Watching a Meningioma Brain Tumor

@dollyjaneprenzel Thank you so very much. I appreciate your advice.

@pur1rucha
You have a lot of apparent complications which I am in no way able to comment on.
Nevertheless, I recommend you ask the physician with whom you are most comfortable if he or she can help you make sense of all this and also help make decisions so you believe you are making the best and most informed choices. I wish I could offer better advice. Good luck and Godspeed. Dolly, Nashville, TN

Hello everyone, They found a heterogeneous en plaque meningioma above the ethmoid sinus in 2024 via sinus CT scan from a referral ENT in Aug. ( which ended up being a pre-surgery! without my consent-6x more radiation:( I didn’t want to go back to this ENT.
Then first head and brain MRI in Oct. 2024. I haven’t had a biopsy and the Neurosurgeon didn’t suggested, but insinuated it. If they are going to cut my melon ( skull- even with a minimal hole, why didn’t they remove it when it was smaller😪)?
I haven’t been told how close this tumour is from sinus veins, I asked the Neurosurgeon and he said no… I still don’t understand location fully…
Due to suspected nasal allergies nasal drip, the Neurosurgeon I was referred to decided to investigate cerebro-spinal fluid leak (CSF), and got a second MRI on Feb.2025. ( Measured 2.7x2.2x1.3cm.) Results were good, no leak. He told me the tumour is considerably calcified and when found incidentally it measured on the first MRI 2.5x2.5x1.2cm. up to date ( third MRI was in Nov. 2025 the tumour has grown to 2.8x2.8x1.5cm. and because of the location ( skull based, extra-axial, left anterior cranial fossa ( left frontal lobe by the skull base) and with mass effect ( pressure) on regional sulci ( brain hemispheres midline ) and small indentation in falx cerebri ( a slight midline shift); my sense of smell has been reduced and it is worsening and also my sense of taste😪
I am in Canada and not sure if this tumour is operable or not, my guess is that it is an olfactory groove subtype meningioma and since there is hyperostosis ( bony growth) on the ethmoid bone ( due to its calcification); they would possibly need to remove all bone surrounded by the tumour.
I was just referred to an ENT ( Feb.2026) and he is also a skull base tumour surgeon to check my nose with endoscopic examination and he referred me to another ENT surgeon part of the skull base program for brain tumors to get a smell test.
He said that at this point, if they would do surgery ( either frontal craniotomy with a flap) or bi-frontal they will have to literally cut and destroy my olfactory nerves to be able to remove all of the tumour ( soft and calcified cells) and that not doing surgery could be safer for me to try to find out how much sense of smell I have lost.
He said that sense of smell is important yes, but if they would do surgery to remove the tumour, I could end up with a myriad of complications, plus a total loss of smell as they would have to cut my olfactory nerves to access the tumour…😪
This ENT gave me nasal steroid spray prescription to use ( which my endoscopic examination was normal, airways open, no polyps, no mucus build up but only a very minimal inflammation; (which I have a big dog inside and I’m very allergic to cats)
He told me that the spray was to supposedly rule out that my loss of smell was due to the allergies I suffer ( which they are very minimal-only sneezing and post-nasal drip) but I have never been tested for which exact allergies I’m allergic to)
The ENT said it is important to check this, because they could not be the olfactory nerve deterioration or tumour pushing. I am not a meds person and prefer to wait to leave my nose as is until they test my sense of smell; because otherwise with the spray ( which I also think it was a very high dosage with 6 refills-literally a 3 months prescription daily 2 sprays of 50mcg in each nostril 2x a day total of 400mcg. of nasonex ( mometasone) which contains citric acid and I told the nurse I was very allergic to. In the past, the other ENT prescribed something with lactose, and the pharmacy switched this to flonase ( fluticasone) but I didn’t want to use it for 10 days, let alone for 3 months…Because my nose wasn’t stuffed then either.
What do you think? Shall I wait until I have the smell test and not use anything? I will be willing to try saline nasal rinses, but my nose is not dry or stuffed.
I also researched that vasodilators ( as in freezing meds injection from a dentist) are both good for a person with mass effect meningioma because it could provoke a blood clot, or lack of blood circulation in the brain vessels.
Needless to say, I am very careful of what I take since the meningioma diagnosis ( which only the radiologist suggests, might be… and the Neurosurgeon said they treat people, not images (?) I don’t know what he meant?
Even natural or prescribed blood thinners, for high BP or high cholesterol could be dangerous, due to thinning the blood too much and provoking swelling or a brain bleed…
Please help! My choice will be to get an fMRI which will be more accurate with the olfactory nerve testing, than an ENT smell test.
Another question, due to the mass effect and lack of oxygen if I were to travel by plane on a long haul trip, will this be concerning as to cause intracranial pressure?
Thank you so very much in advance. I have an appointment booked with my Neurosurgeon (because I requested it) on March 17, and will ask for specific information, as well as my options. 🙏🏽 My Neurosurgeon put me on the active surveillance and left me in charge of self-reporting symptoms(?) but never said which symptoms. Hugs to everyone who live in the uncertainty.🤗💖
I wish I had finances to let Mayo Neurosurgeons make critical decisions like one comment here😪

@twomama I was recently diagnosed with slow growing meningioma. First neurosurgeon said he would do surgery. Second one at Stanford said it’s not unreasonable and could wait and watch. Can you share your journey?

@wkindel
Hello .. I was just diagnosed with small slow growing meningioma and getting a third consultation this Tuesday. Can you share your journey? Mine is left inferior frontal lobe and neurosurgeon at Stanford said I could wait and watch if I didn’t want surgery.

@pranas
Hi Christel .. I was just diagnosed with grade 1 meningioma and wondering if you would share your journey. I’m 72 and not sure about what to do. Have third consultation Tuesday.

@ees1
Hello .. I’ve just been diagnosed and mine is a grade 1. Can you share your journey? I’m 72

Please do your research on brain meningiomas. They are classified as grade 1, 2, and 3. Grade 3 is the most aggressive growing. If you are not having any symptoms I would recommend waiting and watching. If you start having any symptoms you need to get with your neurologist and have it removed. I was having symptoms for 3 years. I kept falling through the cracks. I started dragging my right foot, tripping and falling. Remember meningiomas are usually not cancerous. The treatment is to fix the symptoms, and prevent the tumor from returning. Please see the response to the below post I left. May God keep you in his arms and carry you through this journey.

@ees1 I am surprised they are wait to do your surgery. I was diagnosed early September 2025. Had my MRI and was in for surgery by September 18, 2025. Mine was also calisified. Mine was on the left side. I did have some residual effects from the surgery. I have some lack of sensation on my right side, but the worst is with my right foot and leg. It is getting better with physical therapy. My pathology report came back as a grade 2. I will undergo radiation treatment. Remember most meningiomas are not cancerous. I am doing fine. I came out of the surgery feeling 100 percent better than when I had the tumor. They were not able to get it all because of the location of the tumor. Since it is a grade 2 it will come back, hence the radiation. All I know is that God has been good to me through this whole journey and the next phase of my journey that is to start after the 1st of the year. Talk to your neurologist about all your options.

Hello
I had a 4 cm meningioma I just had surgery to remove 6 weeks ago . I was told if it was 2 cm or less it would have been possible to get rid of it with radiation but 4 was too big. I would suggest you get scans at least every 6 months so the doctor can see if it is growing .. I found out I had the tumor when I asked for an MRI because I was getting frequent headaches but no other symptoms other then some fatigue but thought it was just tension .