because your team is actively monitoring you. Further treatment may not be necessary. However, it is unsettling just to be sent home and told "see you in November".

Here's some information from Mayo Clinic about the active montoring approach
https://www.mayoclinic.org/diseases-conditions/meningioma/diagnosis-treatment/drc-20355648

Can you call your doctor to get your questions answered and feel more confident in your care?

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Interestingly I had a similar experience in that my neurosurgeon told me I had 1 tumor, but my GP told me I had multiple, which I did. I have come to learn when the tumors are very small, they tend not to get too excited about them because as a rule they are very slow growing, and cause no problems. My doctor is very conservative in his treatment and does not want to harm me to remove something that wasn't causing issues. I have had 2 craniotomies and gamma knife and cyberknife radition to stop growth, & remove tumors. I still have 3, 2 which are causing lots of trouble, but again they are in places that if removed will most likely affect my quality of life in a big way, so me, Ted, Tina & Tiny are finding ways to get along. Some days it feels like they are tapdancing on my brain but other days are ok. I consider it my present normal or mostly normal:-) I wish you all the best. love,peg

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